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When HDC doesn’t work

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  • 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.

  • #2
    Is it still respectable? Surgery is an option if the PET scan shows the cancer to be in a confined spot.

    Comment


    • #3
      When it all started, just one year ago, he had metastasis in liver and lungs. When we finished 4xBEP in October a liver biopsy showed necrosis.

      When it relapsed in December, the growing masses were the residual ones of the retroperitoneum (lymph nodes?) and two of the lungs. The liver remained the same, now we don’t know what is happening, we hope to do the CT scans and MRI as soon as possible, but we suspect that is the lymph nodes the problem, as he has been having lower back pain for a week now.

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      • #4
        What are the actual hcg numbers?
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

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        • #5
          His b-HCG is 54 mUI/mL, normal range in this laboratory 0-10.

          Thanks for replying, there is a strange comfort feeling to know that someone appart from you is thinking how to beat this damned thing.

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          • #6
            Hermana, lo siento mucho por vosotros
            Si tas tomografias estan limpias, yo me haria una ecografia del otro testiculo
            Suerte y fe

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            • #7
              Micas makes a good point, has his other guy been checked?
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

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              • #8
                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

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                • #9
                  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?
                  45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                  Waiting...

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                  • #10
                    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.

                    Comment


                    • #11
                      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
                      Oct. 2005 felt lump but waited over 7 months.
                      06.15.06 "You have Cancer"
                      06.26.06 Left I/O
                      06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                      06.30.06 It's Official - Stage I Seminoma
                      Surveillance...
                      Founded the Testicular Cancer Society
                      6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                      For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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                      • #12
                        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...

                        Comment


                        • #13
                          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.




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                          • #14
                            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
                            Oct. 2005 felt lump but waited over 7 months.
                            06.15.06 "You have Cancer"
                            06.26.06 Left I/O
                            06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                            06.30.06 It's Official - Stage I Seminoma
                            Surveillance...
                            Founded the Testicular Cancer Society
                            6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                            Comment


                            • #15
                              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.

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