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  • #16
    Thank you, Blondie. We will think about it. AFP of 238 was just before HDC end of October, HDC was 3,4,5 of November, Transplant 8 Nivember, last AFP 29 of November

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    • #17
      Blondie, how far apart were your HDCs?

      Comment


      • #18
        It took until one week after my transplant until my AFP started to decline. I don't know the exact numbers, but the AFP approximately halved every 7 days after that, meaning it would have been ~350 three weeks after transplant. My AFP just before chemo was 400, so comparing these two numbers there was almost no drop in my case. If your husband's AFP starts to half every 5-7 days from now on, it is a very good sign. Is he doing blood tests every week?

        My HDC cycles were 6 weeks apart, transplant to transplant. This is longer than the norm in the US, but seems to be the norm in Sweden and Norway. I also had a quite severe adverse liver reaction, and my oncologist wanted to wait with the second cycle until my ASAT and ALAT normalized.
        Sep. 2015: Diagnosed with large primary mediastinal GCT and lung met.
        Sep.-Nov. 2015: 1xPEI/VIP, 1xBEP, 2xTIP, markers normal after chemo.
        Jan. 2016: Surgery to remove residual mass. Pathology shows immature and mature teratoma.
        March 2016: Markers rising. PET/CT shows 4 active mediastinal lymph nodes.
        April-July 2016: 4xGAMMA (dactinomycin, HD methotrexate, oxaliplatin, paclitaxel).
        July 2016: SBRT mediastinum, markers rising. PET/CT shows tumors in mediastinum, pleura and abdomen.
        Aug.-Oct. 2016: HDC, 2xEC, markers normal, almost all tumors resolved.
        Jan. 2017: Markers rising. PET/CT shows activity in mediastinum, pleura, abdomen. Oral etoposide and SBRT on active tumors. PD.
        March-April 2017: cisplatin, gemcitabine. PD.
        May 2017: pazopanib. PD.
        June 2017: imatinib.

        Comment


        • #19
          I was thinking maybe you could try to get in touch with Darren Feldman at MSKCC, since he has experience treating late relapses with HDC, albeit with a slightly different regimen. I contacted him before beginning HDC, and he was very friendly and reviewed my case thoroughly.

          By the way, here is another article indicating that late relapses are indeed curable with HDC: https://www.ncbi.nlm.nih.gov/labs/articles/20483152/
          Sep. 2015: Diagnosed with large primary mediastinal GCT and lung met.
          Sep.-Nov. 2015: 1xPEI/VIP, 1xBEP, 2xTIP, markers normal after chemo.
          Jan. 2016: Surgery to remove residual mass. Pathology shows immature and mature teratoma.
          March 2016: Markers rising. PET/CT shows 4 active mediastinal lymph nodes.
          April-July 2016: 4xGAMMA (dactinomycin, HD methotrexate, oxaliplatin, paclitaxel).
          July 2016: SBRT mediastinum, markers rising. PET/CT shows tumors in mediastinum, pleura and abdomen.
          Aug.-Oct. 2016: HDC, 2xEC, markers normal, almost all tumors resolved.
          Jan. 2017: Markers rising. PET/CT shows activity in mediastinum, pleura, abdomen. Oral etoposide and SBRT on active tumors. PD.
          March-April 2017: cisplatin, gemcitabine. PD.
          May 2017: pazopanib. PD.
          June 2017: imatinib.

          Comment


          • #20
            Hi Blondie! I just realised how extraudinary tough it was when you found out that your AFP actually increased after 2 HDC! I would have been very frustrating

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            • #21
              Our oncologyst did not ask for weekly tests, he actually wanted to wait till January as my husband said he was not doing second transplant. We will go to GP and ask her to give him multiple forms for weekly tests. If he were doing second transplant it would be in two weeks from now, i can not imagine it, his hemoglobin and neutrofils are still quite low and keep falling. His bowel has just stubilused this week, i have not started feeding him normal diet due to neutrofils being low, he got only 1 kg back and is still quite weak. This infection took all his strenghth out, and i feel, he is lucky to get out of hospital without major organs failure apart from GIT, hopefully his blood will start to recover. So it is not easy. Thank you for your support and referencies

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              • #22
                I keep my fingers crossed that the AFP will decrease substantially from now on, and that his blood also recovers soon.
                Sep. 2015: Diagnosed with large primary mediastinal GCT and lung met.
                Sep.-Nov. 2015: 1xPEI/VIP, 1xBEP, 2xTIP, markers normal after chemo.
                Jan. 2016: Surgery to remove residual mass. Pathology shows immature and mature teratoma.
                March 2016: Markers rising. PET/CT shows 4 active mediastinal lymph nodes.
                April-July 2016: 4xGAMMA (dactinomycin, HD methotrexate, oxaliplatin, paclitaxel).
                July 2016: SBRT mediastinum, markers rising. PET/CT shows tumors in mediastinum, pleura and abdomen.
                Aug.-Oct. 2016: HDC, 2xEC, markers normal, almost all tumors resolved.
                Jan. 2017: Markers rising. PET/CT shows activity in mediastinum, pleura, abdomen. Oral etoposide and SBRT on active tumors. PD.
                March-April 2017: cisplatin, gemcitabine. PD.
                May 2017: pazopanib. PD.
                June 2017: imatinib.

                Comment


                • #23
                  We have done afp test today 158, could be due to a different lab, but no drop.haemoglobin got a bit better, wbc are still low.

                  Comment


                  • #24
                    Hi Blondie, do you have Dr Feldman email address?

                    Comment


                    • #25
                      I'm sorry the AFP did not decrease from the previous measurement. I would still keep measuring it weekly. As you know many factors can cause an elevated AFP level, liver toxicity being one of them. Was your husband's liver also affected by the HDC? Dr. Feldmans e-mail address is feldmand@mskcc.org.
                      Sep. 2015: Diagnosed with large primary mediastinal GCT and lung met.
                      Sep.-Nov. 2015: 1xPEI/VIP, 1xBEP, 2xTIP, markers normal after chemo.
                      Jan. 2016: Surgery to remove residual mass. Pathology shows immature and mature teratoma.
                      March 2016: Markers rising. PET/CT shows 4 active mediastinal lymph nodes.
                      April-July 2016: 4xGAMMA (dactinomycin, HD methotrexate, oxaliplatin, paclitaxel).
                      July 2016: SBRT mediastinum, markers rising. PET/CT shows tumors in mediastinum, pleura and abdomen.
                      Aug.-Oct. 2016: HDC, 2xEC, markers normal, almost all tumors resolved.
                      Jan. 2017: Markers rising. PET/CT shows activity in mediastinum, pleura, abdomen. Oral etoposide and SBRT on active tumors. PD.
                      March-April 2017: cisplatin, gemcitabine. PD.
                      May 2017: pazopanib. PD.
                      June 2017: imatinib.

                      Comment


                      • #26
                        Hi, Blondie! Dr Feldman said to watch AFP, and consider surgery when getting stronger. Thank you for the email address. My husband's perception of his feet has changed today, instead of just having numb feet he started getting nerve pain - like shooting pain from the soles of his feet up the legs. Do you know what it means? Is he getting better or worse? It is definitely different from what he has experienced do far.

                        Comment


                        • #27
                          Originally posted by Ozy View Post
                          My husband's perception of his feet has changed today, instead of just having numb feet he started getting nerve pain - like shooting pain from the soles of his feet up the legs. Do you know what it means? Is he getting better or worse? It is definitely different from what he has experienced do far.
                          Sounds like his peripheral neuropathy is getting worse, it means nothing as far as treatment success. Some guys report their neuropathy got better with time, mine did not, but I only got numbness in my fingers.

                          Dave
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #28
                            Just as Dave said this is most likely peripheral neuropathy, and is completely unrelated to treatment success. I can also feel a sudden shooting from the feet sometimes, although it is painless in my case.

                            Did I interpret you correctly that Dr Feldman does not recommend a second transplant, but rather surgery?
                            Sep. 2015: Diagnosed with large primary mediastinal GCT and lung met.
                            Sep.-Nov. 2015: 1xPEI/VIP, 1xBEP, 2xTIP, markers normal after chemo.
                            Jan. 2016: Surgery to remove residual mass. Pathology shows immature and mature teratoma.
                            March 2016: Markers rising. PET/CT shows 4 active mediastinal lymph nodes.
                            April-July 2016: 4xGAMMA (dactinomycin, HD methotrexate, oxaliplatin, paclitaxel).
                            July 2016: SBRT mediastinum, markers rising. PET/CT shows tumors in mediastinum, pleura and abdomen.
                            Aug.-Oct. 2016: HDC, 2xEC, markers normal, almost all tumors resolved.
                            Jan. 2017: Markers rising. PET/CT shows activity in mediastinum, pleura, abdomen. Oral etoposide and SBRT on active tumors. PD.
                            March-April 2017: cisplatin, gemcitabine. PD.
                            May 2017: pazopanib. PD.
                            June 2017: imatinib.

                            Comment


                            • #29
                              My husband had rplnd on the 6th of April. Surgery went well:3.5 hours instead of expected 8. Recovering well. Today talked with the surgeon: histology has come back. They found cancer, but it looks like it was inside teratoma, has anyone heard of such a thing? Do not know yet which type of cancer they found, the surgeon requested further details, will probably have them next week

                              Comment


                              • #30
                                Teratoma is (in most cases) a tumor type that sits in one spot and slowly grows, surgery (RPLND) is very effective against it as long as they had clear margins (got it all). If they only found and removed teratoma, it is a good thing!
                                6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                                6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                                7/7/15: bHCG 56, AFP 42, LDH 322
                                7/13/15 - 9/18/15: 4xEP
                                10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                                10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                                4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                                4/20/16: RPLND @ IU - teratoma only!
                                5/10/17 all clears up to this date!

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