Just found out my Hodgkin’s lymphoma is “unfavorable”

dragonfire42
dragonfire42 Member Posts: 6
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I had a consult with a radiologist on Friday, and at some point, it was mentioned that my SED rate was high enough to put me in the "unfavorable" category (103, I think it was), which surprised me. Up until that point, I'd thought that this was really no big deal, that as far as cancer goes, my kind is one of the least scary ones and I'd have to get chemo, but after that I'd be just fine. When I tell people that I have cancer, I also tell them right up front that I'd probably stand a better chance of dying if I was otherwise healthy and caught the flu than I have of dying from this. But what I'm really afraid of isn't dying, it's having to keep living with a significant health problem. I've spent most of my life being pretty healthy, so this is a big change for me, and I don't like it. I've been looking into moving out of my parents' house and into my own apartment, but if my cancer is likely to come back, that's probably not the best idea either for physical or monetary reasons (I have autism and am on SSI, and my parents are perfectly happy to help me as much as I need for as long as I need, but I really want some independence). Basically I think I'm really having trouble adjusting to being sick, and accepting the fact that it is likely to be a long-term thing.

Comments

  • dragonfire42
    dragonfire42 Member Posts: 6
    edited October 2020 #2
    twowheels said:

    Similar Sed pre-trtmnt

    I'd get a reclarification on consult from radiologist (even better if possible, from ONC). 
    What subtype?


    My PET lit-up like a Christmas Tree with hot nodes everywhere from head to (literally) toe.
    Pre-trtmnt my SED tested >100. 

    My trtmnt (ABVD x 6 cycles) was spot-on for my classic NSHL. Hot nodes quickly melted away and my SED tested <12 after very first trtmnt.

    I felt a bazillion times better after that first trtmnt and SED has remained below 5 ever since.
    Post back with clarification and update your progress.
    All the best

    Info

    Nodular sclerosing classic Hodgkin's lymphoma, stage II (in my neck/shoulder and mediastinum). I'm on round 3 of ABVD, and I feel so much better already. I will be asking for clarification and specifics the next time I see my oncologist, but that's not until next Thursday.

  • twowheels
    twowheels Member Posts: 31 Member
    edited October 2020 #3
    Similar Sed pre-trtmnt

    I'd get a reclarification on consult from radiologist (even better if possible, from ONC). 
    What subtype?


    My PET lit-up like a Christmas Tree with hot nodes everywhere from head to (literally) toe.
    Pre-trtmnt my SED tested >100. 

    My trtmnt (ABVD x 6 cycles) was spot-on for my classic NSHL. Hot nodes quickly melted away and my SED tested <12 after very first trtmnt.

    I felt a bazillion times better after that first trtmnt and SED has remained below 5 ever since.
    Post back with clarification and update your progress.
    All the best

  • dragonfire42
    dragonfire42 Member Posts: 6
    edited October 2020 #4
    twowheels said:

    Same NSHL treated w/ABVD. PET after 2nd cycle

    I went thru 6cycles (12 trtmnts) of ABVD; you likely are schedule for 4cycles (8 trtmnts) of the same ABVD.

    Fortunately for me, chemo effectiveness was immediate and after my interim PET (after 2nd cycle), they discontinued Bleomycin (the "B" in ABVD).

    Assuming you are on the same chemo regimen, ask (request if not) if they plan to give you an interim PET (mostly to confirm chemo efficacy/progress in dissolving lumps and hot spot activity). 

    Awesome to hear you are feeling "so much better". 

     

    I'm getting PET scans after

    I'm getting PET scans after every two cycles, I think. Last one showed level 3 activity in my neck/shoulder and level 2 in my mediastinum, size and activity of almost everything was down from the first scan. I'm getting another scan after the next 2 cycles to determine further treatment (more chemo and/or added radiation). 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited October 2020 #5
    dragonfire42 said:

    I'm getting PET scans after

    I'm getting PET scans after every two cycles, I think. Last one showed level 3 activity in my neck/shoulder and level 2 in my mediastinum, size and activity of almost everything was down from the first scan. I'm getting another scan after the next 2 cycles to determine further treatment (more chemo and/or added radiation). 

    Strain

    NSHL is the most common HL, and the most easily defeated.   A minor case of early-stage (Stage 1 or 2) is among the least-threatening cancer diagnoses a person can receive.

    Many factors contribute toward whether a given clinical presentation (with ANY type of cancer) is "Favorable" or nonfavorable.   Sed is but one of a half-dozen or so for lymphomas.  Your case seems like no cause for histrionics.    Be thankful that you have a stable residence and some form(s) of insurance and familiar support.   Many millions of dying individuals in this nation have neither.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited October 2020 #6
    twowheels said:

    Same NSHL treated w/ABVD. PET after 2nd cycle

    I went thru 6cycles (12 trtmnts) of ABVD; you likely are schedule for 4cycles (8 trtmnts) of the same ABVD.

    Fortunately for me, chemo effectiveness was immediate and after my interim PET (after 2nd cycle), they discontinued Bleomycin (the "B" in ABVD).

    Assuming you are on the same chemo regimen, ask (request if not) if they plan to give you an interim PET (mostly to confirm chemo efficacy/progress in dissolving lumps and hot spot activity). 

    Awesome to hear you are feeling "so much better". 

     

    "B"

    two,

    It was wise of your onc to delete Bleomycin.   It caused me tremendous lung toxicity.   It is an excellent cytotoxic agent, and kills cancers cells like nothing else, if the patient can endure the side-effects.

  • twowheels
    twowheels Member Posts: 31 Member
    edited October 2020 #7
    Same NSHL treated w/ABVD. PET after 2nd cycle

    I went thru 6cycles (12 trtmnts) of ABVD; you likely are schedule for 4cycles (8 trtmnts) of the same ABVD.

    Fortunately for me, chemo effectiveness was immediate and after my interim PET (after 2nd cycle), they discontinued Bleomycin (the "B" in ABVD).

    Assuming you are on the same chemo regimen, ask (request if not) if they plan to give you an interim PET (mostly to confirm chemo efficacy/progress in dissolving lumps and hot spot activity). 

    Awesome to hear you are feeling "so much better". 

     

  • twowheels
    twowheels Member Posts: 31 Member
    edited October 2020 #8
    Max Former Hodgkins Stage 3 said:

    "B"

    two,

    It was wise of your onc to delete Bleomycin.   It caused me tremendous lung toxicity.   It is an excellent cytotoxic agent, and kills cancers cells like nothing else, if the patient can endure the side-effects.

    ANC - Individual injections for neutropenia if recvg Bleo

    For other readers, search for comments on neutropenia and advantages choosing individual injections if possible (IE: Neupogen) vs long lasting single dose Neulasta when receiving Bleomycin

     

  • RachelF
    RachelF Member Posts: 7
    #9
    non-medical challenges

    If it's not too late I wanted to add a note of encouragement about the non-physical challenges of a cancer diagnosis. In 1988 when I was 21 I was diagnosed with Nodular sclerosing HL, stage II, neck and chest (softball sized tumor!), and received LOADS of radiation therapy. Once the doctor told me my survival rate would be high my next biggest set back was: living with my parents for 4 months and losing independence. You have to carve out opportunities where you can, take small victories and look to the future and better days. For 30 years I've had some restriction in my breathing ability, can't eat spicy food, sunburn easily on torso, lost some hair at the base of my skull, but overall I've lived a really healthy and physically active life. This isn't a life-long sentence. I hope you are doing well.

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited January 2021 #10
    Unfavorable

    Sorry to hear of your concerns, but I certainly understand. In 2008, I was diagnosed with a T-Cell Lymphoma. The prognosis was "poor." If one relapses (assuming they can even get into remission) within 6 months of primary therapy, they are bumped down into the "extremely poor" prognosis sub-group. If they relapse after that, there is no prognosis. If they develop a second simultaneous T-Cell Lymphoma, it becomes difficult to describe. If they develop a third simultaneous cancer in their marrow from years of treatment, it is a miracle if they survive. Virtually zero chnce. Who would face that? Who could face that, or by any stretch of the imagination expect to survive it?

    I did. I am in my 5th remission. Someone survives every cancer. Be that person. 

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