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What were your lymphoma symptoms?

tgyphilly's picture
tgyphilly
Posts: 18
Joined: Jan 2020

I have nodular lymphocyte predominant HL, in a "stable" state... meaning it's not gone, but also not progressing all too quickly.  For the past year, I have had symptoms that include random itching, especially in extremities and in and around my eyes (weird), fatigue, and just a general feeling of being unwell, which is really hard to describe other than that.  

What were yours, if you had any?   My doctor is unconvinced that my symptoms are related to my recurrent/persistent lymphoma, and is not eager to pursue a second line treatment plan even though my PET/CTs are showing increaded FDG activity, albeit all nodes showing heightened activity are coming in with a SUV of less than 10. 

If I had a reference point for symptoms other than the classic B symptoms (weight loss, fatigue, fever, drenching sweats), it would be helpful for me to at least know that I'm not going crazy, and maybe I can share with my physician so he knows that there lymphoma symptoms don't necessarily fit neatly into a box.   Please share if you can.   Thanks.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

tg,

I had NLPHL also.  It is an indolent Hodgkins strain, pretty rare, constituting less than 1% of all new lymphoma diagnoses annually.   It is quite similiar to the NHL follicular disease.   I was initially diagnosed with extremely widespread disease, Stage III.   Tumors in heart area, both axillary (armpits), spleen, pelvic area, and all around lower neck and both lungs, as well as compressing the superior vena cava and esophagus.   At diagnosis, I had never felt an enlarged node in my life (to the touch).

I ended treatment 10 years ago, and still have serious, almost constant itching, which is symptomatic of the disease, and I continue with profound weakness.  But I have no active disease that can be identified.  Also, HL commonly will cause burning in the nodes with alcohol consumption.   Fairly rare, but a known HL symptom.  I never drink liquior, but even one beer will often cause this for me -- just something to be aware of also.

I suspect the itching will not leave.  It may or may not reflect active disease.  I am told there is nothing to do for it.   Benadryl does not help.  I show NO skin irritation, no rases.

 

I wish I could be more optimistic in this reply,

max

tgyphilly's picture
tgyphilly
Posts: 18
Joined: Jan 2020

Thanks Max.  Have you ever learned what the biological pathway is for the itching?  I.e. why does the body respond to the HL with an itching response?   Thanks again

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Itching generally is believed to be caused by histamines in the blood, which makes it odd that Benadryl does not help me today.

The other very common cause of all-over, chronic itching is liver disease, so review your enzyme results.

po18guy
Posts: 1083
Joined: Nov 2011

NLPHL is in a more gray area than in the past. The thinking now tends toward it being more of an actual B-Cell Lymphoma than Hodgkin's. I would most certainly get a second opinion, preferably from a hematologist at a National Cancer Institute designated comprehensoive cancer center (real mouthful there!). Those centers employ the best and brightest, possess the latest in research data and conduct clinical trials that are helping to change the lymphoma treatment landscape. Find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers

That is "if" you are not already at such a center. Going to one has saved my life several times over.

tgyphilly's picture
tgyphilly
Posts: 18
Joined: Jan 2020

Thank you Po Guy.  I'm at the Hospital of the University of Pennsylvania, which is one of the best in the world for blood malignancies, but am leaning toward getting another look anyway.  May head to Sloan Kettering in NY.  

po18guy
Posts: 1083
Joined: Nov 2011

Nevertheless, lymphomas are a strange cancer. They originate in cells that developed in the marrow - from pluripotent cells. That may have something to do with the incredible variation we see in lymphoma. It seems that, to a greater or lesser degree, each lymphoma is individual, unique. Since no individual or organization possesses all research and all possible treatment strategies, another set of eyes on your case would certainly be prudent.

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