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Another Stage 3c - My Story

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  • #91
    Thanks, RJKD! I really appreciate your input! I know about T cells. Here is my thought on that. I already have a low immune system right now after HDCs. Plus, I got on remission with surgery. So, if there were some active cells around, they would have showed themselves already in the last two years. Now as far as other cancers go, I think EVB virus induced (attacking B cells) lymphoma could be a concern. I am sure they will evaluate this risk and discuss potential prevention. All this said though, my MELD score is not very high, (low 20s) and I have a blood type O. So, that puts me in a tough spot to even get a liver, even if I am listed....

    Btw, I accept all the risks cancer coming back, etc. 3 year mark is 9 months away. If it comes back, it comes back and that will be the end any way. I'd rather die with Option B than A. My 90-day survival is only 75% under current circumstances.
    Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
    Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
    4*BEP AFP 20 end of 4*BEP
    May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
    Surveillance (blood & X rays) and all clear for 24 months
    April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
    4xTIP - almost normal AFP, but started rising again
    2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
    Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
    2 Lung Wedge Resections -

    Comment


    • #92
      Tarc

      first of all I am glad you only had a "false alarm" because of the AFP increase. (which seemed to be minor to me above)

      If i understood well and your current 90 days survival chance is really only 75% (are you sure?) then it is a very strong PRO argument for option B. The strongest imaginable argument.

      I would try to make this thinking as rationalistic as possible and make the decision based on numbers.

      Below study investigated the cancer ocurence chance among transplant receivers (also liver). the chance is 2-4 fold of that of healthy people.. For you we could with 4-5 fold due to HDC.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3310893/

      I would define the survival chance of option B based on studies like this and compare that to 75%. If the difference is less than 10% it is no brainer to me.

      Maybe it is already thought through this in this way just thinking out loud

      Comment


      • #93
        Tarc,
        My gut feeling was to go with option B, since your description of your current situation sounds pretty difficult to deal with to me. However it sounds like you've kind of adapted & accepted the problems & may be afraid to lose what you still have to yet another procedure(s). I cant possibly imagine being in your shoes. You have been on one he!! of a ride already & have dealt with it better than I think I could have.

        It sounds to me like you still want to keep fighting & try to get as close to "normal" as possible. I'd say as long as the stats aren't overwhelmingly against you, take the chance.Yeah, you'll be kicking yourself if it goes south, but if you don't, you'll be kicking yourself down the line anyway for not doing it. It's the "what ifs" that get, after all.

        Maybe, just maybe, you won't need to kick yourself at all, though.

        Good luck whatever you decide.

        Dave
        Last edited by Davepet; 09-21-17, 02:59 AM.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

        Comment


        • #94
          Thanks, Dave. You've guessed it right. However, based on my MELD score, I have a 90-day mortality rate of %25. I've taken statistics to know that I am not going to be around for very long with the status quo, and my limited time is spent on dialysis. Therefore, I am leaning towards Option B. That said, they may tell me that I am not a candidate, and that would leave me with Option A... I don't know what I would do at that point.. Become a nihilist I guess...
          Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
          Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
          4*BEP AFP 20 end of 4*BEP
          May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
          Surveillance (blood & X rays) and all clear for 24 months
          April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
          4xTIP - almost normal AFP, but started rising again
          2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
          Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
          2 Lung Wedge Resections -

          Comment


          • #95
            Not to over simplify things as this is obviously a difficult decision. You know what status quo is but what would it be worth to be able to run free of dialysis and ammonium intoxication for 2 weeks, a month, three months, a year? If that time free is appealing then I would measure that time in the quality and not quantity that it contains. I think I would go with option B. The other thing to consider is that finding a match and even getting on a list may take time and if you wait too long to make the decision can things change and take that option B away?

            Best of luck on coming to the decision that is best for you. I know it must be mind and heart wrenching.

            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

            Comment


            • #96
              So, I got my first call on Wednesday. They said there was a match but I was a substitute, meaning there was another patient higher on the list. That patient ended up getting the liver. I was left with the waiting game. But, I think it is getting close. I started a gofundme campaign to get some support for life with a transplant. I shared a very brief history of what I went through as well. I am not sure if this is the right platform for this. So, I will keep it short. You can find my story here. https://www.gofundme.com/selman039s-liver-transplant
              Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
              Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
              4*BEP AFP 20 end of 4*BEP
              May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
              Surveillance (blood & X rays) and all clear for 24 months
              April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
              4xTIP - almost normal AFP, but started rising again
              2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
              Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
              2 Lung Wedge Resections -

              Comment


              • #97
                Seems appropriate here. I'm sure being that close and missing this one solidified your opinion on whether you want a transplant or not, given the emotions you probably went through after the phone call!

                edit: it looks like your gofundme is doing very well!
                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!
                3/29/2018 all clears up to this date!

                Comment


                • #98
                  Given how unlucky I am cancer-wise, I am extremely lucky and grateful to have wonderful friends and family who came out to support me.
                  Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                  Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                  4*BEP AFP 20 end of 4*BEP
                  May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                  Surveillance (blood & X rays) and all clear for 24 months
                  April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                  4xTIP - almost normal AFP, but started rising again
                  2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                  Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                  2 Lung Wedge Resections -

                  Comment


                  • #99
                    Wishing you the best! Hopeful you will be able to receive a new liver & kidney.
                    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


                    • Good on you, man!! Made a small donation and will try to spread the word. Wish you the best!!
                      July 2016 - Left I/O
                      December 2016 - BEPx3
                      All clear for 1 year!

                      My Testicular Cancer Support Kit
                      First Oncologist Visit Checklist
                      Simplify Cancer Podcast

                      Comment


                      • 3 years ALL CLEAR!
                        Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                        Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                        4*BEP AFP 20 end of 4*BEP
                        May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                        Surveillance (blood & X rays) and all clear for 24 months
                        April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                        4xTIP - almost normal AFP, but started rising again
                        2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                        Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                        2 Lung Wedge Resections -

                        Comment


                        • Originally posted by Tarc79 View Post
                          3 years ALL CLEAR!
                          Awesome! I can't wait for my 3 year all clear. That is when my life insurance will drop to more reasonable pricing. I signed up 1.5 years out and did find someone who would cover me, but it is very expensive.
                          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!
                          3/29/2018 all clears up to this date!

                          Comment


                          • Originally posted by Tarc79 View Post
                            3 years ALL CLEAR!

                            Awesome News!!! Congratulations!!!

                            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

                            Comment


                            • great news!!!
                              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

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