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  • Immunotherapy

    Hi,
    Has anyone had any luck with immunotherapy for recurrence of TC? Already had BEP, HDC with Stem Cell Rescue, and RPLND. Thank you for any insight.

  • #2
    Is this being offered to you? I have not heard of anyone working on immunotherapy for TC but it might be out there. What sort of response did you have to earlier treatments?
    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      Hi,
      a guy from a german board had some luck with a combination of drugs. Here is a report about him: http://austinpublishinggroup.com/hem...-v5-id1196.pdf

      Comment


      • #4
        Davepet, The BEP began in Dec 2016 through March 2017 but did not do the trick. The AFP dropped significantly but did not normalize. The HDC with Stem Cell 3 rounds normalized my tumor markers by August 2017. Had two surgeries to remove teratoma. One was a neck mass, the other was the RPLND with extensive mature teratoma removed, as well as a kidney. But March 2018 the AFP began to rise 8, 15, .. almost doubling every 2 weeks. April 26; 2018 AFP was 68.1 and we were told Systemic Recurrence. Scans showed mass as well as enlarged lymph nodes. GEMOX chemo for palliative care or immunotherapy clinical trial through Sloan Kettering Memorial. They did not accept us. Einhorn does not have a trial at this time but soon he said. MD Anderson in coordination with Dana Farber has an immunotherapy trial and we have been in talks. Our oncologist has read inclusions and exclusions and is trying to make it happen. When at Sloan we did do the Impact test but still waiting results. The GEMOX was started in meantime but haven’t been able to complete full round. Only two day ones of a cycle with the 2nd day one being a 20% reduction due to platelets dropping. They are saying with all the past chemo and stem cell bone marrow is banged up. When starting GEMOX AFP was 86. It has had a partial response and dropped to 34.
        Thank you Derjayger for the report.

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        • #5
          I asked the leading doctor at Wake Forest about this and he said they hadn't approved it yet for this type.

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          • #6
            I wont swear to it but i think i read somewhere the moffit-davis in the Tampa area might i say might be doing clinic trials
            Jan 2012- U/S mass in Left testicle
            Feb 2012- I/O performed to remove cancer
            Mar 1,2012- pathology pure seminoma
            Mar 7, 2012 PET SCAN stage IIa
            April 2012 Mayo clinic carbolite.
            May 2012 carbolite failed, started BEP x3
            August 7th 2012- BEP complete
            April 2013 CT/PET show relapse
            May 2013 RPLND
            Aug 2013 Relapse again Started VIeP x2
            Oct 2013 HDC AUTOLOGOUS
            Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
            Feb 2014 confirmed false positive all clear FINALLY !
            Jan 2015 1 year cancer free Pet/CT scan
            Jan 2016 2 years cancer free "Pet/CT scan
            Jan 2017 3 years cancer free "Pet/CT scan
            Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

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            • #7
              Did Memorial Sloan Kettering mention their Make An Impact study to you? With it they do a free genomic profile of the tumor that may have a rare chance of finding an actionable target. Have you had any genomic/molecular testing of the tumor?

              https://www.mskcc.org/research-progr...gy/make-impact

              If you haven;t looked into it , then it may be worth it. If there is an actionable target then the ASCO's TAPUR study may be an option to obtain the medications.
              https://www.tapur.org/patients

              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


              • #8
                Yes we did the make an impact test but that was first week in May. Our current oncologist formerly worked with and is friends with Feldman. She has reached out and the results are still not back. However we do have an appointment with her tomorrow. He began a 3rd round of GEMOX Monday and she is checking in on him. Last tumor markers dropped AFP dropped to 18.1 so hopefully not chemo resistant. How can we obtain the genomic/molecular testing of tumor?

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                • #9
                  Originally posted by Bcerebe View Post
                  Yes we did the make an impact test but that was first week in May. Our current oncologist formerly worked with and is friends with Feldman. She has reached out and the results are still not back. However we do have an appointment with her tomorrow. He began a 3rd round of GEMOX Monday and she is checking in on him. Last tumor markers dropped AFP dropped to 18.1 so hopefully not chemo resistant. How can we obtain the genomic/molecular testing of tumor?

                  Great to hear that the AFP dropped. Great to hear that you did Make An Impact too. Dr. Feldman is awesome. The Make An Impact results will have the genomic/molecular testing, I do believe it takes about 6 weeks, so hopefully the results are back soon. To my knowledge there are not many actionable mutation targets with germ cell tumors but if the results do indicate a target then the TAPUR Study may help.

                  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


                  • #10
                    Thanks so much Mike. I am also actively looking for trials because his oncologist said that she doesn’t think the GEMOX will work forever. Immunotherapy trial with Dana Farber and MD Anderson is on our list. Dr E should be having a new trial soon as well he said.

                    Comment


                    • #11
                      Good luck finding trials.
                      Son Grant
                      dx 12/21/16 at age 17

                      BEP x3
                      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                      Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                      Comment


                      • #12
                        We did an immunotherapy trial with MSK. Our cancer situation is super weird so I'm not sure if our experience is applicable to anyone else.

                        We got just 1 dose and the adverse effects were so significant we were briefly hospitalized. But the doctors also saw evidence it was 'working' immediately (we have no markers so 'working' is kind of a judgement call). One theory is that the more it is working, the more AEs you get as your immune system revs up. I also read a paper that germ cell tumors (tc, ovarian, etc) are more likely to have adverse effects than some other tumor types, so just a heads up. They've also recently discovered that people with certain genetic markers react to the drugs by hyper-progressing .

                        Bummer that Dr E says he has nothing live right now. His guadecitabine/sgi-110 trial looked really promising and the ASCO abstract said there were two CRs so I was surprised it flipped to 'suspended'. I was hoping it was an option for us when the immunotherapy stops working.

                        We did genomic testing with MSK months ago, and I never got any results, actually.
                        Last edited by AthenaArtemis; 07-17-18, 10:33 AM.
                        Partner to L
                        Bulky seminoma
                        Diagnosed 2016. 4XEP, 2xHDC, immunotherapy. No RPLND possible.

                        Comment


                        • #13
                          Athena,
                          What were the adverse reactions from immunotherapy?
                          Last time I spoke to Dr. E was towards end of May and he said by end of summer his trials should be up and running. We are currently on the GEMOX palliative chemo. Although because of the drop in platelets it has caused, we have never had a day 8, it continues to be reduced, and the third cycle had to be postponed by two weeks. However he has had a response. AFP was 86 when beginning GEMOX and as of last week it was 14.1. He has a CT scan on a Tuesday so we will know more after that about progression of disease. Since his germ cell also contains teratoma, the scans will be able to determine much more.
                          Our oncologist spoke to Funt at MSK on Monday and he said to give it one more week for the testing results. How long ago did you consent to the testing for the Impact Test? What is super weird about your cancer situation and having no tumor markers?

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