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Itching and Hodgkin's Disease (long)

Kaos
Posts: 4
Joined: May 2003

Back in 2001 I began itching without reason. I eventually went to my general doctor who referred me to an allergy doctor.
After allergy test and multiple visits without solving my itching problem I asked the allergy doctor about a gland in my neck that I felt getting bigger than normal. He told me there were no glands in that area.
I went to another allergy doctor in 2002 that sat down with me and went over my entire health history along with my family's health history.
My mother was diagnosed in 1957 and 1969 with Hodgkin's Disease. When she died, due to an unrelated illness, the Hodgkin's Disease was in remission.
The second allergy doctor noted that the gland in my neck was of concern and should be watched for further enlargement. He put me on allergy medicine to help with the itching.
Early 2003 I was still itching and noticed that my arm pit (same side as swollen gland) was starting to swell.
I started checking the symptoms on the internet and the first thing that pops up is Hodgkin's Disease. I was shocked and a little aggravated that the doctors never mentioned that itching and Hodgkin's Disease were related, especially since my itching was not treatable even with allergy medication.
I went back to my general doctor who noted that the glands were of much concern and that the swelling under my arm pit was inflammation and or fluid build up from the glands in my neck. The good news is the glands in my arm pits were not swollen.
My general doctor took blood work again which came back fine except for a "small elevation in the WBC" which was a little over 11000. He recommended me to a surgeon for a biopsy.
Well, Thursday (5/22) I had the biopsy done. It was much more surgery than I expected with over a 3 inch incision. A pathologist was present during the biopsy. The surgeon told my wife while I was still in the recovery room "the pathologist highly suspects it is Hodgkin's Disease and it is very treatable".
I am hoping that it is very treatable. I have to go back this week to see where I go from here. I am guessing there will be more test to see exactly what stage it is in also.
I am still puzzled to the fact that the allergy doctors never mentioned that unexplained itching is a Hodgkin's Disease symptom.
Anyways, I know this was long but wanted to tell my story. Is there any specific questions I should ask when I go back this week?
Thanks for reading.
Wally

dpomroy's picture
dpomroy
Posts: 136
Joined: Dec 2000

Hi,
I also had horrible itching particularly on the palms of my hands and the soles of my feet. Itching has so many possible causes that I suppose doctors like to rule out the more likely things first. Like you this itching was one of several weird symptoms that appeared before I was actually diagnosed. Another one was that whenever I had anything alcoholic to drink my neck and shoulders ached. I felt cuckoo going to the doctors with all of my strange complaints. I am surprised though that with your family's history that the doctor didn't think to check. My only advice Wally is to start keeping a notebook. Keep track of symptoms that show up, reactions to treatments, addresses and phone numbers of doctors, doctors appointments and questions that you will want answered. It's good to have all of your information in one place. I also suggest that when you go back to any doctor bring someone with you to be a second set of ears. I was surprised at how much more information I walked out with when I had that person with me. I don't know about you but I'm sometimes in a haze when I'm hearing some of that stuff. And YES, these days, they told me the cure rate for Hodgkins is well over 90 something percent. My oncologist was using the word cure not remission. Best of luck to you.

Kaos
Posts: 4
Joined: May 2003

dramerth,
I had forgot to mention in my post about alcoholic drinks. I don't drink much at all but my wife and I decided to celebrate our anniversary with some wine. WOW, I thought I was going nuts. My itching problem came on all the sudden 10X worse.

Zim
Posts: 3
Joined: Apr 2017

I have not been diagnosed yet.  I am still waiting for my biopsy to be scheduled but it is strongly suspected I have non hodgkins lymphoma.  I am also itching on the soles of my feet and my hands. I have a large cluster of masses in my chest completely surrounded by vital organs and major blood vessels.  They found it when doing a CT scan to do a heart surgery. The largest of the masses in the cluster is about 3x2 inches. I also have a mass growing in my right neck/shoulder and a tender area in my right arm pit. It is so frustrating to wait and not get on with treatment.  I am do a green juice fast while I wait.  I had heard making your body alkaline by drinking the juice from green vegetables helps stop the progression and may even shrink it so figured at least I can do something while I wait and it surely can't hurt.  I am 4 days in and feeling better than I have in a long time.

runr
Posts: 15
Joined: Apr 2003

Last summer I began to itch terribly on my legs and feet. I just thought it was because of living in a dry climate and going swimming with my kids so much. It would drive me crazy though and I would pour on the lotion. I was diagnosed with HD stage IIIb in Aug. 2002. I had a very large mass in my chest area. I finished chemo in March and radiation 2 weeks ago. I feel better than I have in 2 years! (All those strnage symptoms were something after all.)
I would suggest if you exercise now to continue to do so if you can. I tried to keep exercising through the whole treatment and found it really did make me feel better. I just did what I could and did not overdue it.
Best of luck to you. I've heard so many stories of people being cured of HD.
Mary

Kaos
Posts: 4
Joined: May 2003

runr,
I hear the treatments can sometimes be hard, I am hoping for the best. Sure will be nice not to itch so much. Glad to hear your came out so well.
What test did they use to stage your HD? Thats my next step.

runr
Posts: 15
Joined: Apr 2003

I don't know the name of the test they did for my staging. They did a biopsy of the mass in my chest. I also had a bone marrow biopsy to stage the HD. They said if it was in my bone marrow it would be stage 4. Mine wasn't. I went through the treatments ok. I took Nuelasta shots the day after treatments and was told I was a success story for the drug. Once I started the shots I never had problems with low WBC again. Best of luck to you! And remeber even if you are diagnosed with stage 4 I'm told the cure rate is still very high.
Mary

Zim
Posts: 3
Joined: Apr 2017

MAry where was your mass and how big was it?  I have a cluster in my chest with one being 3x2 inches.  I also have one in my neck/shoulder.  I have been waiting 2 weeks for a biopsy and it is really frustrating. They said they strongly suspect non hodgkins lymphoma but the cluster of masses are completely surrounded by vital organs and blood vessels.  They were going to go through the trachea and lung to getthe biopsy and began setting it up when I discovered the neck one so are now trying to get that one set first. Have you done anything natural to help like green juicing, wheat grass juice.  I have started both. What I've read about it has made sense to me and it makes me feel better to do something.  I am physically in bad shape right now having recently had a hysterectomy and a heart issue.  I am trying to get exercise to strengthen myself but feel like I'm in a juggling act. Any tips going into this?

mooly13's picture
mooly13
Posts: 2
Joined: Jul 2001

I was diagnosed stage IV-B HD in May 2000. I had the itchy skin, too, along with pox-looking type sores on various parts of my body. The itching will subside after your first 3 or 4 chemo treatments, if not sooner.

If I can help in any way, let me know.

Jessica

Kaos
Posts: 4
Joined: May 2003

Thanks for the replies.
I had a CAT scan and a bone marrow biopsy done. Nothing found in the bone marrow and the CAT scan showed I had affected glands in the left arm pit, chest and groin. Doctor calls me a stage III a/b. He did give me a good prognosis.
I started my first of 12 chemo treatments on 6/12/03; it took about 3 hours given in arm. I am going to get a medic port in the chest this week, not really looking forward to that either but I am convinced to get it.
I sure felt bad the third day after chemo, didn't get out of bed for about 16 hours for more than a minute or two. Hopefully the 2nd round won't be as tough. I feel great today.
Again, thanks for the replies.

Wally

dpomroy's picture
dpomroy
Posts: 136
Joined: Dec 2000

Hey Wally,

That's super news that the bone marrow is clear (wasn't that biopsy FUN!). I'm glad you've been staged and are started on your way to recovery. You'll be glad to get the port in the long run. I am totally needle phobic and it was a blessing to have. They can even put some cream on the port area to numb it a bit prior to starting the chemo if you want them to.

The first chemo is a tough one. I don't think I realized how much emotion played into that. I was exhausted! Like you I didn't feel crummy until a couple of days after the chemo. That part didn't really change, I just started to plan better around that...getting enough rest and drinking, drinking, drinking whatever I could keep down to flush that poison out of my body as quickly as possible.

Good luck in your treatments.

maemaebears
Posts: 8
Joined: Jun 2003

hi wally..i know what you are saying the emergency room kept misdiagnosing mine.. finally by the time they caught it it was heading into stage three ..and my doctor sent me to a surgeon to have the "goiter" checked out and the surgeon suspected hodgkin's but didn't believe i had it until he scheduled the biopsy and the day before i went into respiratory emergency and had to be admitted in... so i know wht you mean i too was on allergy pills,the hospital diagnosed me as having a goiter,contact dermatitis,etc before the trip to the surgeons office..Hodgkins is very treatable as i was told as well... you will want to find out what the treatment course is and for how long and possible complications and side effects.. i wish you the best of luck and God Bless
mae-mae bears

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 48
Joined: Jul 2014

Hi Wally,

I was diagnozed at the beginning of 2014, had my biopsy done a day before Christmas and then when the results came in, I was in total shock and I'll explain why. I was pregnant and allot of the signs you I read later about Hodgkings Lymphoma you could find them on pregnancy sites. Right at the beginning of my pregnancy I started getting extremly tired and had my whole body itching. Funny but I even bought one of those big brushes to help with the inching since it was so bad that I was affraid I whould scratch myself until there is blood, then when my lyph nodes got bigger in the clavicle area, for some reasons the inching stopped. Then something weird happened later on which I never had before. I got ithicng and red patches on my elbows but this time it was psoriasis. It happened 3 times during pregnancy but after giving birth at the end of May it never came back and now something else again. After my 7th chemo treatment I found a little patch right where the port-a-cat is and it became red and itchy. So yesterday, the day of my 8th chemo I asked the nurse if  it this was normal and she called a dermatologist to come and look at it and was told I have eczema! Yet another skin desease I never ever had before. They gave me a topical cream to try so we'll know if it goes away then this is the case, if not then unfortunatelly it could be a reaction to either the port or the tape they use when they secure the line on me, or worse, I have an infection! But I'm pretty positive it's eczema.

This is my story of itching. ;)

Natasha

TAEAB
Posts: 1
Joined: Mar 2017

Hi, Ive read all these posts with interest . I came on here because my aunt has been diagnosed with Hodgkins disease . However I suffer with itchy burns and so now am wondering about myself. About 2 years ago I started to get hot red patches that kind of burned and itched . Random times random places on body. To begin with these were mostly on my arms. I have also to be fair had a range of random symptoms over the years - elevated somthing or another in my blood for some time, achy legs , a couple of nodules near my thyroid whihc they did do a needle aspiration for a few years ago and werent cancerous, psorisis etc etc. Like someone else on here I also often get a pain in my arms and neck from alchohol(again inconsistent as to when and what might trigger that ). Not long after this started to happen my dad was diagnosed with pancreatic cancer and died very swiftly . Traumatic time and the itching did go crazy massive hives etc. I understood the elevated stress caused elevated cortisol which is what controls these reactions in body. A couple of months after that I saw an allergy specialist who did skin prick test - I reacted to even the saline control and he said that showed my skin was too sensitised. I will agree that even cotton sheets at that point made my skin go nuts. I was diagnised with salliycylate allergy. Ive done the elimination process a few timnes and reduced obvious sources but honestly it didnt make much difference . It comes and goes . At the moment I'm going through a relatively quiet period but I will still get a few flare ups every week. Mostly its bright red burning patches can be anywhere - legs, arms , back, bum, neck  , I dont get hives so much but the skin goes bright red and itches and burns. I only take the fenofexadine allergy meds when I get a flare up as I refuse to take meds on a dialy basis think thats a sure fire why to poison myself over time. My dad was a pill popper(oh he also has mild leukemia for years ) and I dont believe that all medicine can be good for you. I do and have worried for a while now that there's more to this than an allergy and of course I am worried that maybe its hodgkinson . Both sides of my family everyone had died from cancer one way or another and a huge range of them too. Heres my problems - I've no lump (although haven't checked my thyroid again for a couple of years ), I'm a Brit and trust me when I say you cannot get the doctors to take you seriously in Uk anymore . Also when you suggest worries like this to anyone they treat you like a paranoid freak. I just want to check that I havent got something nasty. I currently live overseas I do ahve private medical insurance but medical isnt that great here , its ok but does cost a fortune and something like this Id have to cover myself . What blood tests would I need to check I haven't got cancer related itching . I can also probably persuade my UK doctor its time to recheck the thyroid nodules . Can anyone advise what should I ask for and have done to check myself out as best as possible. Basically without any other visible signs I'm sure I wont be taken seriously but Im in the prevention is better than cure camp . I feel I have a right to be certain this itching isn't something more . SOS please ! Thank-you

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2518
Joined: May 2012

TAEAB,

Your symptoms do not sound Hodgkins-linked to me.  While Lymphoma can cause some itching, the sores, hives, and "patches" are not like anything I've ever heard a patient describe here with HL causality. My first guess would be liver disease of some sort.  You mention "prevention vs. cure" relative to lymphoma. Be aware that NOTHNG known to current medical science "prevents" lymphoma.

Feel fee to begin a new thread -- they are free ! You deserve it, and this present thread has been dormant over a decade, except for one post.

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