15 years out and here again

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  • PBL
    PBL Member Posts: 366 Member
    #22
    WoodlandGnome said:

    Diving back in

    RS cells found. More path needed plus a comparison to my previous genetics. But looks like I’m in the very late replase club.   Oncologist is consulting with Hopkins to develop a plan. We are holding for a week due to my work schedule. 

    despote being pissy as hell that it’s happening, it’s a huge relief to not to be in limbo. 

    I just dyed my hair purple. I’ve always wanted to do it, but it never felt professional (I’m in a very conservative office). I had a case of the eff-it’s, it’ll be gone in a month. 

    Sorry it looks like you may

    Sorry it looks like you may belong it that club indeed... If it does prove to be the same strain, then it seems that it is just as treatable the second time around, with complete response rates above 80%, which is still something to be thankful for.

    Congratulations on the bold hair statement. I remember the nurse in the O.R. when I got my port put in telling me how on her diagnosis she had tried all sorts of daring haircuts and dyes, with that same idea that it would be gone in a few weeks.

    Best of luck to you, and keep that head high.

    PBL

  • WoodlandGnome
    WoodlandGnome Member Posts: 21
    #23
    Final pathology

    The findings are consistent with recurrent classical Hodgkin’s lymphoma. 

    It CD30 positive, which means I can get the new B, good, because I don’t need more bleomycin. He is contemplating what else, because I can’t do more adromycin. So AAVD is out.

    Do they still do radiation? Cause I never did that before, so maybe it’s in the cards now. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #24
    WoodlandGnome said:

    Final pathology

    The findings are consistent with recurrent classical Hodgkin’s lymphoma. 

    It CD30 positive, which means I can get the new B, good, because I don’t need more bleomycin. He is contemplating what else, because I can’t do more adromycin. So AAVD is out.

    Do they still do radiation? Cause I never did that before, so maybe it’s in the cards now. 

    Commonalities

    The most common salvage for relapsed cHL is ICE, followed by SCT.   ICE contains neither Bleo or Rubex, but is rather draconian/harsh, especially with the transplant as a follow-on.

    Radiation Therapy (RT) against blood cancers is very rare today.  Situations in which it is sometimes used are against single nodes or very limited distribution, or in debulking -- when the volume of turmors is massive.

    Another option now mentioned occasionally is "B & R."   Much, much milder than ICE with or without SCT. Used both as a palliative and possibly as curative, but the objective seems most frequently to be palliative, with good success.  (Bendamustine and Rituxan)

  • WoodlandGnome
    WoodlandGnome Member Posts: 21
    #25
    Max Former Hodgkins Stage 3 said:

    Commonalities

    The most common salvage for relapsed cHL is ICE, followed by SCT.   ICE contains neither Bleo or Rubex, but is rather draconian/harsh, especially with the transplant as a follow-on.

    Radiation Therapy (RT) against blood cancers is very rare today.  Situations in which it is sometimes used are against single nodes or very limited distribution, or in debulking -- when the volume of turmors is massive.

    Another option now mentioned occasionally is "B & R."   Much, much milder than ICE with or without SCT. Used both as a palliative and possibly as curative, but the objective seems most frequently to be palliative, with good success.  (Bendamustine and Rituxan)

    My oncologist told me I’m too

    My oncologist told me I’m too nice for ICE. 

     

    next step is a port, and a consult at Hopkins, who is already trying to recruit me for a clinical trial.

  • Evarista
    Evarista Member Posts: 336 Member
    edited May 2019 #26
    WoodlandGnome said:

    Final pathology

    The findings are consistent with recurrent classical Hodgkin’s lymphoma. 

    It CD30 positive, which means I can get the new B, good, because I don’t need more bleomycin. He is contemplating what else, because I can’t do more adromycin. So AAVD is out.

    Do they still do radiation? Cause I never did that before, so maybe it’s in the cards now. 

    CD30 CAR-T?

    I've been seeing reports on this for relapsed/refractory Hodgkin's.  Has it come up in your discussions? I think it's still "very early days" in the clinical trial stage, but something to keep an eye on down the road.  Good luck going forward.

  • WoodlandGnome
    WoodlandGnome Member Posts: 21
    #27
    Non-update

    just to keep this going... I spent an hour with my oncologist, during his lunch,  last week going over treatment options. That was really cool. He is recommended BvB + (likely) RT. Consult with radiation oncology is later this week. Consult with Hopkins is TBD. Port to be installed in 2 weeks, unless a cancellation on the surgeon schedule. 

    I was hoping to get into a trial Hopkins is doing, but I think I’ll be disqualified thanks to the stroke I mentioned above. But I’m OK with BvB. Hopping to avoid SCT.

    im not seeing the same oncologist as originally. I almost want to call him up. Partially to get his thoughts, and partially because I think he might be interested. But I doubt he’ll remember me - it’s been 12 years since I’ve seen him!

  • WoodlandGnome
    WoodlandGnome Member Posts: 21
    edited October 2020 #28
    Long time, but thought I’d update

    I was searching around for long term BMB pain, and stumbled back on this forum. Thought I'd post an update. 

    it was a long spring in 2019. I ended up consulting with three medical oncologists, including the guy who treated me 15 years prior and I hasn't seen in 11 years. Ended up going with 4 cycles if Brentuximab and bendamustine (BVB) and then used proton radiation for consolidataction. Took two months to get started. first chemo June 27, 2019. First ever chemo was July 1, 2004. Finished everything up in December. Then, my oncologist (who I loved) left practice. I switched to UMD. My Johns Hopkins consult left a really bad taste in my mouth. 

    so far, so good. Other than radiation killing my thyroid. And the annoying pain in my hip tonight that feels exactly where the BMB was in 2004. No clue what's up with that. It's had twinges occasionally over the years, but tonight it's really bothering me. 

  • WoodlandGnome
    WoodlandGnome Member Posts: 21
    edited October 2020 #29
    WoodlandGnome said:

    Non-update

    just to keep this going... I spent an hour with my oncologist, during his lunch,  last week going over treatment options. That was really cool. He is recommended BvB + (likely) RT. Consult with radiation oncology is later this week. Consult with Hopkins is TBD. Port to be installed in 2 weeks, unless a cancellation on the surgeon schedule. 

    I was hoping to get into a trial Hopkins is doing, but I think I’ll be disqualified thanks to the stroke I mentioned above. But I’m OK with BvB. Hopping to avoid SCT.

    im not seeing the same oncologist as originally. I almost want to call him up. Partially to get his thoughts, and partially because I think he might be interested. But I doubt he’ll remember me - it’s been 12 years since I’ve seen him!

    Ha! I even commented on

    Ha! I even commented on seeing my old onc. That was fun. He walked in reading the notes, looked at me, looked at the paper, and then said "I know you... remind me?" LOL

    my stuff was so long ago, it was a paper file, so I wasn't in there system, and he just had some notes that I brought with me. 

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited October 2020 #30
    So...

    It's turned out pretty well, it seems. We are all damaged goods as we go along. Did they ever speak of Adcetris (Brentuximab Vedotin)? It targets CD30 and is now approved for first line therapy in some cases. And TREC was designed to replace ICE, if that should ever arise. As to aches and pains, we like to lump them all together, or to fear the worst. They call it noise, and it happens to all cancer patients. But, sometimes, it gets pretty noisy. Good to hear from you!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited October 2020 #31
    po18guy said:

    So...

    It's turned out pretty well, it seems. We are all damaged goods as we go along. Did they ever speak of Adcetris (Brentuximab Vedotin)? It targets CD30 and is now approved for first line therapy in some cases. And TREC was designed to replace ICE, if that should ever arise. As to aches and pains, we like to lump them all together, or to fear the worst. They call it noise, and it happens to all cancer patients. But, sometimes, it gets pretty noisy. Good to hear from you!

    Aches

    Woods and Po,

    My BMB insertion point hurts at times, as does my old biopsy incision and my port hole.   The body recalls what the mind lets go....

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