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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
    Thanks to all for your kind words, it means a LOT to me.

    One exact month after the lung surgery his bhCG IS NOW INDETECTABLE. We are so full of joy... The 48 hours after the test were a torture... now we have hope again.



    Just to clear some points of my brother's story:

    Micas: gracias de corazón por tus buenos deseos y por tomarte la molestia en escribir, siento tu bondad desde aquÃ* y me da fuerzas.

    Ryan Bi: the original testis pathology was examined by two different laboratories, it was 100% pure seminoma, but Dr Einhorn said that the seminoma, somewhere somehow mutated to a nonseminoma (choriocarcinoma) in the mets (he said that because his bhCG after the orchiectomy was about 100.000), all his doctors here in Spain said it was crazy to think it was a choriocarcinoma somewhere when two differents laboratories said it was a seminoma, but now we can confirm is true, because the lung met pathology report is choriocarcinoma.

    I would like Dr Einhorn to be wrong, but he wasn't... so now we know why a "100% pure seminoma" kept relapsing during 1 year, after HDC... but now he's fine, he has the "all clear" and we hope it lasts forever...

    So in summary: seminoma in the testis, but at some point it mutated, probably at the lymph nodes, to a choriocarcinoma, and from the lymph nodes to the lungs and liver, but that was more than a year ago, now he has normal tumour marker, all clear in radiology images and he is just in surveillance.

    He keeps taking his IMATINIB pills every morning, as these have almost no side effects, so this is the only treatment he's receiving, just in case they are helping somehow.

    I hope to log in in two weeks again, and keep posting these awesome news... he deserves it.

    Leave a comment:


  • metroman
    replied
    thats awesome.. great news..

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  • Smartie
    replied
    I'm thrilled to hear his markers are now normal!

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  • Harxxony
    replied
    One day before my I/O, doctor put some paper in my hand to sign. It was some declaration for participation in some TC research, they wanted me to sign that they could freely use my blood, semen and testicular tissue in some research. I didn't have problems with blood or semen, but I remember that I was concerned about the tissue (tumor): what if pathologist does something wrong and misdiagnoses my tumor, and rest of the sample is not preserved, but used for something else? I also remembered that everyone was really polite to me until I finnaly signed it, but I almost left the hospital without I/O just because that (almost) blackmail.

    I know that misdiagnoses are relatively common in pathology, and it is not shame to be wrong, but what is the problem with some of the doctors just to try to think, not just to blindly follow procedures?

    Leave a comment:


  • Ryan Bi
    replied
    Hi Hermana,

    I am really shocked with this situation. Will they review your brothers pathology slides again? Is it possible to check the remaining one?

    You are doing a great job. Also should never give up. Now the tumor markers are normalized. It is a good and positive sign. It is easy to say “stay strong”. But pain and fear will always there. Trust Dr.E, he will give a treatment plan soon. Sending a hug as a TC patient’s Mumm.

    Amy, Ran’s Mumm

    Leave a comment:


  • Micas
    replied
    Hola hermana
    Mucha fuerza e fe vos deseo
    Asi es, cuando no tienes confianza en el medico, hay q cambiar
    Haz echo lo correcto en pedir una 2a opinion
    Espero sinceramiente q tu hermano se ponga bien, y q Dr E vos ayude
    Saludos y suerte

    Leave a comment:


  • Hermana
    replied
    Hello all.

    Thank you very much for your words, I think you can't know how much it helps me, how knowing there is someone there comforts me.

    We already have the histopathology of the lung nodule, is positive for choriocarcinoma (the histopathology of the testicular tumour was 100% pure seminoma). Nothing Dr Einhorn didn't already know, but something that his doctors here in Spain didn't know or wanted to believe...

    I don't know about the next steps, I'm waiting the answer of the angel Dr Einhorn, but for anyone who is reading me...

    PLEASE, PLEASE contact Dr Einhorn, please be brave enough to fight for you or for your beloved one, and defy if needed your doctor opinion if you think there is something wrong, if you don't feel well treated, if you don't understand anything o think you are not being listened... please, contact him. He is an ANGEL IN EARTH.

    Many months ago I had enough confidence to defy his first oncologist here in Seville, I did what I thought was the BEST for my brother, no matter who could felt bad because of my behavior, but I have to admit that I felt bad, unsupported (how important is this), and even criticized by many, doctors and family, the only thing that kept me strong was my love for my brother.
    So, as I said, my love for my brother kept me confident and still, but with this new information... it only reaffirms to me and us to the rest of our tiny world that we made right, we made the best decision possible, and it was well done.

    I'm so sorry for this words, I can imagine this is not the appropiate place to write them, but I just needed it.

    Please, keep strong, look for the best, and be in touch with the Angel in Earth, Dr Einhorn.

    Leave a comment:


  • TCfight
    replied
    Hermana, I am soo happy for you!!

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  • Ryan Bi
    replied
    Hi Hermana,

    So great news! You and your family went through so much, but this is good ending!

    Leave a comment:


  • biwi
    replied
    great to hear!

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  • Hermana
    replied
    Two days after surgery his bhCG is in normal range!

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  • Hermana
    replied
    Hello all, hello Smartie, thanks for your interest.

    Sorry for the silence, but the forum went under problems and later all have been a little chaos.

    His tumour markers continued increasing, although very very slowly. His bHCG reached 35.56 three weeks after my last message. His oncologist wanted to do a PET-CT scan to know what was happening, and continue with Gem + Tax while we were waiting for the PET-CT scan results, I wanted to add IMATINIB, as the MAKE AN IMPACT genetic test showed that his tumour had a kit mutation that is sensitive to this drug, and I found a publication of a young men who was successfully treated with Gem+Tax+Oxiplatin+IMATINIB as third line chemo.

    Well, just only 5 days after my brother started with the IMATINIB pills, his tumour markers went down from 35 to 21. They don't know if the IMATINIB was the "guilty", but we felt very relieved and happy.

    The PET-CT scan showed a solitary lung nodule, and his doctor and Dr Einhorn agreed that it had to be removed.

    Past Monday 28th October (two days ago) he went succesfully under lung surgery, now he is recovering very well at the hospital, we hope to be at home tomorrow if all things goes well. I hope so.

    We have an appointment next 13th November and I just wrote to Dr Einhorn to know his opinion.

    He is currently taking his IMATINIB pills, as it has almost no side effects, and we are waiting to know his tumour markers and the histopathology of the nodule.

    We hope this war ends here. 1,5 years of nonstop fighting, I hope we beat this damned thing.
    Last edited by Hermana; 10-30-19, 09:20 AM. Reason: gram error edition

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  • Smartie
    replied
    How's things, Hermana?

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  • Hermana
    replied
    So today markers are in 15.39 (0-10 normal range), just a little higher but feeling the terrible panic again.

    Leave a comment:

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