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2C bulky seminoma remains the same after 3xBEP

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  • 2C bulky seminoma remains the same after 3xBEP

    Hi, hope everyone is doing well.

    I'm seeking a piece of advice on proceeding with pure bulky seminoma 2C, which remains the same after 3xBEP. I tried to google similar cases but didn't find anything.

    Here's the timeline:
    2019 - was studying in Canada (currently I'm 36), found some bump on my testicle but didn't pay attention.

    06 May 2021 - Finally visited a doctor and got confirmed, I have testicular cancer. AFP - 2.36 HGC - 1.78. Did CT scan the same day. Lymph nodes 145 x 109 x 76mm. Something on my 5th bone (Dr. said it's not metastasis) 30 x 8 x 4mm, left lung S6-S10 2 spots < 3mm, right lung S5 - single spot < 3mm.

    01 June 2021 - orchiectomy, histology indicated that it's pure seminoma (I never rechecked it).

    21 June 2021 - started my first round of chemotherapy. The scheme was the following: 30mg bleomycin (days 1,3,5), etoposide 100mg/m2, cisplatin 20mg/m2 days 1-5.Each cycle consisted of 21 days, although my doctor suggested taking 1 extra week of rest since my level of neutrophils dropped down to 0.4 * 10^9. I took the dose recommended by my doctor, medicine and by the next week I think my red blood cells were above normal. The situation repeats after my 2nd cycle, but this time we reduced the dose and the level was normal.
    Another thing that may potentially be strange, normally for the first 2 cycles cisplatin was dropping for 1 hour, and for the 3rd cycle, my doctor for some reason recommended switching it to 2 hours.
    Frankly speaking, droppers speed was managed by nurses manually, so sometimes it was 50mins, sometimes 1.5 hours. Not sure if it's relevant.

    13 August 2021 the last day of the chemotherapy was over. I got recommendations to do the markers, then CT scan and to proceed to the rplnd.

    2 Sep 2021 AFP - 3,82 B-HCG < 1.2 LDG 243

    04 October 2021 I did my CT scan. Normally it should have been in 1 month, but there was some delay since it took me a while to recover from the 3rd BEP and my level of creatinine was above normal. Unfortunately, the CT showed no significant differences. Lymph nodes 144 x 103 x 73. Bone spot - same, lungs - some new minor spots, due to bleomycin probably.
    I visited my doctor. He said, very rare, but sometimes lymph nodes shrinking a bit later, but it's already been almost 2 months, so I'm skeptical about this. Also, the doctor sent me to do the FDG-PET scan, he will recheck my histology as well. It's scheduled for Friday.
    Currently my markers: AFP - 2.79, LDG - 151, B-HCG < 1.2

    Frankly speaking, I'm extremely confused and scared. I'm afraid this may mean that my cancer is platinum resilient, and I read that it means that it's not curable. And the problem is that my case is extremely rare:
    2C seminoma is not that frequent, but cases, when lymph nodes didn't shrink, are probably even rarer. Probably all kinds of relevant research will not show any significance since the number of people involved will be low.

    I'm trying to build a plan on what to do next, here are the questions that currently bothering me:
    1) Currently my metastasis are still residing in lymph nodes and still quite large. If PET will show, that there's some activity, the normal process according to NCCN guide is either biopsy or RPLND. I'm afraid that while I'll be waiting for biopsy results, given the size of my nodes I'll get metastasis everywhere and RPLND will not be that efficient.
    2) What is the normal way to proceed? RPNLD -> 2 rounds of level 2 chemo -> HDCT -> "the hope is lost" or there's another pathway that will increase my chances?
    3) Is there are any high-tech approaches, that appeared lately, that may be useful in my case? I read about molecular-genetic histology, which provides better insights of cancer treatment, but have no information on if it's applicable for testicular cancer.
    I could send my histology to get the results while doing RPNLD, maybe it will help to modify round 2 chemo somehow. Or I also can send RPNLD results and wait to adjust my 2nd level of chemo.
    Maybe there's something new related to machine learning advancement?
    4) What are options available currently for HCCT in Europe (+Israel, Turkey, or something nearby that accepts foreigners). I believe my budget for the rest of the therapy is about 100-150kUSD, want to spend it right.

    Please, share with me any information that may be useful in my case, or just comment somehow. Maybe the questions I ask are just not right. Or ask about any information, you feel, may be relevant. It's been 5 days since I received this news and I feel I need to act quickly, but the whole situation is paralyzing me.
    Last edited by lega18; 10-13-21, 09:23 AM.

  • #2
    Hello,

    I actually think there’s a decent chance you are cured already. Germ cell tumors usually disappear, but can also turn into necrosis or fibrosis (dead tissue). Being seminoma, and having stable tumors for this long, are both good signs. Mine didn’t really shrink much despite tumor markers going negative and surgical pathology not being germ cell tumor. I did have malignant transformation of teratoma but that’s a separate issue.

    You can email Dr. Einhorn, considered the best testicular cancer doctor in the world, who regularly donates his skills to people in need that email him, at leinhorn@iu.edu. I’m sure his guidance would be quite helpful.

    Although I think there’s a significant chance you’ve been cured, here’s a bit on the worst case scenario-

    I actually had confirmed platinum resistant germ cell tumor, which they define as signs of growing cancer within 4 weeks of finishing BEP, and I had rapidly rising tumor markers. Believing the standard of care wouldn’t be enough for me, I became interested in a new high dose chemotherapy regimen being practiced at only one institution in the United States, MD Anderson, which is considered the best for cancer overall but not for germ cell tumors specifically.

    I’ve been in remission for 7 months, meaning I am most likely cured of germ cell tumor. I’ve heard of someone with bulky refractory seminoma that was cured by this, when the other doctors actually didn’t recommend regular high dose chemotherapy, believing it wouldn’t work. I’ve also heard of a late relapse of yolk sac being cured, which is also quite a tough sort of case. The initial data (100 patients) suggest that the survival rate is double what it would be with regular high dose chemotherapy with the Beyer prognostic score.

    I also know that the doctor who manages this chemotherapy is willing to offer doctors in Europe advice for how to administer the chemotherapy. I can connect you if you’d like, in the event that the worst case scenario is realized.

    I’ve linked information for the therapy below, along with information on the Beyer prognostic score.

    Good luck

    https://ascopubs.org/doi/10.1200/JCO...b%20%200pubmed

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5006186/

    https://ascopubs.org/doi/abs/10.1200....15_suppl.4519
    Turned 22 September 17,2020 Oct 20, 2020 Dx Stage 2c (bulky disease) nonseminoma. 90% teratoma 8% embryonal carcinoma 2% yolk sac. bHCG 154. Right I/O
    Nov 2, 2020. BEPx1. bHCG down to 6.3
    Nov 23, 2020. BEPx2 bHCG <1.2 (normalized)
    Dec 14, 2020. BEPx3. bHCG <1.2 Feb 3, 2021. Markers rising. bCHG 86
    Feb 22, 2021. TIPx1. bHCG down to 1.6
    March 15, 2021. TIPx2. bHCG down to .6
    April 19, 2021. Stem Cell Transplant 1. GemDMC HDCT
    May 25, 2021.Stem Cell Transplant 2. ICE HDCT

    Comment


    • #3
      I second colinjegan’s suggestion. A consult with an expert would be well advised and it may be that you’re cured.

      The PET well help to determine if the remaining masses are necrotic or if their is remaining cancer. I actually had some slight metabolic activity shown in my post treatment PET but am moving ahead with surveillance as the tumors have since shrunk in the 5 months since treatment ended.

      Personally, I would not have chemo and especially net HDC without very good reason
      6-20-2014 - HCG 43 mIU/mL 6-27-2014 - pathology: 3.6 x 3 x 2.3 cm seminoma, classic type 8-15-2014 - 1x carboplatin 1-15-2021 - recurrent seminoma with distant metastasis, HCG normal 2-8-2021 started 4xEP 3-29-2021 switched to 2xEC after 2xEP

      Comment


      • #4
        I agree that getting the opinion of a high volume testicular cancer expert, like Dr. Einhorn as mentioned, would be my approach. Where were you treated? If in Canada, where, if I might ask?

        Our friends at the TCRC keep a list of European experts at: http://thetcrc.org/experts.html and there are others that are capable. Are you in Europe now?

        Keep us posted on the PET results. At this point I would try to not get too far ahead of yourself, at least until you get more information/opinions. At least there was no disease progression and I would take that as a positive thing for now.

        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


        • #5
          Hi all,

          did my FDG-PET on Friday, just have received the results. Unfortunately, unpleasant (I used google translator, so maybe some medical terms are incorrect):

          1) paraaortic to the left hypodense hypovascular conglomerate of secondary altered
          lymph nodes up to 96x71x144 mm in size (with CT scan of OBP from 06/05/2021 to 103x77x145 mm) with
          hypermetabolism of FDG, SUVmax = 4.35, in the structure there is an additional lower polar renal
          artery. The left ureter is pushed laterally, involvement is not excluded.

          I've just got myself familiar with the term SUVmax. I might be wrong, but for pure seminoma, before chemo, it's normally ~10, but still, 4.35 is a sign, that there, some viable masses. My last day of chemo was on the 13 of August, 2 months had passed, the result should be reliable.

          2) after left-sided orchiectomy, in the surgery access area, reactive changes SUVmax = 2.47

          I don't know how to treat this. Does it mean that the orchiectomy was inaccurate or is it a sign of invasion, so this tumor may feed the lymph nodes and that's why it doesn't shrink that much? Have anybody come across the same statements in FDG-PET?


          For the rest - no further metastasis, only these 2 zones. I'm going to write an email to Dr. Einhorn and think about, where should I proceed with my treatment. I've mentioned, there were some strange things before like chemo course delay and that droppers speed was managed partly by me, can't afford another mistake.


          So based on the NCCN guide my next steps should be a biopsy, then resection and since it will be incomplete due to the large residual masses, 4 courses of 2nd line chemo, right?


          @colinjegan thank you for your feedback. Can't imagine, what you've been through, hope you are cured and it will never relapse. May I ask you, how much did you pay for this special chemo treatment? I need to plan my budget, to keep the money for the worst-case scenario.

          @BrendanF what level of SUVmax did you have? Were there some strange statements on the surgery access area like in mine?

          @Mike I've been treated in Russia. Thank you for the TCRC list. The Russian guy mentioned looks very decent, based on his publications. Will try to get an appointment with him. Could you please suggest, what approach may I use to choose the clinics in Israel to proceed with my treatment? I still not sure, what is the rating list on testicular cancer for clinics in Russia, so for Israel, my knowledge is even worse. The only idea that came to my mind is to check the TCRC list and find clinics where mentioned professors work.



          Thank you all guys for your replies and support! Also, if someone has insight if the molecular genetic analysis is useful in testicular cancer treatment - would be great.
          Last edited by lega18; 10-18-21, 02:19 PM.

          Comment


          • #6
            I've just found and read this nice article, written in 2018 and calmed down a little, since PPV for PET looks low.

            https://www.zora.uzh.ch/id/eprint/15...inOnc_2018.pdf

            90 cases similar to mine were investigated. Since my case is rare, looks like it's maybe the largest relevant study. I'll read it more carefully, but there 2 open questions for me now
            1) How should I determine that my tumor relapsing? If it will further increase in size - it will tear me apart. Only by b-HCG levels? But it was low initially.
            2) Why it's stated in the article that biopsy is not recommended for seminoma? For me currently, it looks natural to perform a biopsy, If everything is fine - wait for the lymph nodes to reduce, then stabilize and then do the resection. It should be easier to do since the size will be decreased. If not - do a resection and proceed to level 2.

            Maybe I'll put additional arising questions to this post later, got to sleep, have an appointment with my oncologist tomorrow morning.

            Comment


            • #7
              Yeah, the Global Germ Cell Cancer Group (G3) looked at their patients with PET for residual mass and many patients appeared to just have fibrosis. The issue is trying to figure our if that is you or if you still have active disease. Perhaps more imaging is needed to assess if it is growing, stable or shrinking. I would ask the likelihood of a biopsy finding anything before I underwent the procedure. To me, I think of it as an orange and if the only active cancer in the orange is the size of a seed, then what are the odds when you stick a little needle in it that you will hit that seed sized area for the results you need. I'm not a doctor but it seems pretty low.

              As far as the experts, they do change around too so I would contact the institutions, do a Google search on them, etc. to find the information. It looks like the TCRC has a link to the urology department so I would start there for that particular doctor. He is a urologic oncologist vs. a medical oncologist, so chemotherapy probably isn't his specialty, and more like the RPLND but I would think he knows how to treat TC overall.

              Keep us posted on the email to Dr. Einhorn.

              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
                Treated in Russia? Highly doubt abt their expertise( im russian ,so no judgement) Where are u located now? Email Dr Einhorn and if possible come to USA for treatment of HDCT

                Comment


                • #9
                  I Ipaid next to nothing for the high dose chemotherapy because I had good insurance. It will be hard for you to get this therapy in America where it will be expensive without insurance (not to mention housing and travel). However you probably could get financial aid from their institution, I’m just not sure exactly how much.

                  My recommendation would be to reach out to him if Dr. Einhorn recommendeds high dose chemotherapy, explaining your financial situation, and asking how you can receive the therapy whether in the US or in Europe. I know he has been willing to work with European Doctors in the past for it. His name is Dr. Nieto and his email is ynieto@mdanderson.org. It would be helpful for him to know the details of your case, the hospitals you’ve been treated at, and your financial situation.

                  I believe if high dose chemotherapy is indicated then your prognosis is good. Many people thought incurable have been through this protocol, and being seminoma gives you a favorable prognostic score I think.
                  Turned 22 September 17,2020 Oct 20, 2020 Dx Stage 2c (bulky disease) nonseminoma. 90% teratoma 8% embryonal carcinoma 2% yolk sac. bHCG 154. Right I/O
                  Nov 2, 2020. BEPx1. bHCG down to 6.3
                  Nov 23, 2020. BEPx2 bHCG <1.2 (normalized)
                  Dec 14, 2020. BEPx3. bHCG <1.2 Feb 3, 2021. Markers rising. bCHG 86
                  Feb 22, 2021. TIPx1. bHCG down to 1.6
                  March 15, 2021. TIPx2. bHCG down to .6
                  April 19, 2021. Stem Cell Transplant 1. GemDMC HDCT
                  May 25, 2021.Stem Cell Transplant 2. ICE HDCT

                  Comment


                  • #10
                    Relapsed Seminoma has 85-90% cure rate. It will be killed with hdct.
                    Last edited by Beauty20201; 10-19-21, 01:00 PM.

                    Comment

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