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When HDC doesn’t work

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  • Hermana
    started a topic When HDC doesn’t work

    When HDC doesn’t work

    What’s next?

    I’m devastated. We’ve just contacted Dr Einhorn, we are waiting for an appointment with a doctor here in Spain to make new studies (CT scans and MRI), but I need a light of hope, I need to know someone who won even with 3rd line of treatment. I can’t even think properly.

    Just a reminder, first 4xBEP in Spain, then 1xTIP in Spain and 2xHDC in Indiana with Dr Einhorn. Finished 3th April. Today markers (bHCG) are rising again.

    I can’t accept anything but fight, no comfort words, I need to believe that we can beat this damned thing. My world is dissapearing.

  • Hermana
    replied
    Hello all, I just wanted to bring GOOD news.

    All the doctors agreed: he needs more chemo. He started Gemcitabine + Taxol on 24th July. The tumour marker started to drop inmediately, all his doctors (Seville, Barcelona and Einhorn) are very happy.

    He doesn't feel bad at all with this chemo (just very tired 24-48 hours after the chemo), only 1 day at week, with ZERO nausea (I even can't believe this) so all this month he's been with (almost) normal life and enjoying it, eating all the food he wants, not losing weight and feeling like normal.

    We already know that the only new nodule was the lung one (they are very happy because of this too), so the doctors want him to receive at least 3-4 courses of Gem+Tax and then check, if the nodule is still there, do the surgery (they say it's placed on the external side, so it will be an "easy" surgery).

    His bhCG is 63 now (normal range 0-10), with the last shot of chemo given yesterday (1 course complete), so we think this is a very good sign.

    Any similar experiences or support comments are welcome.

    Thanks for being there.

    Leave a comment:


  • Dook
    replied
    The professor at Gustave Roussy :
    https://www.gustaveroussy.fr/fr/karim-fizazi

    Leave a comment:


  • Hermana
    replied
    Hi Dook, thank you very much for the links, and for telling me the name of the center of excellence there in France, it's good to know and I'm looking now for more information.

    Although the histology showed that the tumour was seminoma, it's considered that it's a nonseminoma due to the high level of bHCG (probably choriocarcinoma).

    Today we'll repeat the blood test.

    Leave a comment:


  • Dook
    replied
    Here in France at Gustave Roussy, they have a new protocol for poor prognosis called GETUG13 but it looks like it's only for TGNS...
    https://www.thelancet.com/journals/l...490-5/fulltext
    https://www.sciencedirect.com/scienc...59804917313321
    https://www.mdedge.com/internalmedic...dard-poor-risk
    I don't know if it can help...
    Gustave Roussy is a center of excellence in TC

    Leave a comment:


  • Hermana
    replied
    Thanks Mike for replying.

    We haven't look for any clinical trial yet, well, I have, but I think that we prefer to try with the "standard" before try something more.

    In our last visit to the oncologist he told us to try some other drugs, as Ifosfamide or Taxol, as he only received 1xTIP. I don't know if this is better than to try Gemcitabine + Taxol now as Dr Einhorn suggested, I'll ask them in the next visit. I will ask them too about the Etoposide pill.

    And for this:

    Originally posted by Hermana View Post

    - the brain MRI came out clean.
    - ct scan shows what I think is an improvement, it shows just one nodule in the lung (16 mm), the rest (he had multiple nodules in the lungs) are in complete remission. Shows just one nodule in liver (the rest dissapeared, and he had two in May) and the lymph nodes (retroperitoneum) are smaller than they was in May.

    So overall I think it shows an improvement (although I don't know if the nodules were there before or they are new ones).
    The oncologist doesn't know yet these results, but as I said I think that with "only" 2 nodules and the lymph nodes maybe surgery do have a role in cure him, although Dr Einhorn didn't mention it. But for me, is not the same to have "multiple" han to have just two, I mean from a surgical approach, don't know if this has any sense.

    Leave a comment:


  • Mike
    replied
    After HDC with stem cell rescue, I would ask if further use with standard second-line therapy (VeIP, VIP, TIP) plays any role. Unfortunately, it is my understanding that they would not offer any useful response as the doses are much lower than that of the HDC.

    With you being in Spain, have you looked into any EU clinical trials that may be available?

    Mike

    Leave a comment:


  • Hermana
    replied
    By the way, I want to specify a bit more his treatments:

    - I/O with histology 100% seminoma, metastasis in lymph nodes (15 cm), multiple in lungs and liver. A week after I/O his bHCG was 100.000.
    - 4xBEP Normalized tumour markers
    - Almost 3 months later, bHCG began to increase (144) and PET-Scan showed activity in lymph nodes and two lung spots
    - 1xTIP + 2xHDC Normalized tumour markers
    - Almost 3 months later, bHCG began to increase again... but his scans appears almost completely clear (lymph nodes 5 cm now)

    I know about gemcitabine + taxol, but I think that he can try VeIP, VIP, TIP and others too, apart from surgery...

    What do you think? Any coments or suggestions are appreciated.




    Leave a comment:


  • Hermana
    replied
    Thanks to all for replying.

    Thanks Mike for the link to "Make an Impact" from Sloan Kettering, we are in contact with them.

    I have news:

    - the brain MRI came out clean.
    - ct scan shows what I think is an improvement, it shows just one nodule in the lung (16 mm), the rest (he had multiple nodules in the lungs) are in complete remission. Shows just one nodule in liver (the rest dissapeared, and he had two in May) and the lymph nodes (retroperitoneum) are smaller than they was in May.

    So overall I think it shows an improvement (although I don't know if the nodules were there before or they are new ones).

    Dr Einhorn says to try gemcitabine + taxol, but didn't mention anything about surgery.

    Last markers were in 54 (bHCG), I want him to do another test this week.

    I know that probably Dr Einhorn is who knows best about testicular cancer, but don't you think that surgery has to play a role in his case with just 3 masses?

    I'm now reading and re-reading "My chorio case" post from @jjjw2835...


    He still feels a mild lower back pain, but overall he is pretty pretty well...

    Leave a comment:


  • Mike
    replied
    After HD chemotherapy, I agree that any possible surgical interventions do have a role. You may also want to look into having a molecular analysis of the tumor. While actionable mutations are rare with germ cell tumors, occasionally, they do exist and may offer a therapeutic role. The team at Memorial Sloan-Kettering even has a program for this, which you can contact them and see if he is eligible. Their website is: https://www.mskcc.org/research-progr...gy/make-impact and click on the "Learn More" button.

    Mike

    Leave a comment:


  • Hermana
    replied
    Thanks for replying Harxxony. I know the bHCG is low, but when he first relapse, in December '18, he started to feel pain again, and his markers were at 144. He had a big mass in the retroperitoneum (17 cm aprox), after 4xBEP it reduced to 7 cm and after HDC to 5 cm, but I think is the way that the mass press against the vertebral colum or something what it causes the pain, even with low bHCG.

    Although you gave an idea, my eyes bleed reading this forum, and now I can remember some cases of rising markers and stable CT scans, that finally show something in the bones, maybe I can suggest it tomorrow to the oncologist, I hope he will be kind and proactive, and colaborate with us, because this is not his oncologist (his oncologist is on holidays) and we'll have to aske him "a favor" to do the test.

    I'll ask him for an ultrasound of the other testicle.

    Any more suggestions are welcome.

    About the HDC, we are from Spain and went to Indiana, with Dr Einhorn, to do the HDC. He received autologus marrow trasplant. I think my brother did very well.

    Leave a comment:


  • Harxxony
    replied
    Just my opinion: bHCG is still too low to indicate some massive abdominal process, pain in abdomen can be because various reasons, esspecially after high dose of chemo. And it is too soon for anything to grow so big to cause pain, so pain is probably unrelated to TC, alltough elevated bHCG indicates relapse, unfortunatelly. Did he receive blood marrow or peripheral blood transplant or something during HDC?

    Leave a comment:


  • Hermana
    replied
    Thanks to both.

    I’ll ask for it to the doctor this tuesday in his next appointment. But we are pretty sure that there is something wrong in his abdomen that needs urgently a RPLND. He feels more pain now

    Leave a comment:


  • Davepet
    replied
    Micas makes a good point, has his other guy been checked?

    Leave a comment:


  • Micas
    replied
    Hermana, lo siento mucho por vosotros
    Si tas tomografias estan limpias, yo me haria una ecografia del otro testiculo
    Suerte y fe

    Leave a comment:

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