Resource for latest NLPHL studies

tgyphilly
tgyphilly Member Posts: 49 Member

I stumbled across a Twitter feed called GLOW (Global nLPHL One Working Group), which is a community of hem/onc docs who treat and conduct research around Nodular Lymphocyte Predominant Hodgkin's Lymphoma (or whatever you want to call the disease now).

Here is the link: https://twitter.com/glow_nlphl. It seems to be a good aggregator of latest research and treatment protocols... at least I think it's better than combing through random Google search results.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited September 2023 #2

    Long and Winding Road....

    An update on my NLPHL experience.

    Been doing this awhile now..... First diagnosed with Stage IIIB NLPHL in 2009. Bulky disease, extremely pervasive and widespread. Both axillaries chocked full of tumors; esophagus compressed; heart compressed and causing symptoms of angina; superior vena cava compressed; splenic involvement; pelvic involvement. My original hematologist explained that my disease was 'very indolent, or slow-moving.' So I asked, 'then how is it everywhere?', and he said, 'you've had this at least a year, and possibly much longer.' Ergo, I believe I've had the disease since 2007, or thereabout; possibly even longer than that (today, in 2023, that is ~~15 years). In summary, the common statement that this disease is 'usually discovered early, after a node is detected to touch' was NOT my experience. To this day, I have never had a palpable node anywhere. Almost always, I have had huge nodes that even oncologists and surgeons could not find via touch. Most recently, I had a node biopsied from the surface of the (r) axillary, which no doctor could feel with their fingers; it was 6.5 CM -- the size of a tennis ball.

    I went into complete remission after first line therapy, which ended in mid-2010. Smooth sailing for three years, until I became very anemic, (iron level at near-zero) requiring IV iron. The IVs returned the iron levels to normal in under a month, and they remained normal with no supplements thereafter. The hem said he had no idea what caused this episode, although he did extensive testing (GI trac, etc.), all negative. The cause remains unknown.

    Except for a bout of Stage II prostate cancer in 2014, I was cancer-free until 2021, when more large, axillary clusters were discovered. These were diagnosed after lengthy pathology as an autoimmune condition known as PTGC. It is worth learning about this odd condition that looks virtually identical to NLPHL if you have NLPHL, since they are strongly related, and at times occur together. But, my 'presentation' of PTGC was never per the usually patterns for PTGC, so I am not convinced that I didn't have NLPHL again when PTGC was first discovered. (PTGC is described by the NIH as 'usually a single node, or small grouping of nodes, and usually disappears spontaneously over time.' Mine appeared as large tumors almost everywhere, and got steadily WORSE.)

    By 2022 I was updated in diagnosis to relapsed NLPHL, and again at Stage III, but "A" this time. My new hem/onc recommended either Rituxan (R) or Rituxan and Bendamustine (B &R). After a thorough discussion with her regarding both, we decided on R alone. I had my second PET since beginning R about 14 months ago, and it shows no abnormal SUVs anywhere -- Complete Remission.

    My takeaways are that (1) this disease is almost always easily controlled in relapse, unless it morphs into Diffuse Large B NHL or an acute leukemia; in such cases it can be very deadly, and ordinarily requires SCT; (2) It is a punk disease, which slithers off and hides from a fight with chemo, but is never really gone forever. (3) I had one 'interventional radiology' biopsy in the course of all of this. It was worthless, due to not providing sufficient sampling for the extensive testing that NLP requires for accurate diagnosis.

    I give thanks for wellness,

    max

    https://www.youtube.com/watch?v=fHqBL0WIRRY

  • ShadyGuy
    ShadyGuy Member Posts: 890 Member

    Max

    Your cancer journey has been inspiring to me for years. Thank you!

  • tgyphilly
    tgyphilly Member Posts: 49 Member

    Thanks for the update Max. It's always helpful for me to hear from others who have had to handle NLPHL relapses, or just the experience of the disease never really going away. There are a lot of first person accounts of initial diagnosis and treatment but less information available from actual patients on handling multiple recurrences, both in terms of treatment and mental approach.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited September 2023 #5

    Tg,

    I like your comment '...mental approach' for two reasons. First, it shows that how we deal with disease is a CHOICE; there is no one size fits all. And second, it suggests how emotions and attitude are among the most important side-effects of cancer, alongside fatigue, neuropathy, or any of the others.

    Since you expressed interest in the subject, I will add that I basically no longer worry about lymphoma, or what any given scan will show. Sure, I still care and desire wellness, but I know that virtually any diagnosis is usually highly treatable, and no reason to call the funeral director. I am no super-brave individual; I feel I have evolved into this viewpoint. It seems to me that most people react to cancer the same way that they react to any other seriously bad news: the hysterical will be hysterical, while the brave will be brave. Character persists, regardless of what life throws one's way. Most individuals are somewhere in the middle.

    Be brave,

    max

  • ShadyGuy
    ShadyGuy Member Posts: 890 Member

    🤨👍

    Concern about lymphoma is justified and understandable but Fear is a choice! Fear interferes with the rational decision process. I accept my mortality while trying to delay it. The estimate is that since we evolved about 80 billion people have lived. So far every single one of them has died. I know I will be no different. We have only today - yesterday is gone and tomorrow is not promised to anyone. Live in the day! No offense meant to the religious people. I hope they do live forever. Still do not squander the day.