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  • #16
    Guys,how is it going for you? Patrick,whats new?Hope every1 are ok.

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    • #17
      Thanks Beauty20201. Third round of HDCT is going more or less OK so far, except that it am not eating a lot and that fatigue is brutal. The thing which annoys me the most is a substantial hearing loss (I have even trouble following the TV). I get accustomed to the idea that I’ll need hearing aid once the treatment is over. But that’s a small price to pay if I am cured. On the positive side, an IRM done just before the third round showed a disappearance of the peritoneal and retroperitoneal masses which I had hence a complete response to HDCT so far. This is obviously excellent news but I remain cautious having already relapsed once. What about you? Is your husband still scheduled to start HDCT soon ?
      Sept. 2020: diagnosed with an extra gonadal germ cell tumor (large retroperitoneal mass + several smaller lymph nodes. No lung, liver or brain metastases). Seminoma.
      Oct 5 - Dec 3.: Neoadjuvant chemo (3X BEP)
      Jan 19, 2021: L/O RPLND to eliminate the residual mass (which contained 5% of active cells)
      Feb 4. - March 4: Adjuvant chemo (Taxol + Gemcitabine)
      April 8: declared in remission, 5-10% max chance to relapse
      June 10: relapse, start second line chemo consisting of 1X VIP and 3X HDCT (= carboplatin and etopiside, with stem cell transplant)

      Carpe Diem

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      • #18
        We just had another CT Scan after 2xTIP
        Good news cancer shrunk overall,gone from lungs,tumor markers are all norm now.
        Bad news:The doctor said cancer is persistent high dose is needed,its still pushing the kidne,still in stomach and lymphs. More likely the dose will be adjusted according to the kidney function.

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        • #19
          Just started my high dose & stem cell transplant today at royal marsden in London. Hopefully this will be the treatment that sorts things out & gets me some closure for a few years. Hope everyone doing ok

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          • #20
            Kevin,hubby is starting collection tomorrow. How r u feeling? How many days it took u to collect cells and how many uve got collected?

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            • #21
              Good luck Kevin. The first days are the easiest ones (boredom is actually the greatest enemy) but you’ll eventually go through this. Sending you a lot of positive vibes.
              Sept. 2020: diagnosed with an extra gonadal germ cell tumor (large retroperitoneal mass + several smaller lymph nodes. No lung, liver or brain metastases). Seminoma.
              Oct 5 - Dec 3.: Neoadjuvant chemo (3X BEP)
              Jan 19, 2021: L/O RPLND to eliminate the residual mass (which contained 5% of active cells)
              Feb 4. - March 4: Adjuvant chemo (Taxol + Gemcitabine)
              April 8: declared in remission, 5-10% max chance to relapse
              June 10: relapse, start second line chemo consisting of 1X VIP and 3X HDCT (= carboplatin and etopiside, with stem cell transplant)

              Carpe Diem

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              • #22
                Beauty, it took me 2 days when I got the stem cells collected back in June. At that stage it was done incase it was needed in the future because my tumour markers and pet scan were ok back then. I think the way it works here is they collect enough for 3 transplants but assess things after each transplant. 2 will definitely be done but the third may not be needed just depends on each case individually. Thanks for kind words pat things going ok so far I generally coped ok with previous chemo regimes and didn’t have much sickness but I’m well aware this will be different once I get the stem cells back. That’s due to start on Friday

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                • #23
                  Good luck Kevin, hope it all goes well for you.
                  Jan, 1975: Right I/O, followed by RPLND
                  Dec, 2009: Left I/O, followed by 3xBEP

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                  • #24
                    Hubby collected 7.07 million stem cells in 1 day which was more than enough for 2 transplants. He just started 1st day of chemo and his piccline was placed. He had his carboplatin dosage reduced due to the 1 kidney working. Hopefully it will kill the rest of the cancer. Patrick,Kevin how are u both?

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                    • #25
                      Beauty, I got the stem cells back yday after the 3 days of chemo. Yesterday I struggled a bit to be honest had high temperature after getting the cells back, they gave me anti biotics & my potassium was low aswel. Hopefully today a better day

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                      • #26
                        @ Beauty: happy to hear that your husband was able to start chemo. I did it with one kidney so it should work for him as well
                        @ Kevin: hang in there ! You’ll be now entering the most difficult part of the treatment but it’s OK to rely on IV fluid (ie not to eat) and rest a lot if needed.
                        As for me: I was discharged from hospital last Sunday (19th) and I have been able to enjoy home since then. Got a PET scan on Thursday and will have the results next Wednesday. I’ll keep you posted.
                        Sept. 2020: diagnosed with an extra gonadal germ cell tumor (large retroperitoneal mass + several smaller lymph nodes. No lung, liver or brain metastases). Seminoma.
                        Oct 5 - Dec 3.: Neoadjuvant chemo (3X BEP)
                        Jan 19, 2021: L/O RPLND to eliminate the residual mass (which contained 5% of active cells)
                        Feb 4. - March 4: Adjuvant chemo (Taxol + Gemcitabine)
                        April 8: declared in remission, 5-10% max chance to relapse
                        June 10: relapse, start second line chemo consisting of 1X VIP and 3X HDCT (= carboplatin and etopiside, with stem cell transplant)

                        Carpe Diem

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                        • #27
                          Kevin ,hope ull feel better soon. Keep it strong.
                          Patrick,glad u r finally out? U shpuld be cured now!, how is ur hearing? Keep us updated

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