How I Found Out

Besides, “How are you feeling?” one of the most common questions I have been asked through my cancer journey is, “So, how did you know you had cancer?” or some variation of this question.  At one point, early in my treatment I thought people were just curious and that they wanted to soak up details about my misfortune the way everyone slows down at a car wreck to see if there is any visible carnage or limbs lying on the pavement.  But over time, I have realized that what people are really asking with this question is, “How would I know if I have cancer?”   Like most of you, I was a healthy person.  I was 31 years old, normal build, height and weight.  I never smoked, I never did drugs, I liked to have a few beers at a cookout and a glass of wine with friends, but otherwise did not drink.  When I filled out my health insurance application, it was just a looong series of no’s.  No, I never had that disease, no I don’t have high blood pressure, no history of this that and the other thing in my family.  I was active and exercised.

Fortunately, most of us are not accustomed to being faced with our own mortality and if I could go from that picture of health to Stage 3 cancer without knowing it, it is not unreasonable to think that many of my friends, neighbors, colleagues and acquaintances, upon seeing for themselves the misery my disease brought to me, would start questioning just how healthy they were and wondering how they would know if their own bodies were harboring a disease that might be out to kill them.

So, for those of you who never heard, don’t remember, or are just finding this site for the first time and want to learn about how I got started with Hodgkins Lyphoma, here is a chronological timeline of everything I can remember that might have been involved in my diagnosis.

June 2007 – I am on vacation with my wife and 10 month old son in the Caribbean.  We had dinner at a beachfront bar where the dining room consists of half a dozen picnic tables half sunken in the sand.  It was past sunset when we ordered our food and as dusk settled in, hordes of little bugs started coming out from the sand.  We packed our food up and walked back to our hotel room not wanting our little Dominic to get bit up by the bugs.  Later that night, my ankles were itchy and dry and I thought it was from the bugs on the beach.  Maybe it was, maybe it wasn’t.

August 2007 – While attending a convention in Chicago, I develop a wheezing feeling in my chest and it becomes very painful to take a breath.  I go to a primary care doctor as soon as I get home and am diagnosed with Pleuresy, an inflammation of the fluid surrounding the lungs.  I am given a prescription and feel like normal within two days.

December 2007 – The itching on my ankles has recurred a number of times since that trip to the Caribbean, so I go to a dermatologist who gives me some creams and some kind of pill prescription.  My ankles get better within a few days, but shortly afterward, a similar rash breaks out up and down my legs.

March 2008 – The rash has gotten worse, so I go to a primary doctor who prescribes a steroid.  It helps and the rash gets under control, temporarily.

April 2008 – Traveling again, this time in Washington, D.C.  After a day at the convention center, I am out for an evening walk with Angela and Dominic along the Mall.  We stop in at the Air and Space Museum to use the restroom and while walking back across the Mall I start coughing.  It feels like there is a dry ticklish something, like a piece of a feather, stuck at the back of my throat and no amount of coughing, hacking or spitting can get it out.  I finally get control of myself by concentrating on long slow breaths.  It was a very strange coughing experience because it came on so suddenly, was so intense, happened in a memorable place and because it happened again the next day.

May 2008 – The cough is still troubling me on a fairly frequent basis, so I go to the Walgreens Minute Clinic and get a prescription for some kind of antibiotic.  The cough seems to improve a little.

June/July/August 2008 – I occasionally experience heavy sweating during the night.  I wake up to go to the bathroom and realize my bed sheets are damp to the touch and the back of my shirt (I always sleep on my back) is soaked right through.  I blame this on the pillow top mattress we bought two years prior which has formed two hollows where each of us lay.  I blame the sweating on the fact that I sleep in a little fluffy hollow in a thick mattress, with a down comforter on top.  I never knew that night sweats are a symptom of something being wrong.  I had never heard of that, so call it naivete or ignorance.

August 2008 – We now live in Atlanta and the cough has become a daily companion.  Every morning, I get up and spend several minutes coughing and producing a small amount of phlegm.  By the time I am done with breakfast, it has passed and I spend the rest of my day feeling fine.  The rash is mostly under control except for a bit that is present in my groin, and it causes a fair amount of uncomfortable itching every day.

September 2008 – I don’t have a doctor in Atlanta yet, so I go to an urgent care clinic in Alpharetta and explain the cough and the itching.  The doctor hypothesizes that it could be an infection, an allergy or adult onset asthma.  He explains that an infection is the most likely cause and sends me home with a prescription.

November 2008 – I am sweating every night to the extent that I am dreading night time.  It is interfering with my sleep and making my side of the bed smell bad.  I still don’t think it is anything more than a bad mattress purchase though.  I also notice that many of my pants are fitting looser and when I weigh myself I realize I have lost about 25 pounds since the spring of the year.  In that time, Dominic also went from just being able to walk, to running and spending time at playgrounds.  So, I credit the weightloss to being more active and to the extra work required to walk up and down the hills of our new neighborhood in Atlanta which is in sharp contrast to the absolute flatness of Florida.  We also take a vacation to Mexico in November and my cough is very noticeable to my friend Joe, who has joined us there and my parents who are along for the trip.  The cough now comes and goes at all times of the day.

In late November, I think after Thanksgiving, we are doing a lot of work on the house one weekend and on Sunday night, I sit down with a portable chair massager we own.  I am feeling very tense and sore from all the heavy work of the weekend and sit through two full cycles of the massage.  When I wake up in the morning, I feel a lump under my right arm.  It is small and not painful in any way, it is just there and I can feel it pressing against my arm when my arm is straight down and pressed against my right side.  The next day it is gone.  So, I assume it was an inflamed lymph node, caused by the massage the night before and the subsequent release of acids and toxins.

December 2008 – We travel to Michigan for Christmas and several people comment on how much weight I have lost.  My Grandma is the most surprised by it and asks if I am sick.  I laugh that off and assure her I am not sick.  I explain that a combination of more physical activity, hills and some work related stress have caused me to lose weight.  I also joke that I had gotten a little heavy and had some extra weight to lose.  During the week of Christmas, the lump under my arm returns and this time it does not go away.  I am finally giving in to the fact that something may be wrong.  After months of dealing with rashes, coughing, night sweats and weight loss, I tell Angela that my New Years Resolution is to get completely healthy.  I spend a lot of time researching doctors to find one that I feel would be a very good primary care physician and make an appointment for January 5, the first day of the new year that his office is open.

January 5, 2009 – I wait nearly 45 minutes in the waiting room, then another 30-40 minutes in the exam room before getting so annoyed that I walk out.  As I am walking past the front desk, one of the nurses asks me where I am going and I explain that I am fed up with the wait time and will not give my business to a doctor that has no respect for his patients time.  She encourages me to stay a little longer and promises to get someone in to see me right away.  I had typed up a list of all the problems, big or small, that I had been experiencing so that I don’t forget to ask about anything, and I decide to go back and wait just a little longer.  I finally see the doctor and give him the list.  He immediately takes on a concerned tone and tells me he would like to test for a number of theories.  The theories he explains to me are a very bad infection, tuberculosis, and ruling out that it could be something worse.  Months later, when I get my own copy of his patient records I see that he has written on his initial exam form from that day, in fairly big letters, “Possible Lymphoma.”

I get an x-ray, pulmonary function test, EKG, and they begin a TB test.

January 7, 2009 – I go back two days later and learn that the skin test has ruled out tuberculosis, but he is still very concerned about a bad infection.  At one point during that appointment, Dr. Gupta grabs me by the shoulders and tells me, “I am very glad you decided to stay on Monday, and no matter what the problem is, we will fix it.  And I will be here for you the whole time.”  I thought that was a little strange and overly personal for a doctor.  That day he ordered more x-rays and based on those, he asked me to get a CT scan.

January 9, 2009 – Early in the morning, I go to Emory Johns Creek Hospital to get the CT scan.  It is uneventful, as radiology appointments typically are, and I go home.  We are having a houseful of people that night for a neighborhood party and there is a lot to do.  Two hours later, a nurse calls from Dr. Gupta’s office and says he would like me to come in as soon as possible so he can discuss the CT results with me.  I am annoyed by this, but still mindful that if a doctor wants to talk “right away,” then I should probably go.

I am sitting in the same exam room that I had started the week in and Dr. Gupta walks in.  He wastes no time, sitting down in a chair across from me and says, “I have bad news.  You have Lymphoma.”  I tense up because even though at that moment I had no idea what Lymphoma was, I was afraid because the doctor said it was bad news.  We have a short conversation in which I learn that Lymphoma is a cancer and that I will certainly need chemotherapy.  Other than this basic information, Dr. Gupta will not discuss any other details and walks me out to his front desk where he makes a phone call and sets an appointment for me to see a Hematologist/Oncologist in 5 days.

And that is how I found out I have cancer.

149 thoughts on “How I Found Out

  1. matt c says:

    Interesting read for me, as I had a similar experience. I have been in remission for over a year now, but have a weird cough again. Thinking it is not the same thing, but you tend to get paranoid after dealing with this stuff.

    • Michelle says:

      Did they biopsy? I was told I had cancer. A biopsy was done and confirmed I had Sarcoidosis…an autoimmune disorder. A common symptom is a non-productive cough.

  2. Dan L says:

    I love your blog. I was diagnosed in Feb of last year with the exact same stage of Hodgkin’s. Like you the fist round of chemo didn’t work and now I’m starting the ice chemo in prep for the BMT.

  3. Tim B says:

    I just came across your blog this evening. I live in suburban Detroit; my wife had been diagnosed with stage III just before Labor Day. ABVD doesn’t appear to be working as expected. We went to Karmanos today and ICE was suggested prior to stem cell transplant. If you have a moment to drop me a line, it would be greatly appreciated.

  4. Mari says:

    Your blog is very interesting; I have a cough that started out as once in a while . . . for 30 yrs. and now it has been a full year and I just can’t get rid of it. I am finally going to have a chest X-ray and SMAC25 done. Last night was my worse night. I just kept putting it off since the cough would last a few weeks and then go away, but now I cough every day and night.

    I am sure your blog will help many others. TKU

  5. JOANN GONZALEZ says:

    just came across you blog….i’ve been in and out of doctors offices with an rare and undiagnosed itch on my breast. the mamogram and ultra sound say no cancer which was what they thought. the itch is horrible now on my hands, feet, lower legs and shoulder…. I hope your better and hope they figure out whats wrong with me. Also get alot of headaches behind my the back side of my head….I’m not one to be sick and I just feel like somethings wrong….. Your persistent visits encourage me to go on seeing new docs until i get an answer thansk…j

  6. louise says:

    Hi, im 29 awaiting results back for a c reactive protein test and full blood count. My symptoms are swollen lymph nodes in groin area, night sweats, persistent evening itching, which can be anywhere. Tendency to bruise easier and fatique.
    I found your blog very helpful and now plan to write a methodical list of my health changes over the last year.
    my doctor has not mentioned lymphoma, I’ve just diagnosed my self. Which may seem stupid, i can’t help it. The wait is eating me up, my test was three days ago. I get the results tomorrow .. I expect there will beuch more tests to come if anything shows up!!
    Did you also have a c reactive protein test.
    I live in England and wonder if our medical pathways are different.
    kind regards

      • Matthew B says:

        hey buddy, couldnt find were to leave a comment… But i had testicular cancer.. beat that… 6 years on i sweat alot.. at night mostly… i lost a tonne of weight… ( i took it as i had an issue with marijuana for quite awhile and i just smoked more when i got hungry to the point i could ignore hunger pains, but ive quit now and i eat like a horse again) im always tired.. cant sleep properly.. lumps in groin neck and quite a large painfull one under my right armpit… Guess its time to see a doctor.. after cancer of the ballz and chemo with that igot scared and i barely see docs.. but seeing tis makes em wanna dos something.. i haver a 2 year old son and i dread what might happen if im not around.. would love a private email conversation..
        if it helps im 32 caucasain……..
        i live in australia so luckily healthcare is free

    • Taylor says:

      Hi, I’m 18 years old and I am experiencing all the same. It firstly started with a lump in my groin (bikini line) area, which keeps getting smaller and coming back. I then developed a weird patchy rash all over my body, and about 3 months later a small patchy rash has appeared on my leg. I now have uncontrollably itching in my fingers, I am waking up at night itching my fingers because it’s that bad. I’m just so scared I know I have cancer and I really need to speak to someone 🙁

      • Hi Taylor,
        You are going to be okay. Do yourself a favor and get to a specialist (hematologist oncologist) and discuss these symptoms. Let them go through a diagnosis and find out for sure. It’s okay to worry, and to be scared, but try to save that energy for after you know what you are dealing with. Until you know what is happening, you won’t know how to fight. Keep in touch.

        – Dan

      • Barbara Simms Slimick says:

        Hi Taylor! Don’t put this off. Lymphoma can have different symptoms for everyone. I am 65 and started with a cough and wheezing. Have had it over a year. Then I start getting strange bumps and rashes all over but before that I remember itching all over but it Felt like it was inside my body. All of the symptoms seem to come and go and now I have a lump under my right arm. I feel achy in different places all over my body. I don’t have a lump but I do you have itching and my groin. I went to the doctor the first of the year for my annual exam and he get a complete blood count. My lymphocytes were up a little and my Eosinophils were over 900 with 500 being the max. I get my CT scan tomorrow and we will see what develops from that. That all of these things that are going on our from an underlying condition and unfortunately it may be cancer. One thing you need to be aware of is that a hematologist/oncologist are not the last doctors you should see. I have learned that only the path allergist have the knowledge of the white cells. I see there are at least 70 different types of lymphocyte cells. So for them to diagnose you exactly and know how to treat you exactly I wouldn’t do anything without also having a pathologist. Chances are that the diagnosis and treatment would be better if the pathologist was included. Good luck to you and God bless!

  7. janice higgins says:

    Hi thank you for describing your journey to discovering the C word. Mine too took too long and when they finally figured it out it was stage 3. I have been cancer free now for almost 4 years and have recently been coughing a lot. Just had a chest X-ray and waiting for the results. I think once you go through hearing those words you have cancer that you become much more in tune to what your body is trying to tell you. I, like you , was fit, a runner, a very high energy job and kept attributing the small signs to anything but cancer. It really was a good friend who heard me coughing one day that said ” you know you really need to take care of yourself because no one else will
    ” I will never forget that day! It still resonates with me. I now try to focus more on not just giving to others but looking after me first and praying that I will be around to see my grandson grow up:) Life is a gift and sometimes I think we take it for granted. We are not invincible and no matter how hard we try to be healthy and live fit and active lifestyles cancer can sneak up on anyone. May you gain strength in knowing there are others just like you who have been asked that question “how did you know you had cancer?” Take care and I hope you can live a long full and happy life.

    Jan

  8. Shairlyn Small says:

    I love your website,and will pray for you. I have Fibromyalgia, Lupus, IBS,Pelvic Floor Dysfunction, etc,. I have had a 2 bouts of CDIFF..with that being said, I have had a swollen painful lymph node on the right side of my neck. My blood count is sort of low I had a CT scan ordered, I called the office I was on hold for a second the lady came back and told me to come in for an appt to see Dr. Lopez…do you think is Cancer, if the dr wants to talk to me in person?

    • Shairlyn,
      Sorry I didn’t respond right away. First of all, I am a travel consultant, so I don’t even pretend to know what a variety of medical symptoms mean. However, I do have a lot of experience with doctors and hospitals, and I imagine you do as well with the health history you have detailed here. If there has been any commonality between doctors, it is that they really avoid phone calls. They want to do everything in person. So don’t panci just because the doc wants you to come in.

      Dan

      • Anita Butler says:

        Hi .. just been trying to find out what’s bothering me , I’m a 54 year old female . With that said doctors are constantly blaming symptoms on menopause. But lately I wake up at nite drenched , I get chills from time , been having groin pain but just had back surgery so they say that’s probably that. Started two months ago been losing about 2lbs a week I have loss 18 lbs sense may . I have lower back pain , rash on my feet they call athletes foot but it doesn’t itch, another doctor called it cellulitis? But lately my groin both sides have been a lot of pain . I’m not sure what is wrong with me I feel there is been through general blood test .i have a tender throat but they say that’s acid eating my vocal cords . I’m tired a lot but they blame that on sleep apnea. Now tonite my armpits wouldn’t quit itching ? I think I’m going crazy !

  9. Darren Griffiths says:

    Hello at the moment ive got a wheezing chest and real bad night sweats ive also got a rash that started on my feet and as since gone on both legs up to my knees every time i Cough i get shooting pains in my Groin ive had an X ray and my Doctor as said he needs to see me im really worried its Cancer please could you tell me does this sound like cancer please could you contact me my number is07527221418 Darren Griffiths

    • Darren, as I have said before on this site, I am not a doctor, not even close, so I would not tell you what I think might be wrong with you. What I will say, and please read carefully, is that I had every one of your symptoms at the exact same time. And these are ALL the classic symptoms of Lymphoma B-Category. I had everything you describe, including the groin pain, and I was diagnosed Stage 3B. Stage 3 means the cancer cells are present in more than one major area of the body, and B means they are manifesting in noticeable symptoms. I will also say I am concerned about you and I HIGHLY urge you to go see the doctor today. Today. I am also sending you a private email.

  10. Bee Gill says:

    Hi

    I’ve had night sweats for near enough a year now and earlier this year I had an itching that was all over my body. It didn’t leave a rash but I was so uncomfortable it was unreal that anything could make me scratch so much. That lasted about 3 weeks and hasn’t come back. However I now have a cough that my husband noticed ‘comes and goes’. It’s not that bad that I’m having a coughing fit, but sometimes mid conversation I break out into a cough. It doesn’t hurt my chest or throat. It’s just a mild tickly cough.

    I can relate to waking up soaked to the skin. My 10 year old slept in my bed whilst her dad was away a few weeks ago and she thought mummy had wet the bed. I am now concerned I may have Lymphoma. I saw my doc last week and he checked the glands in my throat and my armpits. My left armpit was very tender towards my breast and he has now referred me to a specialist. I’ve also been diagnosed with endometriosis and had blood tests which showed an accelerated level of ca125. This can rise if you have the endo but it is also used as a tumour indicator. The next few weeks are going to be very difficult. I just want a diagnosis for all the symptoms I’ve been getting. I have not felt well in many years and just put everything down to growing old. I have 3 grown up children and a 10 year old. I just want to see her grow up too.

  11. Kara says:

    So interesting to see your journey! I know that had to be scary for you! how are things now?

    I am playing around with the idea of going to get checked now. I have been visiting Dr Google and pretty much diagnosing myself. I think its because im scared to hear a real dr say it, or I dont want to think its something and then waste money I dont have (no insurance) getting tests done.

    If you were me, and had these symptoms would you just go?
    Night Sweats
    dull bruise like pain in armpit region. (I cant tell if its a lump or not?)
    EXTREME fatigue
    tingling/itching/swelling of hands and legs. (doesnt happen every day, but happens)
    general rundown feeling.

    I do differ than you as I have gained weight. I also have hypothyroidism so I dont know if any of this has to do with that.

    • Kara, yes absolutely you should go get those symptoms checked. Tell the doctor all of the symptoms and have them do blood work and a CT scan.

  12. Mary says:

    Hi,
    Thank you for sharing your story.

    I have quite similar symptoms but my rash was very bad in a hot country and calmed down when I came back to London, is that what happened to you? I have a hard lump on my chest thats very painful (not only in the chest area) and when I went to the hospital they said it was an infection, but I don’t feel good at all, pain is less but I’ve been sleeping a lot because I get bad headaches and get really tired easily. I have got a cough for about two-three weeks now and I also get really bad night sweats. I don’t think I have lost a lot of weight as you, I barely eat now and I’m a food lover. My appointment is next week which is very irritating because I can’t help but diagnose myself.

    • Hi Mary, Let me know what happens when you see the doctor. It doesn’t sound good, whatever it is, but these symptoms can be related to a lot of things…not just cancer.

  13. letty says:

    Ive read your page and i feel some of your symptoms and im very very worried decause my doctor hasnt found anything wrong with me.. Well ill be happy to hear any advise thank you.

  14. Margaret Gibson says:

    I came upon your website because I have some of the same symptoms you described. I think we all tend to ignore health issues until they really catch up with us, but I must say that your blog is such a help and written so clearly and well. It has made me realise that Drs often need to be pushed to put symptoms together and get to the correct diagnosis. Of course, as you say, some things can be attributable to different causes , but I will get things checked now.
    I wish you and your family all the very best and thankyou.x

  15. that is kinda sad but i wonder about cancer because one of my friends at school said if you can your hand can go around your waist then you will have cancer when you are fully grown and me as well is very healthy and though i am skinny i”m very healthy

    • K-nall, your friend is wrong. Don’t listen to that nonsense for even one moment. There are no physical measurements or ratios that are linked to cancer in any way. I’m sure you will be just fine.

  16. GeeBee says:

    Hi
    I just came across your blog. I am one year out of my Lymphoma (large b cell, stage 2). I had both radiation and chemotherapy (CHOP treatment). My treatment sent me into Congestive Heart Failure but Thanks to my Heavenly Father, I am doing much better. I just recently had my one year anniversary scan and my tonsils lit the scan up so I will be having a tonsillectomy in a couple of weeks. I am praying for you and for all those out there who have gone through or are going through the Big C! Please don’t ignore your symptoms. If something is not normal then you need to go see what is going on! We live in a different society now and our bodies have been exposed to things that we don’t realize. Cancer is not the end of the world if caught early! God Bless to All!!!

  17. Gregg Bevard says:

    Night sweats are episodes of nighttime sweating that soak your nightclothes or bedding even when your bedroom isn’t excessively hot. Night sweats are a common problem many people experience from time to time. Although uncomfortable, night sweats typically aren’t a sign of a medical problem. *…*

    My favorite webpage <http://healthdigest101.com/index.php

  18. frank says:

    Wow I had FNHL grade 3. Got it right after my wife left me for another guy. It was the most horrific time of my life. But I made it though and show NED. I lymphoma is treatable and even curable depending on the subtype and stage. I have not had a chance to read all of this blog but I hope you have faired well.

  19. Greetings Dan,

    Hope this message finds you and your family doing well.

    Thank you for sharing your personal walk with lymphoma. Can not imagine how difficult your walk thru this was and how it affected your family. I too live in GA and travel to Atlanta for the Shepard center. My battle is MS X’s 4 years However, I’ve been battling swollen lymph nodes for eight months now. Armpit, left arm, neck and collar bone area and the one in armpit is starting to become sore from the pursue. The nodes have only released three times within the past eight months. My PCP thought I had breast cancer and as of current date no breast cancer just a core biopsy and that was the left breast. Now, I have severe swelling on that same side to my upper rib, spleen area so my doctor sent me to a hematolgist and he ordered a full work-up along with a CT with and with out contrast of chest. Well the Dr accepted a old CT I had over a year ago, which revealed some issues to do with my diaphragm, liver and 5mm glass like lesion, nothing more was discussed about that. I felt lost and dumbfounded by that and then on to the results of my blood work and it reveled an ANA Pattern of a positive 1.160 and a negative titer, low RBC, WBC lymph was very high. Well, he started overlapping SLE lupus. So, my reactions were, what is causing the weight loss, night sweats, itching at night mainly, but the itching it’s durning the day too, just not as bad. What is weird is the itching is like a stinging with a hypersensitive zapping allover my body, fever durning the evening with the back sweat along my spinal area, back of legs and under arms. it’s like a drippy rag was laid in those areas, but, not all the time. just the itching all the time, antihistamines don’t help that much. Needless to say, those things have not been taken into consideration and left in the dark because they don’t know what it is. My doctor told me he would see me thru and he did not keep his word. know, I strongly believe he should have taken a up to date CT and he started his concern is, the radiation.

    Any advise? To current date, the lymph nodes are flaring in differnt areas. Doctors tend to blame the MS is the reason for everything while they keep billing my insurance.

    Are you still in remission?

    Angela

    • Angela,
      Thank you for asking, yes I am still in remission. I am not a physician by any means, so I can only speak of my own experience with Hodgkins. But your symptoms sound similar to the ones I had “back in the day.” If you think there is something more than the MS, then you might want to see a hematologist and request a new CT scan or even a PET scan. Originally, my doc diagnosed Lymphoma with a CT Scan. Then, I needed a surgical biopsy and a PET Scan in order to determine the specific type and stage of Lymphoma, which turned out to be Stage 3, Hodgkins Lymphoma. The CT scan will identify if there is a mass somewhere inside you, and then if there is, they can go in and get a sample for biopsy. There is no reason to stay with your current doc for everything if you aren’t getting the answers you want, or you feel the doc isn’t listening. You will feel better once you have an independent review from someone else.

      Dan

    • Lati says:

      Hi, I hope you are well. I have the exact symptoms, doctors can’t figure out what is going on. Did you get a diagnosis?

  20. livja says:

    Hello.
    First of all I hope you are doing better. Thank you so much for sharing. I ran into your blog while I was trying to figure out what may be the reason I have the nasty cough and wheezing. It used to be once in a while thing and now it is everyday. Im almost afraid to go to the doctor because last year I was diagnosed with lymphomatoid papulosis. it’s a very rare condition that expresses itself in a form of a rash (red bumps) mostly around the arms and back of upper thighs . It took them almost three years to finally diagnose me. They thought I had an alergy or a bad infection exema or psoriasis, you name it, they thought I had. it was hell. Now I feel like they are going to run me around again. This condition has a 25 percent chance to turn into lymphoma cancer. I am sharing the details of the condition because they day I was correctly diagnosed my friends sister was diagnosed with lymphoma cancer. She had had the same condition as me when she was 19 years old and no doctor found out for her. Three years later she was diagnosed with stage 3 lymphoma cancer and her current doctor told her that had she been correctly diagnosed three years ago they probably could’ve prevented it or at least caught it early . I did set an appointment with my doctor and it is later this week. I’m ready to find out and hopefully it is nothing. I am a healthy 24 year old athletic girl but as I have witnessed in my life cancer doesnt care. It happens to anyone. To everyone else who commented on this blog, I wish you all the best!

    Livja

  21. Old Family Curse says:

    I am a 34 year old male, with a wife, a 9 year old child, a 6 year old child, and a set of 2 year old twins. 10 Years ago, I had testicle cancer, and had the tumor removed. Now, I have developed a very large, and uncomfortable, lump under my left armpit. I found your blog, while searching for results about the lump, in question. Many members of my family, on both sides, have died from cancer, and I would like for my kids to be free from this curse. I can handle the outcome of these issues, what ever they may be, but would love for prayer for my generation, that they will be freed from the old family curse. I read every post, and I hope everyone turned out well. Please remember that everything happens for a reason, and we should accept it for what it is. I am going to see a Dr. soon, even though I have no insurance, so I hope to be back with some good news soon. Wish me luck, strength, courage, and wisdom. I will butt heads with this again if I must, and I would rather die a thousand painful deaths then have my kids go through it. I just pray that my family curse will stop with me.

    • Good luck buddy. I’m thinking about you hoping for the best. If you have not found the Stupid Cancer group yet, I strongly urge you to look it up. They provide advocacy and most importantly support and understanding for the unique challenges that come with a cancer diagnosis before you are “old.” Their website is http://www.stupidcancer.org, but Facebook is probably the best way to connect with their current info.

      • Old Family Curse says:

        Thanks, I went to the Dr. a couple times now. Some elevated blood work, and he says the swollen lymphnode must come out for biopsy. Thanks for the link, I will look it up this weekend. Have a great day, and be blessed.

  22. Sharmz I says:

    Hi all
    I came across this blog while trying to find out if one of my clients just might have cancer. I am a recovery coach in South Africa and my client showed me a ‘rash’ today that shocked me, he said that it goes down into his groin. I’ve made an appointment for him tomorrow and I believe that his Higher Power will be watching over him as he watched over him in his first days of sobriety. God bless all, please pray for him. Sharmz I,

    • Thanks for posting Sharmz. It’s a long way from a rash to cancer, so I would recommend not getting alarmed just yet. But visiting the doctor is a good first step. For what it’s worth, the itchiness I felt on my skin was never visible. I could feel it, but the skin looked perfectly normal.

  23. Tammy says:

    Hi I came across ur blog while trying to read up on my symptoms, I’ve been tryiing to have some understanding of what might be going on with me. I have been to the Dr several times they say I have an infection of some sort put me on antibiotics n send me home, ill do good for a minute then back to being extremely tired, I to have a very annoying cough that comes n goes however it been there more then not I have itching spells n a rash that has formed on my chest neck n thighs. Recently I have started getting very large very dark bruises one on my upper thigh that almost covered the entire thigh. Then one week later got another very large very dark bruise only this time its covering my entire left Brest. The only this is I’ve put on several pounds even though my appetite has been poor. Still confused

  24. ema says:

    I read your blog and am very interested. I’m only 20 but my whole family has been diagnosed with a string of different diseases and I’ve been in and out of the hospital being constantly rediagnosed. I have recently been dealing with a rash that comes and goes on my arms and legs as well as dark splotches. I get crazy headaches that last for weeks and have been finding I can’t even go pee. Doctors say its probably the weather or allergies or an infection. They haven’t found allergies or infections but give me medication anyway. Its scary Cuz I get bad lain in my breasts and chest and wish I knew what it was. How did you deal with it before you knew? Thank you for sharing your experience

  25. karyn says:

    In reading this I am so sorry to anyone that has had to deal with this infliction. I am a 34 year old mother of three. I am usually active, running 5k’s, working 3 jobs. I am so fatigued. My lymph nodes are painful in groin and armpit. I have a dry cough with phlem. Even pain in legs dr said they are bakers cyst behind my knee. My left arm has been numb for months. I have trouble breathing and chest pain but at this point couId be anxiety. have had blood test for hiv,mono,lymes disease, thyroid, cbc, inflamation in blood, ekg, chest xray, and all came back ok. I had an mri of my brain to look for ms. I know something is wrong with me. The dr. is not much help. I called a orthopedic specialist to check my arm and have an mri in am to check neck for injury on why my nerve is down. I came across your blog in searching my symptoms. I am very worried that I am not being properly tested to look for what I have. I do fear it is cancer. Needed to vent to others in a similar situation. Thank you

  26. Megan says:

    Thanks so much for sharing your story! I have a question. If your X-ray comes back normal is that a good indication that you DO NOT have lymphoma. The stories I have read so far was found on ct/ chest X-rays so I am quite curious…

  27. Sandra says:

    Thank you for being here…. I wish you and also your guests the very best of health. Crazy how its the last thing on your mind till it’s you that is sick. I have been caregiver for 3 very close family members who passed. That is a hard role and I hope I can take care of myself.

    Right now I just need to get this out of my head…. I’m worried, scared, frustrated. You can pass this message by and my feelings would not be hurt in the least bit.
    First week of July I had pain on my right side. Second day it was also in my back on the right side… then the next day I could not take a deep breath. After the weekend away I went to my doctor and she thought maybe I had a kidney stone so she had a CT done. No kidney stone was found but I had several nodules in my lungs and the next morning I had a CT with contrast of my chest and found the were at least 15 nodules throughout my lungs and my lymph nodes were swollen to an alarming extent. I was then sent to an Oncologist who ordered a Pet Scan. Then he sent me to a surgeon for biopsies of the lymph nodes but not the nodules, that was the 15th of August. He feels it is 90% percent sure it is not lung cancer. I have never smoked, no drugs and only have cold beer with pizza on occasion.

    My Mother passed with Lymphoma. My only symptoms are being really tired and hot flashes especially at night that I thought were because of menopause. I do have itching to a point that I bruise but never a rash.

    Of course that 1st week in July I find out also that my husband of 38 years admits to acts that my gut told me was happening anyway. I have not worked in nearly 9 years to care for my Grandkids. I want to leave but can not support myself. My first interview since 1986 ended just an hour before my first oncologist appointment. I was so nervous I did not get the job or maybe I was just too old (57). I still will not get any news about my health till the 23 this Friday… and it could be just more tests! This is taking so long I need answers :/

    If your still reading this… I apologize for this post, please feel free to delete it. Sometimes just getting it out there makes you feel better! And it did. Thank you!

  28. Rebecca says:

    Hi,
    I found a lump under my right armpit 8 years ago while breastfeeding my 3rd child. It went away but came back last year but would always go away within a week or so. About 3 months ago, the lump came back and stayed. It’s about 1-2 inches wide, irregular in shape and quite painful. I went to my doctor this past Monday and my doctor has me scheduled for a mammogram
    and ultrasound this Friday. She also started me on antibiotics.

    Tuesday, I developed this strange itch and rash. It started on the back of my neck but since has moved to my knees now my hands. It’s strange because I can see little bumps like bug bites and they are extremely itchy but keep moving to different parts of my body. Do these sound like your symptoms? Of course, I’m nervous but the doctor seemed to think it’s an infection but wants to be safe than sorry. I did have a mammogram about 3 years ago when I was 39 and all was fine…and that was after the first notice of the bump.

    Thanks for any insight. I’ve been looking all over the web for a similar type of lump like mine but don’t find much. Mine is fairly large, swollen, painful, easily moveable under the skin and does change in size often. Some days it seems smaller and other days larger.

    Hope you are feeling well and thanks again for your help.

  29. dan says:

    hey. i just read your story after reasearching about this. because today the doctor said that i have cancer (lymphoma). im scared like crap and it fills like all my future plans have gone right out the window. i know now how important my family is and surprisenly i fill ok about it in a way just scared.

    it started for me when i was getting bad pain in my right sholder. bad gut and a cough that i though was from my starting to smoke.

    • Hey Dan, I know it feels like whatever path your life was on is history, but it does not have to be that way. There will be a lot of bad news, but also a lot of growing and maturing in ways you never expected. Next weekend I will celebrate 3 years since my transplant and my life is back to normal. It can happen. Do your best to stay positive!

      Dan Gennari

  30. The Wife says:

    Just wanted to stop in and leave my prayers for you all, and for my husband. Dan your story was very interesting and enlightening One commonality I see in a lot of these stories is the rash, the itch, etc… my husband started with a horrible migraine that lasted from November to January, then he got mursa, in his knee, that has healed. About 2 months ago he started to get idiopathic hives, which start in a different place on his body most of the time, but recently have been starting in his ankles and feet everyday. He went through all the allergy testing and so forth, to no avail..On his lab work it was noted by his primary and by the allergy Dr, that his liver count was just a tad bit high, so ruling everything else out, sent him for a ultra sound on his lower abdomal area, this showed some “cysts” in that area so they did a CT scan, now today, the nurse calls him tells him those are nothing to worry about BUT, she said a big BUT, they did see a “bump” she called it on his lung, he goes back Friday to have a ct done on that area, so please pray for my husband that we don’t have to use the C word, So many Dr’s have siad these hives have no rhyme or reason and should not be worried about but 75% of the stories here have had some kind of rash or another at onset, or as a “sign” of something worse coming but the Dr’s are so ready to just say, yes its miserable, but prednisone will mess up you body worse, but its the only thing that makes the rash go away? Anyway Good Luck to You All!

  31. jett says:

    hi, I am 12 years old and I have wondered if I may have lymphoma or another bad disease. ever since 7 years old, I have experienced random anonymous pains all around my body including my spine. a few days ago I had a cold, or at least what I think is a cold. I still have it 3 days later and it has gotten worse. my throat, (like it has been for a few years), keeps tickling like you said, a feather or something but I just cant get it out. I feel it as I type this. I am slightly scared by all of this. my head also hurts when I cough and I will be seeing a doctor in a few days. and I have had random rashes before.

  32. Susie says:

    I have had hemolytic anemia for almost 40 years. My primary physician thought I would develop lymphoma but never did or at least that what I thought. I have a lump that comes and goes under my right armpit, nite sweats, cough and legs that give me fits…itching, swelling and a rash.

    I have been to see several hematologists…they told me I have lupus…but I may be wrong but I will bet that my primary all along was right.

  33. Lisa says:

    Thanks for your story Dan! I found it while trying to find out how much longer the night sweats and sweaty palms will last. I finished chemo & radiation for stage 3 Hodgkin’s Lymphoma two years ago but still sweaty, which is completely disgusting! I found it interesting that everyone has the cough! I never related that to the disease, although it’s much worse since treatment. I always assumed I had bad allergies. I never had any rash but had a low grade fever for about 2 years before diagnosed. A lump appeared on the left side of my neck above my collar bone, about a week later a lump appeared on the right side of my neck. No pain in either lump. After a needle biopsy didn’t work, they took the lymph node for biopsy. A bone marrow biopsy finalized the diagnosis. I went to the doctor originally for the lump in November but because of all the holidays was not diagnosed until February. Six months of chemo started one week later and daily radiation treatments for 30+ days after chemo ended. Happy to be alive and well but wish the sweating and coughing will stop eventually!

    • Hi Lisa,
      I still have some coughing and I just celebrated 3 years post transplant. My doctor tells me it is most likely from the radiation. Because the radiation was also striking the esophagus and airway, there is tissue damage that might always cause some coughing and irritation. It’s very minor for me though. It’s usually feeling like I need to clear my throat. I don’t get the night sweats though. That has been gone since early in my first few months of chemo. Have you asked your doctor about it? How old are you? Could it be menopause?

  34. dionna soto says:

    The same thing happened to me..I was diagnosed with lymphoma when I was 16 and it took a lot of tests and doctors to find out what was wrong with me..the best thing to do is just keep your head up and remember that your strong enough to do anything you put your mind to..cancer isn’t always a death sentence but younknow your body better than anyone else if something feels wrong turn you need too see a doctor. I was in stage 2 and 1/2 when I was diagnosed and ive been in remission for almost 10 months after having a relapse and a stem cell transplant! Keep your head up guys and best of luck!

  35. J says:

    Hi I’ve been having severe pain in my right side near my groin and pelvic area, which shoots down into my leg sometimes causing me to limp as the pain is so bad. Sometime the left side hurts but not as often.

    I’ve also been having the full body itching with no sign of a rash and a very very sore head feeling tired and unable to concentrate. Also really bad sweats mostly sat nighttime sometimes during the day.

    Wether this is relevant or not the bone at top of my spine connecting to my neck aches and is sore to touch and sometimes when you touch it the pain shoots and s
    Tingles right den my spine.

    Anyone unable to understand this ? I don’t , does it all link ? Arghhh don’t know what to do.

  36. Melissa says:

    Hello I’ve been reading everyone’s comments trying to figure out what’s going on with me and my doctors seem to think I’m crazy. It all started lasted year I had and still have a swollen lymph node on the back side of my neck which caused me a lot of pain, feeling of weakness, itchy skin dizziness they did a cat scan and blood work everything came back fine so I left it at that. Now about 2 weeks ago I started having a heavy feeling in my left leg along with numbness and constant pain, sweating, severe itchy skin, dizziness, and just a weak feeling. Than on thanksgiving I found another swollen lymp node on the left side of my groin area. I have went to redimed and was diagnosed with lymphanitis and everyday I feel worse so I went to ER and they did blood work and it was normal told me to go home. I just went to my family doctor yesterday and he did more blood work to check my thyroid and told me to continue to take my keflex I was prescribed and I go back on dec 27th. He had measured the lumps they are not huge but they are still there and still have all these unexplainable symptoms. I don’t believe it is lymphanitis. My question is if I go back and they say everything is fine and the lumps are still there should I demand a biopsy on the lymph nodes to see what’s going on. I also forgot to mention I have this fullness feeling in my stomache and don’t eat much I have lost about 10lbs within the month and weigh about 115. I am 27 years old good health other than I smoke. It very well could be something simple but if the lumps and symptoms don’t go away I want answers and am looking for advice. Thanks

    • Melissa,
      I strongly urge you to ask the family doctor for a CT scan and tell the doctor you think you have lymphoma or leukemia. Even if it turns out not to be cancer, I think it would be risky for a doctor to tell a patient with your symptoms they are wrong. And if he does insist that you are fine, get it in writing. Sometimes primary care doctors are so busy and so overwhelmed with people complaining of small problems and allergies, that they don’t stop to consider a healthy looking 27 year old might actually have a really serious problem. This is one of the reasons why the young adult cancer community has not seen as much progress in successful treatment as other age groups.

  37. Kit says:

    Hi there…. Was looking for info and found your site. 46 F, had a rash that started on my arm. When it started to itch and spread, I thought hmmm poison ivy? Dr 1, prednisone shot. Rash spreads all over legs, stomach, chest and arms, very itchy. The was in Oct. Rash got better then came back on my ankles and legs and forearms. Now I have a lump in the right side of my neck. Very painful and still have rash. Called Dr 2. Told to take 4 ibuprofen and if not better in a few days to call back. Took meds and now rash, painful lump in right side of neck, and painful left shoulder down my arm. Thought I was having a heart attack last evening, didn’t sleep much due to night sweats and pain. Took 3 baby aspirin. Went to work and called dr. Was told they could fit me in but I couldn’t get away as had a meeting. Hard long 13 hour day. Came home, no appetite all day…come to think of it none for weeks. Weighted myself, down 9 lbs in 2 weeks. Toes have been cramping and calves were very painful several weeks ago. Toes still cramped tonight while getting in warm bath with eosin to ease rash and painful shoulder/ arm. Tonight I made a potential connection, lump in right neck seems to be affecting left shoulder. When I press on the painful lump my should stops hurting. Dr appt next Wednesday with dermatologist for rash…. I am praying just an infection but my gut says it’s more. Body has not been right since mid Oct.

    • Thanks for sharing Kit. I’m no physician, just a hotel and travel industry geek. But in my opinion, you ought to cancel the dermatologist and go straight to an experienced primary care doctor. Share all the symptoms…don’t leave out anything. And tell them you think it might be Lymphoma. At the very least, that might snap them out of the regular thinking of their 5 minute per patient visits and make them really study your symptoms. You have most of the classic symptoms of Lymphoma. And I find it very interesting you have cramping in your feet and calves. That happened to me at night, but I don’t think I ever wrote about it on the blog. I would be lying in bed and if I did a whole body stretch where my toes would point down, I would often get a sudden intense cramping feeling through my lower legs and feet. That all stopped after a few weeks of chemo. As I mentioned to another reader who posted a similar story yesterday…I am not trying to be a downer, but you happened upon this site and something about my symptoms sounded familiar to you. Get to a real doctor and get bloodwork and a CT scan. Something is wrong inside. They will figure it out. And if it is cancer, get yourself to a full blown NCI Cancer Institute. Vanderbilt is a good one.

  38. kirstin ellis says:

    Hi, ok so im 22 and was diagnosed with rheumatoid arthritis when i was 18 ,i also have these huge lumps on my legd thst hurt wht should I do?

  39. Ace says:

    Hello,
    Thanks for sharing such a descriptive trajectory of your condition. Your blog was very educational due to such specific details. I hope and visualize your health improving and health being your reality.

    I was hoping you can share your thoughts on my scenario. I have been having a cough for about three months. It started out as a cold, but I never visited a doctor. I live in a cold area, and I have done a poor job putting enough layers to stay warm. I also have been a regular user of cannabis throughout my cold and cough. I don’t have any night sweats, or rashes of any sort, or lost any weight. When I use an inhaler my cough subsides. The doctor I went to see just put me on antibiotics to eliminate any phlegm residue. I might of have some pain in the groin as a result of lot of coughing, but that was for a week when the cough was at its worse, and since then no pain in my groins have returned.

    Although you are not a Doctor, I would appreciate your thoughts on my scenario.

    Thank you.

  40. Stephen says:

    Hi the wearied thing is that I’ve had about a glass and a half of wine and should be fast asleep but yet I was awaken by my wife and anyway rolled over.

    To my amaze I scratched the under arm in half sleep mode and was promptly brought back to awaking time.

    The problem is not only the lump that I just found under my arm put just about an hour ago but the other problems I have been experiencing over the last number of weeks,

    Three weeks ago I went to the doctor with what I would describe as a vice grips clamping on my head and feeling pretty shit. The doctor told me that i am suffering from cluster headaches and put me on anti inflammatories and said that the headache should go away in a few days and if not come back to discuss long term meds.

    I do suffer from high blood pressure and cholesterol, I smoke and I also LOVE a good pint.

    Hears the problem! The headaches I think have stopped only today for the first time but my face and my ears are from time to time are burning, I’ve got a strange feeling in my stomach as if I’m hungry or something and now this lump under my right arm that doesn’t hurt!

    I’m lying here in my bed! It’s 3:22am and in a little freaked out, I’m due to play golf tomorrow with an old pal and guess what he had skin cancer! Am my off the mark or am my just a messed up Irish hyp: what ever is the word.

  41. Mommy of three says:

    I just have a few questions for you. I have been having a lot of fatigue lately. I went to the doctor thinking it was just maybe a thyroid issue since this runs in my family. She did order a CBC and Thyroid panel which all came back cleat other than my Lymphs came back high at 48. All other blood test where within range (WBC, RBC)

    I have had lots of other symptoms I didn’t mention to the doctor because I don’t want to sound like a hypochondriac, but here a small list of the symptoms I have been having. Can you tell me if any of these sound familiar or appear to be something you experienced.

    1) Irritating itching all times of the day mainly on my feet, shoulder’s, back of my neck and under my arms. (There will be a rash but only for about 30 minutes then it gone?)
    2) Fatigue
    3) Body aches mainly in my lower abdomen (pelvic area) lower back, not really on one side more than the other.
    4) Headaches everyday
    5) Swollen hands and face (This is on occasion)
    6) Cold chills

    I know you are not a doctor but I was just curious if any of these ring a bell to you or anyone else that may read this. I don’t have insurance and really can’t afford a lot of test so I am trying to get as much information that I can. I know a high Lymph can mean a number of things but my doctor didn’t seem to concerned about it.

    Thank you again in advance and I pray for you and your family.

    • Going to the doctor and not giving them the whole story is a waste of time. Sorry, but it’s true. They can only fix what they know about. If you were to have cancer, or a tumor, and you don’t tell them all the details, this is what will happen. Your cancer will keep growing until it is unbearable anymore and you will be forced into the hospital where they will discover stage 4 cancer which means it is metastasized and has spread from its original location into other unrelated organs and systems. I’m not trying to be a jerk, but that’s what happens when people ignore their symptoms. It happened to me. My Lymphoma was found at stage 3 and there were spots of it throughout my abdomen. I got lucky that it had not gotten into my bone marrow, because that was next. Get some insurance and get to the doctor. Write down every symptom before you go and hand that paper to the doctor. Lucky for you, ACA “Obamacare” is in full effect now and carriers have to take you and they won’t be able to drop you if it turns out you have cancer.

      • Marykay says:

        Hi, Dan My brother found a few lumps on his neck about 6-8 months ago and he went to the Dr and he said it was probably mono and sent him home. 2 weeks ago he said to me that he still has these lumps and also several more has appeared. He has several in his armpits behind his ears down both sides of his neck at his waist line and in the groin area. Encouraging him to make a Dr appointment he was seen a week and 4 days later the Dr calls him and tells him that he needs to go in for a ct scan the next day that they think he may have lymphoma . After this ct scan he then is told he needed a second one and then he needed to see a surgeon that same day which then he needed to be at the hospital the next morning for a biopsy which they removed a lump from his armpit and also from his groin. We are now waiting 5-7days for the test results. The Dr came in to tell me that he was out of surgery and that his body was full of infection or full of cancer. I guess my question is… 1 what kind of infection could this possibly be? And
        Second question is did you have many many lumps like my brother has? My brother has pretty much decided that it is probably cancer because otherwise if it was an infection why the rush rush thru all of this process and why are they not putting him on medication if it could be an infection. I am so worried for him. If you have any advise it would be very much appreciated. Thank you.

  42. Kat says:

    My heart breaks for all of the scared people crying for help on your blog. I really respect that you’ve tried to help them as best you can. Thank you for doing that!

    I will say this, I don’t like the President much sometimes, but I am so glad that healthcare reform has passed. People need to be able to see a doctor when things like this come up.

    Great blog, and I hope you continue to live cancer-free!

  43. Ingrid says:

    Hi! Thank you for sharing your story! Well I had thyroid cancer in 208. They only removed half of my thyroid. It was Hurthle cell carcinoma. Then in 2010 they removed a lymph node on my face near my left ear but surgeon said it was fine. They never did radiation or anything and even after both surgeries I’ve never felt well, even when they put me on thyroid hormones. Well in 2010 I also found out I have another thyroid nodule on the right thyroid lobe. It started at 5mm and now it is about 2cm in size. Beginning two weeks ago out of the blue, I couldn’t get out of bed anymore and now two weeks later I can barely walk. I get weird bruises on my feet and legs. Also around my elbows. My joints hurt so bad I cry. I also have a really bad discomfort under my left ribcage and I have no appetite but I force myself to eat at least once a day. I do not have night sweats, well not as bad as you did. But the cough is there and I’ve been having his cough for a year! I feel like nobody listens. Also my left armpit is swollen. And I have a small nodule on my left ribcage. That’s pretty much it. But nobody gives me answers. My blood test were fine. My feet hurt so bad there are badly bruised like someone hit me. Thanks for listening and god bless you for sharing your story!

  44. tanu says:

    Hi

    Thank you for the post. Hope you are in good health right now. I have been through chemotherapy and radiation for the treatment of lymphoma and I am just 24. Its been a year since my treatment. I have been alright since then. Its only been a couple of months that I randomly have this ticklish feeling in my throat. But it goes away whenever I drink some water. So I have been amounting it to the dryness of the throat. So wanted to know were your coughs any similar.
    Thanks a lot.
    Ps its nice to see how you respond to each and every comment. God bless you

    • My cough always feels like I need to clear my throat. It was much worse back around the time of treatment and even for a year or more after my stem cell transplant. I still have it a little bit each day. My doctors haven’t been able to figure it out and even did a full GI scope all the way from mouth to stomach. At this point I am wondering if maybe I’m just allergic to my dogs!!

  45. beautiful says:

    Hi, love that you all have shared your stories.I’m a 42yr old wife an mother of 5 girls. I am in stage 4 renal disease. I have hi bp, anemia. I had a tumor removed from my throat in 2003, non cancerous, but I have something called ameloyodis. I have sarcoid. About 7 yrs ago I was treated with chemo for my renal disease, didn’t work. I have been suffering with stomach pain an extreme fatigue, an horrible itching, for the past 2 yrs. Have had every test, no help. A couple of wks ago I found a lump behind my knee on my leg, only because it was itching. It went away. Now I found one on my collarbone. Again because it was itching. Went to the dr, he ordered bloodwork, I’m nervous. Can’t stop, driving myself crazy

  46. Kimberly says:

    I’m a 30 yr. old female. I recently discovered an enlarged (maybe the size of a penny) lymphnode on my right groin area. It’s painless (worrisome) and rubbery (like a lymphnode). There’s another pea sized lymphnode beside it that’s been there for years.

    A year ago, I found a lump in my breast yielding no signs of cancer, according to Ultrasound and Mammogram. I opted for the excisional biopsy, anyway (same results).Now, I have this enlarged lymphnode. I’m worry a lot about my health, but there’s no denying that this lump on my groin area exists.

    Is this lymphoma??? I do have a broken out rash area on side of my back. I’ve been working out a lot on the elliptical, though.

  47. I’ve been surfing online more than three hours today, yet I never found any
    interesting article like yours. It’s pretty worth enough
    for me. In my opinion, if all web owners and bloggers made good content as you
    did, the internet will be much more useful than ever before.

  48. Thank you so much for sharing your journey with us all in such detail. Although I don’t think I have any of the illnesses written about in the long list of comments, which are also fascinating, I came across your blog whilst researching a recurring itchy upper right arm and minor sweats in the early hours of the morning.

    If I have learned nothing else from all this, I have at least realised how important it is not to ignore things that recure and not to let a lack of answers stop one from continuing to ask the questions.

    Sending love and healing thoughts to you and to all those who have commented here.for a total and lasting recovery.

  49. Courtney says:

    Hi Dan,

    Your story is very interesting to me because of how many times you were sent away from a doctor with a script of some sort.

    My friend Chloe is 14 years old, and on August 4 last year, she was diagnosed with a Stage 4 medulloblastoma brain tumor. I don’t know if you know what medulloblastoma is, but is a highly aggressive, malignant brain tumor that grows on the brain stem, and is only diagnosed in children. It is the most common malignant brain cancer in kids today.

    Chloe’s symptoms were severe headaches which later became chronic pain, neck pain, insomnia, personality changes, vomiting, and loss of coordination, as well as minor dizziness and fuzzy vision.

    Her mum dragged her to every paediatrician in Perth and every one of them told her it was just puberty, that once her hormones settled, she would be fine. Two doctors diagnosed her with a C2 neck joint inflammation and gave her anti inflammatory medications.

    She had one MRI ordered, but it was taken with Chloe lying face up on the table, which is useless if you’re looking for something causing pain at the back of the head. It was August 4 when her mum had enough and took her to the children’s hospital, where she persisted and persisted that Chloe have an MRI of the back of her head. And low and behold, they found the tumor. Four months after Chloe first complained of symptoms.

    By sharing this I’m not saying the doctors you went to were useless, or you should have been diagnosed faster, but it’s astounding how long it takes for someone to think, ‘hey maybe I should look for this’. Obviously your symptoms presented sporadically over a period of time, which is understandable.

    Chloe is going very well. She’s got two rounds of monthly high dose chemo left, and she’s had 31 rounds of radiation. She’s in good spirits and makes you smile when you are around her. She’s an inspiration to me, seeing as she had to learn how to walk again once the tumor was removed. Her walking is definitely not fantastic, she requires a walker, but she is moving around on her own, and that is a huge leap.

    I loved reading your story, because reading the stories of people who have beat the devil disease is extremely inspiring to me. Chloe’s story may not be relevant to yours, but I like to share her story with as many people as possible, because to everyone who knows her, she is absolutely amazing.

    And now, having read your story, so are you 🙂

    • Courtney, I really appreciate the time you took to share Chloe’s story and I am relieved to hear she is doing well. Your story was actually a bit suspenseful until the end when you revealed she is okay. While I still feel the modern semi-detachment from stories on the TV news about people who have died in car wrecks and other tragedies, I experience the opposite emotion when I hear of other cancer warriors who have lost their fight. Especially when they are young. I have lost child and young adult friends over the years I’ve been writing this blog and it is ALWAYS painful. So, it is equally satisfying to hear a success story. – Dan

  50. Lynn says:

    Your story is very informative and I thank you for sharing it with us. My co-worker was diagnosed with stage 4 cancers (she has two types}. She too experienced pain in her side (as well as other places) and was sent home with a diagnosis of pleuresy. I cannot tell you how many trips to the doctor she made, only for the cancer to go undiagnosed. And when she is finally diagnosed, it is too late.

    To all who read, be vigilant and do not assume the doctor knows best.

  51. m27 says:

    Hi Dan,
    First of all, thanks for sharing!
    I stumbled upon this post while searching for the itch after finishing the treatment for HL.
    I was diagnosed with the same disease (stage 3) in late December 2013 and it also started with itching around the ankles which then became a generalized itch soon afterwards.
    I want to ask you something: I finished chemotherapy 2 months ago. Soon after that I experienced a mild itchy sensation at the left ankle which immediately have me a panic attack. I had a PET scan done afterwards (pre-scheduled some months prior to the itch) and I got the result 3 weeks ago and it says i’m clean. The thing is that yesterday it started again, the itch. I am starting to freak out about a relapse. My family is trying to calm me down that it’s psychological coupled with mosquito bites (indeed, there are a lot of them around). I’ll see the doc only at the end of October and the question I have is whether you also experience itching after finishing the treatment and/or whether you also had some fears after the treatment and how you have been handling it.
    All the best,
    M27

  52. First of all, I wanted to say thank you for sharing your story with the world. It takes a lot for someone to be so open as you have been and it is truely appreciates.

    I am very word worried (as I am a self-diagnosed hypochondriact) because It has been 10 weeks month since was diagnosed with sinonbronchitis (a sinus infection and bronchitis) and my wheezing is still existent.

    So my question to you has to do with you wheezing that you had experienced. How long did the wheezing last? And was a painfull feeling in your chest while breather the only related syptom? Any sputum?

    Thank you so much and I hope to hear from you soon!

    Joshua

  53. Nice blog! Is your theme custom made or did you download it
    from somewhere? A design like yours with a few simple adjustements would
    really make my blog stand out. Please let me
    know where you got your design. Many thanks

  54. jo says:

    Hi Dan

    I.just wonderedif a CT would be enough to diagnose or if a biopsy is needed?

    For the last 5 mnths ive had a cough -feels like I need to clear my chest but when I do, I can’t cough it out. Also a lump in the back of my neck and two in my jaw. Strange feelings of heat down one leg (nerve irritation), extreme weightloss (4 st in 3 mnths).

    Bloods and chest xray normal and awaiting CT….

  55. Leslie says:

    Hello and thank you for sharing. For over two years, I have had several unexplainable symptoms. It all started with numbness and tingling in my foot, which traveled throughout my entire body within thirty minutes, including my head. I had severe itching at night in my lower legs, which prevented me from sleeping. I had a few episodes of not being able to swallow, even liquid, which was very scary. Had blurry vision. I had an MRI of my brain as doctors suspected MS, but results showed nothing. Two years later, the itching in legs only, has escalated to my entire body…sudden bouts of crazy intense itching. My back, legs, upper arms, hands, stomach, even my face and neck. I am also having severe headaches that are in my face and one whole side of head. I noticed my very clear skin is starting to get pimples which I’ve never really had. And I had terrible case of bronchitis last month and even steroids and antibiotics didn’t help. I’m still coughing up phlegm several times a day. Having coughing attacks at work. A few times in past two weeks I’ve woken up with a wet shirt from sweating. I hardly ever sweat. I feel exhausted even after sleeping ten hours. I can go all day without eating and I used to eat all of the time. My grandmother died from lymphoma and my dad died from dermatomyositis (rare autoimmune disease) at the age of 50. I’m pretty nervous about my symptoms. What do you think. I know you’re not a Dr, but do any of these things besides what you listed in your blog sound familiar? Thank you and I hope all is well.

    • Hi Leslie. You are right, I am no doctor, so don’t take your medical advice from me. No doubt, something is up with you. My recommendation is to visit an experienced doctor, and present all these symptoms at once. Don’t let them rush you, or interrupt you to much. They will try, but you have to force them to listen. Emphasize that you are concerned you may have a cancer. Every Lymphoma patient has a different set of symptoms, and most of those symptoms can also be caused by numerous other conditions. Only a CT or PET scan can reveal where Lymphoma is hiding, and then, only a biopsy of that tissue can determine what type of Lymphoma a person has. However, some of the symptoms you describe are included in the list of “classic” lymphoma symptoms. Coughing and night sweats are two of the biggies, so you are correct to be concerned. Get a doctor who will listen to you, and get a good diagnosis. If it does turn out to be lymphoma or any other cancer, my next advice is to schedule a consultation with a doctor at your nearest NCI Center of Excellence. Use this link to see the directory of all of them in the US http://www.cancer.gov/research/nci-role/cancer-centers/find. Even if a patient chooses not to get their treatment at one of these centers, I always urge new patients to at least here what course of action one of these hospitals would take because they are the best in the business.

      Good luck. Let me know what happens.

      Dan

  56. Leanne says:

    G’Day,
    I was interested in your story, and you are right, people do ask how are you, not only because they are concerned for your health, but to know what ifs, what if I have the same symptoms etc. I’ve noticed it with my thyroid condition, and when I had two shoulder operations for torn tendons and rotator cuff problems, so guess it happens to us all regardless of the condition.
    I have simular symptoms, the constant cough, sometimes choking, nagging itchy cough that is now persistant throughout the day also, itch, my god the itching drives me nuts, lower back pain if standing for like 10mins, along with other body aches, some symptoms I attribute to carpel and or cubital tunnel syndrome, specially because I get burning feelings in my hands. But lately the constant itch, cough and now exhaustion has me questioning maybe, just maybe there is something else going on. The thing is, I have no lumps, nodes swollen, I do get swollen and occasionally sore under my jaw line, the dr has felt but to me he never seems to feel in the right place, OR at the time I visit, the swelling decides to disappear..just my luck grr. I guess I only have a question or two…
    Does Lymphoma always have a visable lump? (google god Dr doesnt seem to want to answer this for me..), and would you suggest I just go to my GP? Am not really sure if I am just being paranoid because of other conditions I’ve had in the past, nor am I really sure how to ask the Dr to test for Lymphoma.. I think also I will sound like a hypochondriac. I’ve never heard of Lymphoma without swollen visable lymphnodes. What do you think? (Ps. I understand you are not a Dr. But maybe you’ve heard about other symptoms that dont involve swollen lymphnodes that did indicate a Lymphoma diagnosis.. no harm in asking hey 🙂 ).
    Cheers
    Leanne

    • Hello Leanne,
      Thank you for the comment. I cannot say definitively if Lymphoma always has a visible lump. I would imagine it is completely possible for a lump to be disguised under other tissue, muscle or bone and therefore not be visible. The way you wrote “my god the itching drives me nuts..” is why I am suggesting you should indeed visit your doctor. I don’t think there is anything wrong with telling the doctor you want to investigate for Lymphoma. But make sure you are ready to explain why you think Lymphoma should be considered. Write down a summary of all your symptoms before you get to the doctor. The doc won’t be able to make a diagnosis based on a routine exam. They will probably want to take some blood to examine white cell counts, and then they will also want a CT or PET Scan. The itching was the worst symptom for me, and there just wasn’t any explanation for it. Trust your instinct and get checked out. Let me know what happens.

      – Dan

  57. Leanne says:

    Hi Dan,
    Thanks for the reply 🙂
    I did end up going to my G.P, he has ordered bloods etc, had a chest x-ray, Dr said lets first see if the chest x-ray is clear before anything else. And the bloods he says are being tested for any sign of infection also, he believes the lumps to be nothing to worry about because I have had them for some time, but I am having them scanned also (ultrasound). I developed a few more symptoms, he is looking into, he is not sure about the itching, but I have an appt with a dermatologist to rule out skin probs before he considers anything else. I guess he is in a process of illimination at the moment..now I just haveto wait for results of first round of tests. The good thing is in Australia, we get these tests relatively free.
    Cheers again for the reply 🙂
    Leanne.

  58. Shell says:

    Nov. 30, 2015 my dad was admitted to the hospital for a cough like nothing we had ever heard before, siezures and fatigue. On Dec. 5th they placed him in issolation after a chest xray showed tiny wide spread tumors. They tested him for TB, Valley Fever and several other infections. Dec. 7th they took him off issolation and a spinal tap, lung biopsy, colonoscopy, endoscopy, brain scan, ct of lungs and brain where ordered. on Dec. 11th I went to his RN and demanded the doctors come and give us some answers. They told us widespread, terminal cancer but they didnt know what the primary cancer was. On Dec. 15 they moved him to a Comfort Care Suite on a differant wing of the hospital. His decline was rapid on Dec 21st after being in acoma for two days my mother and I sat while they turned off his pacemaker at 12:30pm. We called our family and close friends to his bedside. My dad took his last quiet breath at 5:32pm. He died at the age of 62 the day after his birthday and only 10 days after being told he had cancer throughout his body his brain and lungs were bleeding. The heart break and confusion are so real.

  59. John says:

    Your story is the only thing on the web that has had any value in all the looking I have done to understand what I’m going thru.
    I had 2 isolated episodes of explosive hives I thought were food allergies.blood work is showing high wbc with”slight”
    Smudge cells. And has been raising gradually over the past 8 month.i had what appeared to be a bad cold,which could’ve actually been pneumonia for about a month which seems to have
    Gone away and just yesterday found what feels like a tender,slightly painful to the touch area of skin on my left chest area just under my armpit….my dr is sending me to a hematologist and I’m pretty much scared to death…I’m a 51 year old man who has suffered from allergies all my life so I’m used to always having a cough or clearing my throat and generally feeling like crap.looking for any insight anyone may have,and wishing a you all peace and good wishes,as the fear of the unknown is really playing with my sanity

    • Hey John, thank you for writing. I am especially grateful that you found some commonality between my story and your symptoms. I remember that feeling of searching and searching trying to find some validation for all the weird symptoms I had. I would never tell anyone they do or don’t, might or might not, have cancer, but based on what you wrote here, I agree it is worth getting checked out by a hematologist. Your symptoms are similar to Lymphoma symptoms, but then, so is pneumonia and plenty of other maladies. But a hematologist will at least be able to rule out Lymphoma and give you some good experienced advice on what to do next. Hang in there.

      – Dan

  60. John says:

    Dan,thanks for your kind words.l had my hematology appt on Wednesday.they did more bloodwork and my wbc was still kind of high.as I was being examined by his assistant I was flipping out and I said to her”so my spleens about to explode isn’t it?,to which she replied with a laugh”I can’t even find your spleen,dude you need to relax”at this point her and my wife are looking at each other and she says”you’ve been on the damn internet driving yourself crazy haven’t you”?…with that they begin to discuss how
    That can be a way of making yourself nuts.So now the dr comes in and says that from what they can see,feel and hear he can’t imagine by how I look that there’s anything too terrible wrong with me…they have to go deeper into the bloodwork to get all the real info and at very worse I may be looking at chronic leukemia.
    He then begins to explain that most people don’t even require any treatment for years and years and if I did need treatment it’s a very treatable disease.So now I’m waiting til next Friday to get the final results and I’m still kind of nervous.chronic leukemia is cancer of the blood,which is not curable.from what I’ve read there’s a lot of “watch and wait”and retesting every 6months.
    So now I’m just trying to keep myself calm waiting for 2-12-16 when I go back to hear the verdict.thanks for your reply,I have NEVER joined a blog(?) in my life and wasn’t even sure I would be acknowledged.THANK YOU, GOD BLESS YOU my friend
    I will let you know how it turns out

    • John, listen to the nurse and relax. If it turns out you do have leukemia, then keep this thought in mind…you’ve had it for awhile, and you are still here. Here is more free advice…most of my cancer friends who have dealt with the disease for months or years, eventually learn that cancer is unpredictable. Doctors do their best to re-assure you, and make a plan, but the disease does not play by a prescribed rule book. It changes over time, and the good doctors are the ones who know how to move with the disease, and to adjust treatments to keep up with the disease. And the good patients are the ones who understand they need to stay flexible as well.

  61. suzie says:

    It’s 3 AM and I am obviously very concerned about several symptoms I’m having. I’m just too exhausted to write my ‘story’ tonight, but do want to tell you this is, by far, one of the best blogs I’ve ever read. God bless you for sharing your story so openly..just had to tell you how awesome you and other’s on this blog are. Hopefully will be able to ask your advice and perspective on my personal struggle, a ‘mystery diagnosis’ that I’ve had for going on 3 years now..so ill, so scared, so glad to have found you, and other’s here.

    • Have you visited a doctor yet Suzie? Things changed for me when I made a decision to present every single thing wrong with me to a doctor. I didn’t offer my opinion of what the problem might be, I just gave the doctor facts. And he figured it out right away.

  62. Katy says:

    Again, Google results come up with lymphoma. I’m sitting here, awake in the middle of the night with a headache, lumps on the back of my head, and my shirt wet from sweat. I truly thought a glass of water must’ve fallen from the shelf above my head and cracked me good. My headache woke me from a dead sleep. I haven’t had any rash symptoms, but have had various swollen lymph nodes over the past few months. First, right side of my groin and behold right ear. Then armpits, then left side of groin and behind left ear. Now base of neck and night sweats. General fatigue for months. Over the past two years, I’ve passed out twice, almost breaking my nose in the fall once. Blood tests come back with high WBC, high lymphocytes, and high RBC. A week later, back to normal.
    Thanks for your narrative. I’m going to keep making doctor appointments, maybe persistence will pay off.

    • Katy,
      Sorry I didn’t respond sooner. I’ve been on a little vacation. Why do you say you will keep making doctor appointments? Are the doctors you have seen not addressed the possibility of Lymphoma? Your symptoms sound very familiar to me. I like the descriptive angle you have taken with the night sweats. I would have never believed it was possible to sweat that much while sleeping until it happened to me over, and over, and over! And, I don’t think I mention this in my original article, but I also got light headed before diagnosis. With all the medical treatments I’ve been through, sometimes I forget little details from the early days (my diagnosis was 7 years ago now…wow!!) Nevertheless, one time I was at the gym and the last thing I remember is putting my hand out to steady myself on a weight machine…smashcut to a minute later and there are people standing over me asking if I can hear them. Normally, on these replies I tell people not to worry to much, and to see a doctor. But you’ve gone far enough to have the symptoms, and you know you have high WBC and lymphocytes. What are you waiting for?

      Dan

  63. Elizabeth says:

    Your blog is very informative and I think this has and will help a lot of people, even save them!
    About two months ago my dad developed a lump right above the collar bone on his right side. That lump is about marble size and has stayed about the same size through these couple of months. It’s very painful for my day when I touch it and it does move around. Now yesterday I noticed that it seems a bit bigger not by much but a bit, also it seems like he has another smaller one coming in. Again both painful, he has lost a bit of weight and his taste buds seem off. Now he has also been struggling with a dry cough for a few weeks now. He doesn’t have any night sweats. I am scared it might be cancer and they have set him up for an ultrasound of his neck and thyroid.
    I know your not a doctor but can you please comment and maybe tell me what is your opinion.
    Thank you,
    Elizabeth

    • Hi Elizabeth,
      You are right, I’m no doctor, and my own experience is limited to only Hodgkin’s Lymphoma. No doubt, your dad should see a doctor. Encourage him to explain all the symptoms he is experiencing…even the ones which may be embarrassing to talk about. Here is what I can tell you about Hodgkin’s Lymphoma. It typically only appears in people from their early 20’s to mid 30’s. And then also shows up in people over 55. So, if your dad is between 35-55, he is most likely not experiencing Hodgkin’s Lymphoma.

      Dan

  64. Melanie says:

    Hi Dan, I came across your blog just like everyone else searching for an answer. I’m so pleased you continue to do well. My problem started 5 years ago with complete exhaustion and blood work showed I was suffering from pernicious anemia. Then came the night sweats 2 years later. I’m on b12 injections for life so I put a lot of symptoms down to that. Then lymph nodes came up in my groin so along with the drenched night sweats was sent to haematology for tests. Blood work all came back normal apart from the b12 but they still couldn’t explain the lymphs. One doctor told me if the bloods were normal he would want a CT done because he didn’t like the groin nodes. However I saw a different doctor after this and he said no to CT. 3 years later and drenched every night the groin nodes are still coming up and going down and now I’m covered in hives for the past 3 months around my neck with my left node on my neck enlarged too. I feel like I’m bothering my doctor like I’m some sort of hypochondriac but I’m a mother of 2 and 39. I’ve had enough of the sleepless nights from sweating and I did ask was it early menopause as I’ve only one ovary left after surgery to remove the other and they said my hormones where fine! Sorry to go on and on but I don’t know where to turn next.

    • Hi Melanie,
      Thank you for sharing your troubles. You are correct to be concerned. If you don’t feel right, and you “feel like I’m bothering my doctor” because of your symptoms, then I think you should see a different doctor. Before my diagnosis, I was told I had eczema, pleurisy, an upper respiratory infection, and a vitamin B deficiency…but the truth is, I had none of those things. I had Lymphoma. I had to go to four different doctors, but eventually I found one who took the time to listen to me, and consider all my symptoms. I think you need a different doctor. Let me know.

      Dan

  65. Kelli says:

    Hi Dan,
    I’m 39, a mom of 3 beautiful young daughters and very worried about my health. Back in late October 2015 I went to the ER for pain and tightness in my chest. They did a chest X-ray and blood work and sent me home with a nonsteroid anti inflammatory and said it was probably just chostochronditis. It went away after a week or so. Then in December I began feeling a achy like feelin around my chest collarbone area and my doctor assumed it was coming back again. Gave me a steroid pack. Did not help. January my doctor did full blood work. Everything normal,but thyroid a little high and Vitamin D low. Rechecked thyroid 2 weeks later. Thyroid was normal. In February called doctor and said that my chest discomfort feels a lot like sore lymph nodes like you get in your neck. I told doctor I felt achiness under arms and in neck. Doctor ordered ultrasound of chest,neck and under arms. Results came back with enlarged lymph nodes in all 3 locations. Considered “reactive”. Nothing to worry about. Not large enough to be worried about. Doctor had some kind of specialist look closer and told me does not show lymphoma. I thought that the only way to diagnose lymphoma was by doing a biopsy or ct-scan. My doctor said that my glands are not big enough to do a biopsy.

    Doctor ran a EBV panel came back negative. Only showed that I had a one point in my life,not active.

    I still do not have an answer to why all of these glands are swollen and tender. I’ve also been having issues with soreness in shoulders and hips and tiredness. I just want to know what’s going on. My doctor just started me on a strong 10 day antibiotic just to see if it does any good.

    I feel crazy. Should I be this concerned and should I be seeing a specialist other than my PCP?
    Kelli

    • Hey Kelli,
      I’m sorry you are not getting resolution to your concerns. You are technically at the high end of the age range for lymphoma, so that could be one thing causing your doctor to not take that concern seriously. But that does not mean it is impossible. There are plenty of statistics about all kinds of cancer, but the only rule I know of for sure is that cancer doesn’t have any rules. If your regular doctor is not resolving your problems, or giving you answers you are comfortable with, then go see another doctor. Where in the country are you? If you feel really strongly that you have some form of cancer, you might want to check out the facebook page for Stupid Cancer. You can connect with other young adults (categorized as 18-40 years old) in your region and ask them for recommendations of doctors who have experience with young adults. The young adult population is the most likely age group to have cancers missed or mis-diagnosed because so many doctors just assume we are healthy and probably just need a prescription of this or that.

      – Dan

  66. Faye says:

    Hi Dan, I came across your blog while searching symptoms I have, it’s difficult to find any real life information so thank you for sharing what has happened to you & I’m glad you are doing well.
    5 years ago I started with sweats and a lump in My armpit i was sent to the breast specialist who dismissed the lump said people get lumps, a couple years later i went back doctor said i had no lump but i instisted this time they gave an ultrasound & saw clearly a lump size of a penny but no biopsy done (as it was 5.30pm and they were packing up!). Symptoms now are Lump is bigger, armpit swollen, pain radiates there and from there in my arm anx hand, I have extreme fatigue (this fatigue hits me hard in the chest and then I can hardly do a thing, sluring my words, have to lie down, sleep), i bruse at nothing all the time (& are deep & large) itching all over my body at night my back head arms feet it drives me crazy etc im tired all the time, sleep alot but also get insomnia, have severe pain in my left collar bone and its swollen, night sweats that drench my back, i have back pain anyway due to degenerative condition but lower back is much worse and cervical is on fire throbbing at times, My immune system is low, had pluersy twice in 18 months & I apparently developed a heart conditon (sinus tachycardia) as I kept having this instant onset of exhaustion, palpitations, sweats, chills & fever and passing out (still not convinced its my heart) and feel exhausted and unwell when i came too.
    Over the past year I’ve felt like I’ve been going crazy, but reading your story and others on here I’m more convinced than ever that lump under my armpit is not right and has caused all my symptoms so am going to go back to my doctor & explain & ask for tests or referal back to hospital, are there any tests my primary care doctor could do to begin with?
    Sorry that was long, havent been able to confide in anyone.
    Wishing you continued good health.

    • Wow, you’ve been through a lot already. I agree with pressing your doctor for more tests. Have they done any lab work? A simple blood test can test your white blood cell count. If it’s elevated higher than normal, that is usually proof to a doctor that your immune system is trying to fight off something, and they need to find out what it is. The next step would most often be a biopsy, or CT Scan, or a PET Scan.

      – Dan

  67. Stephanie says:

    I came across your blog while online searching causes of night sweats in men. My boyfriend has been experiencing severe night sweats for the past three nights. Soaking the sheets. He is also cold and clammy at points during the day. He has had tenderness to touch in his back, along the spine and specifically up at the top near his neck.

    He occasionally has had chest pain, in the last few months as well.

    Did you experience the tenderness or pain in your spine/neck area?

    I have encouraged him to make an appointment with his doctor tomorrow.

    • Hi Stephanie, Thanks for reading. I did not have any tenderness in my spine or neck, but my tumors were in my underarms and chest. Lymphoma tumors can develop anywhere there are lymph nodes (neck, spinal column, groin, etc). You’re a really long jump from night sweats to a cancer diagnosis, so don’t panic. But, he should get to a doctor and present all the symptoms that are even the slightest bit unusual. A diagnosis rarely comes form the presence of one condition or symptom. But the combination of a presence of several different symptoms reads like a roadmap for a good doctor.

      Dan

  68. Holly says:

    Hello!

    Thank you so much for your blog and sharing your experiences. I found it while searching symptoms. I’m not one to worry when the occasional oddity arises and dismiss random symptoms as “nothing serious.” Recently, however, new symptoms have manifested and I’m concerned now that seemingly random symptom + random symptom + random symptom = cancer. I know you’re not a doctor and I’m not asking for medical advice. Rather, how I should handle my upcoming appointment with a new doctor. Also, I can’t discuss this with anyone so I’m grateful to have a place to say, “hey, I’m going through this an I’m afraid.” Here is my story…

    I’m now a 48 years old. About 5 years ago, I had extreme itching on my shins (one or the other or sometimes both at once.) The itching was so intense that I often scratched to the point of bleeding. I wanted to rip my skin off. I’ve taken an antihistamine daily for 10+ years (Zyrtec or the like) for allergies but this itching happened almost every night for 6+ months. I used anti-itch creams, cortisone, and spray antihistamines. It would keep me from sleep.

    A few years ago, while washing my face, I noticed a lump just below my jaw line beneath my right ear. I assumed it was a swollen gland but thought it was odd that it was only on the right side and I had not been sick or even had a sore throat. On my next routine doctor’s appointment, I mentioned it to my doctor who felt around a while before feeling it. All he said was, “oh, that’s weird” or something to that effect and “nothing to worry about.” Six months ago, I moved to a new state. I decided to seek out an internist instead of a family doctor because I’m getting older. During my first appointment, I mentioned the lump, she felt it, and asked if it was getting larger. I told her I didn’t think so and she that that was the biggest factor and not to worry. A month later, I was told that I had anemia an a vitamin B-12 deficiency after having some pre-surgery blood work (knee surgery.) I was told to take iron and B-12 which I have. I did find this odd because I have taken a B Complex for a long time and haven’t had a period for a couple of years.

    Also a few years ago, I noticed a wheezing sound when I breathe out. I’ve never had asthma or other breathing problems. During the last year or so, sometimes it feels like I can’t get a full breath. I chalked this up to being fat. The weeks after surgery, my breathing was more difficult and when I told the internist, she gave me an inhaler which I use periodically when I feel I need it.

    A couple of weeks ago, I noticed some horrible bruising on several areas of my body even though I could not recall anything that might have caused it.

    Last week, I woke up choking. It felt like there was liquid in my throat. After a long bout of coughing, it cleared. Also, again while washing my face, I noticed that the lump definitely seems to have gotten bigger. It doesn’t hurt, doesn’t move, and feels hard.

    This lead me to google which lead me to your blog. The internist has stopped taking my insurance so I have had to find a new doctor. I was unable to find another internist in my area who was accepting new patients so made an appointment with a family doctor. The appointment is 6/27 and I want to discuss these symptoms and my concerns but don’t want her to think I’m a hypochondriac. She doesn’t know me! Also, I have not lost any weight nor have I had night sweats. As for fatigue, I’m always fatigued so it’s hard to say if it has increased…

    How should I broach this topic without sounding like a crack pot? I want her to take this seriously because I’m seriously concerned.

    Thank your reading this and thank you in advance for any comments or advice you can give me.

    Holly

    • Hello Holly,
      I would be very surprised if your conditions turned out to be Lymphoma. Your age is wrong, your symptoms are not quite matching. But that doesn’t mean there is nothing wrong. I made a written list before I went to the doctor and I went through each symptom one by one. Do this at the beginning of the exam with the doctor before they begin asking questions. And tell them if you have suspicions. Tell them you want to rule out cancer, and thyroid disease. Don’t worry about them thinking you are a crack pot. You have to be your own advocate and speak up if you think something is wrong. Good luck.

      – Dan

  69. Sandy says:

    Hi Dan,

    Thanks for sharing your story, it was very well documented. It’s helping me decide if I should go see a doctor about my recent set of symptoms. I’m experiencing very low energy, painless lumps in the neck, spontaneous evening /night sweats, cough that has lasted now for 6 weeks, mild difficulty breathing, off and on discomfort in the chest (which seems to appear the day after I have a glass of wine) and starting to experience itchiness in my calves down to my ankles. My question to you is, after you discovered your lump, did it continue to enlarge until your treatment began to work or did it remain the same size? I ask because I have an obvious cluster of lumps in my neck that seemed to have grown to a certain point and stopped. When I was much younger (17) I had some trouble with unexplained node swelling and had 2 benign biopsies. Then later in my early 30s I had a benign breast lump removed along with another large benign mass in my neck. I’m 50 now and really don’t want to go through more biopsies/lump removals and waste Drs time if I don’t have to. If you’re wondering, I did begin menopause in my 40s after a complete hysterectomy but I haven’t experienced night sweats in a long time so I’m not sure if I’m having a recurrence of menopause symptoms or the sweating is related to the other symptoms. Th difference between now and the other ‘lumpy’ occurrences is the onset of these other symptoms. Back then I only had lumps. I’m just having difficulty deciding if I should pursue these symptoms with my doctor or see if they resolve themselves…how long do I wait. Thanks in advance for reading.

    • Sandy, I would definitely get these symptoms checked out. Go find a good doctor. Someone with experience. And present all the symptoms at once. Don’t wait for them to guide the conversation by asking a bunch of questions. Walk in and have your symptoms written down. Don’t make excuses for any of them. Just state the facts. Tell them you want to rule out any serious disease that might be causing all of the symptoms. Also, make sure they know if you are on any kinds of medications, but start with the symptoms. Good luck.

      – Dan

      • Sandy says:

        Thanks for your encouragement and advice Dan, much appreciated. The process has been started – my doctor sent me for chest x-rays, blood work and a lung function test and seems committed to helping me find out why I’m experiencing these symptoms. I pray it’s nothing serious. Take care and thanks again.

  70. Thank you for sharing your story. My son has been seeing an oncologist/hematologist for swollen lymph nodes that haven’t gone away for 4 years. All blood work remains normal with the exception of a slightly elevated sedrate off and on. The doctor said at this time it is a benign condition and it’s possible the lymph nodes crystallized during an infection and that’s why they haven’t gone away. I still fear cancer.

  71. Sarah says:

    I have been ill with viral infections supposedly for approx 2 + years, I have night sweats, these I’ve had for 3+years, for six months I’ve had a hard immovable lump behind ear ( not on ear but in crease above jaw) it has grown from pea size to a large grape size in those six months, but feels like it goes deep so can’t feel full size. I have a terrible ache in my hip at night – deep inside and the pain radiates down my thigh now too and it is actually causing me to walk funny. I ha e a flu ish feeling , dizziness, no appetite and have liked my weight so had to over eat (4000) calories a day sometimes to maintain it, but have decided to eat a normal 2000 calorie meals per day and have since (in 4 weeks ) dropped 20+lbs – i only weighed 162lb to start and now weigh just over 140lbs. I regularly have swollen glands that “pop up” but then go and re appear elsewhere. I have chest pain and a dull ache in my shoulder on same side of lump and bad hip. I have been referred for a neck ultrasound but actually feel like this isn’t going to show if it is lymphoma – would it ? My doctor is also doing bloods tomorrow ….. I am normally fit and well and never been in hospital but feel like something is really wrong as its been ongoing for so long now ?

  72. Billy says:

    Desperatell night sweats for the last few months, very bad chest infections last winter , 3 in total, several antibiotics and course of steroids to shift it, waiting to see a lung specialist, papers got lost, now everything beingoing fast tracked, back to my gp last week, noticed a 1.5 cm lump under my right arm, painless and I have no idea how long it’s there….back to my gp in 3 weeks……I am a male 53 and Baffled?

  73. Charity McCraven says:

    My son James just turned 45 in September 2015,while in the hospital dieing. He had all the same symptoms of lymphoma but was not diagnosed with it until it was to late. He suffered a horrible death. It breaks my heart every time I think about it.

  74. Steve says:

    Hi Dan,
    Thanks for your sharing your story and raising awareness on this terrible disease. I’m curious to know how often you used to get night sweats at the beginning (you mentioned at first it was occasional). Reason I ask is that I get night sweats around once a week but I can tell it is not normal sweating from heat because I completely drench the neck area while everything else is dry. Also I get itchy legs almost every night. I’m also always fatigued.
    Was your itching non stop at the beginning? Or was it occasional? And were the night sweats a weekly thing with you at first before becoming daily?
    I have seen several hematologists telling them I suspect lymphoma, but they all tell me they could not find suspicious lymph nodes and the only way to confirm a diagnosis is to find the swollen one and biopsy it.
    I would love to hear your input

    Thanks

    • Hi Steve,
      Good questions. Given the combination of your symptoms, I think you are being very smart to press the doctors for more information. If I had all three of those symptoms again, I would be going straight to my doctor. They are telling you the truth when they say lymphoma can only be diagnosed with a biopsy. However, very few doctors are going to recommend cutting into you to biopsy a lymph node without other evidence. Lymphoma first get discovered because of the symptoms you have described. A blood test may indicate some wacky white cell counts which will justify doing a scan. If you have formed a tumor somewhere, it can be seen on a CT scan, even though you probably will not feel a physical presence of a tumor. For example, mine was under my sternum where it could not be touched at all. While other tumors are in locations where one cannot help but seen and feel it, such as just under the skin on a neck. Once a doctor has proof of a tumor, then they will cut (or use a needle biopsy), to get a piece of lymph node and test it for lymphoma. I would continue to be persistent until you get an answer and a treatment plan to stop the night sweats and itchy legs. You would probably well served to seek out a hematologist/oncologist. Look up your nearest NCI Cancer Center (https://www.cancer.gov/research/nci-role/cancer-centers/find), and schedule a consultation visit with a hematologist/oncologist. If you have lymphoma, the docs in these places will find it.

      – Dan

  75. Gemma says:

    Hi, I have been reading through your story and all of the other comments for days now and the more I read the more concerned I am getting. I have had a swollen and very hard lymph node in my groin since the summer; it is not growing or painful, I have also recently started having severe itching all over my body. I found a lump under my armpit and was sent for an ultrasound at the breast clinic on Saturday where the radiologist said it is just a cyst but kept mentioning my lymph nodes and asking if I have been away or recently had the flu. He said they are on the larger side of normal but sent me away…
    I have fibromyalgia (I’m not convinced of the diagnosis) so am always having aches in my joints and muscles, I suffer with daily headaches and have had these for years so have been in and out if GP surgeries and hospitals for a very long time. I want to bring up the new symptoms of swollen nodes and severe itching to my gp but don’t want waste their time or be dismissed.
    Would a blood test show up potential lymphoma?
    Gemma

    • Hi Gemma, A blood test alone will not show Lymphoma. A blood test may give insight to abnormal white blood cell counts, but that’s the closest you will get. X-rays, CT scans and eventually a biopsy of the tissue or bone marrow are the only ways to medically diagnose Lymphoma. Your GP is not the place to get these tests. Explain to your doctor that you would like to rule out Lymphoma, and ask for a referral to a hematologist/oncologist. If you describe the enlarged nodes, and unexplained itchiness to a hematologist/oncologist, they will want to screen you for Lymphoma. Those are two of the classic type B symptoms. Other symptoms could include unexplained weight loss, shortness of breath and wheezing. In my own case, I would suddenly get dizzy or lightheaded when drinking alcohol. And I don’t mean that in a funny way. After one glass of wine, I would just suddenly feel like I had to sit down, and could not concentrate.

      – Dan

      • Gemma says:

        Thankyou for replying. I actually have an appointment with a haematologist this morning.
        I’m very nervous and hoping for the best.

        Thanks again for replying to me.

        Gemma

  76. Mistyb says:

    Hi, I’m a 40 yr old mom of 3 and a wife. I have lupus and fibromyalgia. I suffer with aches and pains alot already. Well I had to have a hysterectomy last week due to a cyst the size of softball. I go today to find out results . The dr said I was full of endometriosis so he removed that too. Plus had to remove my appendix it was so bad. Well I have had a knot in my right breast for 4 yrs and I’ve had mammograms that said it was all good it’s just a cyst. But lately I’ve been having shortness of breath and pains in both armpits but don’t feel lumps. I have had pain in groin for atleast 8 months now and it goes down my leg. I had itchy ankles about 5 years ago for a month or so it would come and go but haven’t had them since. I’m in recovery from surgery now and my anxiety is through the roof because most of the pain symptoms started a week before surgery like the shortness of breath and armpit pain. I’m just scared and need someone else’s thought on this.

    • Hi Misty, With multiple known conditions, and I’m assuming, a variety of prescriptions for post-surgery recovery, it might be difficult to pinpoint the source of a new pain or problem. If you suspect Lymphoma, then seek out a hematologist or ask for a referral to a hematologist from your regular doctor. Explain the history of the symptoms to the hematologist and see where they want to go with it.

      – Dan

  77. Mistyb says:

    Forgot to add that I went on diet back in August of 2015 I went on a thrive diet and I’ve lost like almost 30 pounds within 6 months. I worked out not that often so I’m like losing that much and now it’s hard to gain back . I’m just worried like did I lose the weight due to being sick or was it diet?!

  78. Holly says:

    Hi, just been reading through your blog and found it very interesting but also slightly worrying.
    I’m 25 years old and I’ve been experiencing symptoms for a while! I always suffered with growing pains in my legs as I was growing up but they have never gone away. I didn’t think anything of it until the doctor said recently that I can’t still be growing. The pains in my legs happen mostly at night and it’s right in the bone where it hurts/aches.
    Also in the last couple of months I’ve been having night sweats which I’ve never suffered with before.
    About a month ago I didn’t get any sleep one night because I was itching all over, it was awful. This also happened again lastnight and lasted all through the night.
    Everyone thinks I’m a hypochondriac but I’ve just got a feeling that something isn’t right.
    I’m also bruising easily but only on my legs. New bruises keep appearing and I haven’t done anything to cause them.
    I don’t know if I’m just being paranoid or whether I should phone the doctors and get them to look into it all.
    I would really appreciate some advice.
    Thanks

    • Hi Holly,
      The biggest lesson I learned in discovering my disease is that night sweats mean something. What I mean is, I was naive and just thought my house was hot. Dumb! Now, that being said, there is a big difference between sweating at night, and having night sweats. The night sweats I had would leave both my shirt, and the sheet underneath me, wet. Not clammy, but wet. It’s gross. If you’ve been having something like this, then it needs to be discussed with your doctor. Before going to see the doc, write down every symptom which is affecting you, and give that list to the doctor. I’ve found that doctors are often so busy, and so pre-occupied with their own path of questions, that they sometimes need a visual list of all the symptoms if you are ever to have hope of treating all symptoms, and their underlying cause. Beyond that, I have never come across anyone who had bone pain or bruising as symptoms of lymphoma. Bone pain can come later as a side affect of the medication which treats lymphoma, but it is not a symptom I’ve ever heard of.

      Good luck. – Dan

      • Holly says:

        Thank you for taking time to reply. It’s really difficult to know whether they are night sweats or just sweating. Everyone else is cold yet I’m really hot all evening and at night. I’m sticking to the bed sheets and my pyjama top is getting damp.
        It’s more the all over itching that is concerning me!
        It’s probably nothing but I just can’t relax until I know for sure.

  79. Holly says:

    I also forgot to mention about my lymph nodes, I don’t think they are swollen but it’s hard to tell. I don’t really know where to check.
    I’ve got a pain under my right arm, kind of on my ribs.
    If I don’t have swollen nodes then does this mean it can’t be anything serious?

  80. Tessy says:

    Hi all,
    I just came across this blog and think it’s really helpful and informative. However, I just want to add for everyone to keep in mind that there is another type of lymphoma, other than Hodgkin’s Lymphoma – Non-Hodgkin’s Lymphoma. I was just diagnosed with this disease two weeks ago. I have not had my PET scan yet, but CT found only one malignant lymph node in my underarm area and two tiny hot spots in my abdomen, which are indeterminate. I have largely no symptoms and feel more or less the same as I did before – no night sweats, fatigue, pain, or extreme itching, which can be symptoms of both lymphomas. My only symptom really was a very slight puffiness in my left underarm area. I had an ultrasound done of that area one and two years ago, and both times they just found a palpable normal lymph node. It felt rubbery, painless, and was movable – not hard, as I’d always thought cancer to be – so I tried not to think about it. I’ve since learned that rubbery, painless nodes are a hallmark sign of some lymphomas. The lymph node was not enlarged, but it did not go away, which I thought strange. This year I asked the doctors for an MRI, thinking it was breast related. The nurse wanted to do an ultrasound first. The US found the same lymph node, which had grown just a little bit in a year and a half to 1.2cm. They biopsied it and it came back as grade 1 Non-Hodgkin’s Lymphoma. As I understand it, I will be on watch and wait indefinitely until I need treatment, which hopefully won’t be for years. My blood work was normal, except for a slightly low lymphocyte count. In hindsight, my only symptoms over the past couple of years were occasional itchiness on the tops of my thighs and on my ankles, but only in winter, so I thought it was just dry skin, and the slight puffiness under my left arm. I’m only 41 – most cancers of this type are diagnosed in people in their 60s and 70s. Just wanted to give another version of the lymphoma story.

    Take care, all – and be well!

    • Diana says:

      Hi Tessy- recently I found a posterior neck node during a routine exam of an earlier issue I had with vein inflammation (that was self limiting ). I had an US and the size was right at 1cm with the width at .4 had two doctors look at the results and four doctors give blood work with CRP. I know lymphoma doesn’t show up on blood until it starts changing your whiteblood cells… that being said both ENT have assured me that I’m fine- US of uterus , endoscopy of stomach (two years ago),but theyvetold me to wait and see whether the node goes down. They’re cautious about biopsy unless I have symptoms (which i don’t … maybe yet), due to the precarious position of my node on the neck muscle and it being right on a vein. They suggested I wait a month then coke back and get a FNA ifi wanted or continue to wait. They said I could’ve had an infection a while ago and that it might have existed for a while and had it not been for me being cautious due to my earlier vein issue I might not have noticed it.unsure as to what I should do now. I’ve had bad gastritis in the past that has now flared up but don’t want to confuse it with possible missing something more harmful. Not sure if I should wait to see if node goes away.heard from a few doctors that some nodes never go back to the same size.

  81. D. Green says:

    My husband was diagnosed with Lymphoma and it was actually Sarcoidosis. The scans look similar and it does cause swollen lymph nodes and a terrible cough.

  82. Colton Patriquin says:

    Hey Dan, thank you for your blog and all of your replies here. Long story short, I desperately seek advice on dealing with doctors and tests.
    I myself am at a point where I am extremely frustrated with tests and doctors. I have all the classic symptoms of Lymphoma B, with all my nodes enlarged in my neck, armpits and groin, as well. I start massively sweating for short periods out of a single armpit, itchy red patches of skin that come and go and move around, and an intense line of pain in my crotch that will come and go. I am frustrated because the only thing tests have shown is i had low blood platelets at 130k but now back up to 210, and general inflammation, everything else for the bloodwork keeps coming back normal i am told. I literally feel like i am dying but multiple test and doctors over the last year have told me im fine, despite being a slim guy at 175pounds before with no fat, and now weighing 140, at one point dropping to the 130s, losing all my muscle mass and not being able to put the weight back on. The doctors run the same blood tests over and over with the same results. Any advice you have on dealing with doctors and getting results would be appreciated. Thanks for your time, Colton, Edmonton, Canada.

    • Colton my friend, you need a specialist. I don’t think you mentioned your age, but if you are a young adult, I would go to your doctor and specifically tell them you want to be scanned to rule out the possibility of Lymphoma. One cannot rely on a blood test alone to find Lymphoma. An x-ray of the enlarged nodes is the bare minimum, but a CT scan is much preferred. Another option would be a needle biopsy of an enlarged lymph node. Be specific, and tell the doctor you think you have this disease, and that you want a referral to a Hematologist/Oncologist. Any Hematologist/Oncologist who hears your list of symptoms will not let you leave until they have thoroughly tested for Lymphoma. Please go as soon as you can.

  83. S.B. says:

    Thank you for sharing. Some parts of this mimic where I am in a five-month journey of strange events. I feel like I’ve been on a goose chase.

    November 2016 – I first had left side chest pain that hurt through to my back (just above left shoulder blade) and mild swelling along and under my left arm. I also had dilated veins in my left hand and small itchy bumps popping up along my hand, arm, and underarm (seemingly, following the veins). I commented to my husband and bestfriend that my body felt “strange.” I was having intense back itching each night.

    January 2017 – Went to OB/GYN for routine check. Had regular mammogram. Without mentioning left chest pain, I was asked to stay for ultrasound. The ultrasound focused on area of pain and another area on right side. No ultrasound correlate.

    But the radiologist called me later after I left. She said because of my maternal family history of inflammatory breast cancer she’d recommend an MRI, especially given there was asymmetrical density in addition to my symptoms. My gp referred me to a breast surgeon.

    February/March 2017 – The breast surgeon ordered an MRI that found fibroglandular tissue on left side and a small 4 cm area on the right side with “non-mass linear vascular enhancement” above it. Probably benign, but because I was high-risk it warranted watching.

    The surgeon scheduled a six-month follow-up MRI. I told her it felt like something was burning in my veins. She thought I possibly had thoracic outlet and/or subclavian steal syndrome causing the swelling, bulging veins, and pain and referred me to a vascular surgeon.

    Before the vascular appointment, my hand and fingers swelled and turned blue. Veins bulged. There was now numbness in my hand similar to the cold sensation accompanying a hand IV. I was in the middle of my second semester of law school, and I blamed school for this and the extreme fatigue I’d been feeling. Doc ordered bloodwork. It was normal except for high blood urea nitrogen, low CO2, and high anion gap.

    Doc also ordered arm ultrasound, chest X-ray, and chest CT-scan. All were normal. No blood clots. Vascular surgeon said it was thoracic outlet and prescribed stretching exercises.

    Late March 2017 – Itching intensified and spread. The bumps that started along my left hand and arm spread to chest and back.

    April 2017 – After one of my son’s baseball games I had intense itching along feet, ankles, and lower legs. At first I thought it was ant bites, but ant and mosquito bites usually caused larger welts. These were small, blister-like spots. Within days, these spread up my shins and across back thighs. I was in the middle of finals and the itching was unbearable.

    Late April 2017 – When the doctor entered the room he didn’t look at me. He just said, “Oh, you’re not broken out. I think you’re just too tightly wound.” I ignored his rudeness and pulled up my pants legs revealing red lesions. He said, “That’s just flea bites.” Calmly, I said, no, it wasn’t. No one else in our family of five had a single red spot. Then, I took off my sweater revealing the spots on the backs of my arms and showed the larger spots along my chest.

    He said, “That’s folliculitis.” I said, okay, so now that we’ve established I’m broken out, what do I do to stop the intense itching. I asked if this could be something autoimmune since my mother had hypogammabulinemia, a rare immunodeficiency disease, and a natural killer cell deficiency discovered after two ICU admittals for pulmonary embolisms. His demeanor changed.

    He looked back at my bloodwork. “You know, you’re blood was unusually acidic back in March.” Okay? “Did your mother ever have any cancer?” I said no. He ordered new bloodwork and referred me to a dermatologist and immunologist. Also prescribed two high-powered antibiotics and an antibiotic cream.

    Early May 2017 – This bloodwork showed a substantial drop in my white blood cell count since March. It also showed low absolute and percent lymphocyte counts, low platlet volume, and vitamin D deficiency.

    In the past few weeks the rash has spread dramatically. I am getting strange looks when out–I look sickly. I now have hyperpigmented areas around my outer thighs, calves, ankles, and feet; purple and red lesions all over that have spread even to my stomach; larger raised patches with some scaling; patches of slow-healing bruises along legs and arms; and dilated, swollen veins all over (arms, hands, legs, feet, chest, and even one bulging spot on the right side of my forehead). And my skin has a yellowish tinge.

    The nurse at the dermatologist’s office took one look at me and scoffed at the very idea of a doctor saying I had flea bites. She said, “Something is definitely going on here.”

    The dermatologist said he wasn’t sure it was systemic. He said sometimes folliculitis spreads all over and that he was going to prescribe “aggressive treatment.” Wet wrap therapy for two weeks. Steriod cream layer, wet pajama layer, and dry pajama layer for two hours every night.

    I’ve been doing that for over a week now. The lesions look a little better following the cream. But within hours the itching starts up and new spots break out. It isn’t improving.

    Most recently, the fatigue has worsened. I’ve been very active (running between three and five miles a day), but now tire out easily. I’ve had a persistent sore throat (thought I might have strep throat), horseness, body aches, and pain in my ribs beneath my breast on my left side. And I’ve developed a dry cough. No fever. I also have an intermittant sharp pain at back of head, left of center, near hairline.

    Dermatologist has scheduled a biopsy for next week.

    I am typically not a good self-advocate with doctors. I avoided doctors for nearly two years before this. Yet I knew something wasn’t right here. I’ve patiently listened to and followed all doctor’s orders along the way. But I’ve also kept written diary entries on invisible symptoms and photo diary entries of visible signs.

    Thankfully, my physician cousin looked at the pictures of the swelling and discoloration of my hand and said, “You and I both know that’s not normal.” His encouragement to keep pushing reassured me I was acting reasonably and sanely.

    Nearly all diagnoses are treatable once you have the correct diagnoses. Hopeful to be closer whatever mine is. Staying optimistic. Again, I appreciate your sharing your progression of symptoms/signs. Wishing you all health and peace.

  84. Melanie says:

    Thank you for your story.
    Hi I’m Melanie.
    I’ve been sick over a yr now. My story starts with being fine and active. About 50 lbs over weight but over all fine. I got a dirty needle stick in April 2016. 3 weeks into the antiviral meds I was sick with flu like symptoms very fatigued. With in 3 more weeks 102 temp and upper respiratory infection with fatigue. The fatigue never left.
    I kept telling the Dr’s something is wrong and I’m not getting better. They kept brushing me off.
    Then terrible bone pains stiffness all over so blood work and 9 weeks of physical therapy.
    Nothing makes me feel better.
    Well maybe if I get an antibiotic but once it’s done back comes the pain and extreme fatigue.
    Lupus was ruled out. After seeing an Rheumatoid dr I was told I have Rheumatoid and Osteoarthritis. But she won’t treat me til we find out about all these swollen lymph nodes. She tells me I need a biopsy of the lymph nodes.
    I can’t find anyone to do this for me. Meanwhile I’m still feeling awful.
    I’m thinking all along it’s the dirty needle stick. Or the meds making me feel so sick.
    Once after working 2/12’s i slept 4 hrs and when I woke up my legs wouldn’t move. Stayed 2 nights in the hospital. Lots of test but no answers.
    Chronic fatigue is the only answers.
    Went to an infectious disease dr. More test. I haven’t got anything contagious but he doesn’t know what’s wrong with me.
    Now seeing an immunologist and some test are back. My IgG level is 1776. Very high.
    I’ve been sick 4 times in over a yr with upper respiratory infections.
    My new GP dr says she’s pretty certain that I have non Hodgkin’s and she is waiting for the immunologist information before sending me to a hematologist.
    I’m scared I’ve already been sick over a yr now
    I have been having the night sweats and my liver feels so big and tender. But when I sweat my groin area stays wet longer and itches so bad that it bleeds at times from me scratching at night not knowing what I’m doing.
    Please answer me back I’m scared. I’m a grandmother 54 yrs old and desperate for answers.
    Thanks in advance
    Melanie

    • Hi Melanie. Sorry to hear you are having so much difficulty. If your GP suspects lymphoma, and you have swollen lymph nodes, then they should refer you to the hospital and pathologist who can perform the biopsy. You should not have to find someone to do the biopsy. If everyone is suspecting lymphoma, then keep going down that road and testing to eliminate other possibilities. Go to good doctors. Seek out the big cancer center near wherever you live and trust them to do good work.

      – Dan

  85. Dana E says:

    Hi Dan, your blog here is so informative that I’ve read through each and every post. I am happy your doing well.
    Well my story is this – about a year ago the full body itching starting. It’s gotten increasingly worse over this past year. My mother insists for me to change my detergents and shower soaps, another words saying I’ve become allergic to these things all of a sudden. I don’t buy it. I know my body and it does not feel right. I’m 48 by the way. A few months ago the top of my hair in the front started to fall out. I have some baldness going on now. I hate it! I’ve also learned through CT that I have swollen lymph nodes on both sides of my groin area. And, my thighs hurt like heck!!!! The pain starts from the groin area and works its way down into my thigh. Some mornings getting out of bed is a real task, I can barely walk! The left side is worse than the right. Just to give you some more info, I had cervical neck surgery this past February. They did a bone graft out of my right hip. I wound up with a staph infection and a bone infection in that right hip. I ended up needing antibiotic IV infusions for 6-8 weeks. Well during the infusions towards the end that is when my legs started to bother me. I don’t know if that was just a coincidence or what but ever since I’ve had leg issues. So you’re talking 5 months now. And it’s increasingly getting WORSE AND WORSE!!!! I cry some days the pain is so bad! I saw a neurosurgeon and I’m now doing PT. Quite honestly though, it’s not at all helping. I feel good when I leave but as soon as I get in the truck and travel to my destination and get out of the truck the pain is back in full force! I also suffer from lower back pain. Had spinal fusion 9 years ago. They think this leg pain could be coming from my back or my hips…I’m just so confused. But getting back to the severe itching and the hair loss and the swollen lymph nodes and the severe leg pain, no one is giving me answers. My GP thinks it could be sciatica but I never heard of sciatica being in the front of your legs! The backside yes, but not the front. I don’t know what to do or where to go. Like others have mentioned, do I see my GP and approach him with all these symptoms and insist on having a CT? I recently had very basic blood work and all was ok. Can you please lead me in the right direction on what to do? I’m scared. Thank you Dan.

    • Hi Dana,
      Wow, that’s a lot of stuff going on. I’m sorry to hear about the pain. I tweaked my back lifting something in the garage last weekend and couldn’t stand up straight for 2.5 days. Back pain is no joke. To address your question…I am assuming you have contacted me to ask if I think you might have Lymphoma. In short, no I don’t think you have Lymphoma. The main reason I say that is because you are the wrong age. Lymphoma generally strikes people when they are younger than 32, or when they are older than 55. Statistically, you are in the “Lymphoma half time.” If your GP has been diligent in the past about finding the source of problems, then I say definitely go see that doctor again. Let them know ahead of time that you are coming in to talk about many problems and you want to spend some time really getting to the bottom of the issues. Do this, so they schedule you for more than 7.5 minutes. Write down a list of every problem, and be prepared to hand that written list over to the doctor. Good luck, you’ve got a lot of work to do.

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