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Lifeís not always fair.

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  • Lifeís not always fair.

    I beat Testicular cancer in 2010. Unfortunately I released this year. Iíve been doing what I can.
    I contacted Einhorn who replied that my best curative option was RPLND surgery. My case went in front of the tumor board at IU. I was called and told since my AFP is so high and disease is in my bone and lungs that I could have the surgery itís not a best option.

    Iím feeling rather hopeless right now. Maybe thereís some clinical trials or something.

    Or maybe this is just the end for me.

  • #2
    I can only imagine what you're going through and my heart sank reading that. I don't know you but you'll be in my prayers. Many have been told before that their cancer is terminal or inoperable and still manage to beat the disease. Try to have hope and don't give up. Contact every expert you can. Look into clinical trials. Maybe have the surgery anyway.

    I can't really offer any legitimate advice. I just wanted to say something. Stay strong and find hope.

    Comment


    • #3
      I'm sorry to hear about your tough position! I guess I would just be looking to the experts for their advice on your options to proceed.
      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!
      9/27/2018 all clears up to this date!

      Comment


      • #4
        Pwsuba,

        Afraid I'm not clear, I think you are saying they refused to do the surgery Dr E recommended?

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

        Comment


        • #5
          So I emailed doctor E he had told me that would be my best option. But I guess since my AFP is still so high and thereís disease in my bone (where the tumor caused a fracture) and a couple spots on my lungs along with the tumor in my abdomen.

          They would do the surgery but since the other spots it wouldnít be curative I guess.

          According for Dr. Cary, Dr. E was on the tumor board which came with the opinion that surgery isnít best option.

          Iím going to reach out to Dr.E and hopefully thereís something else that can be done. When I initially spoke to Dr.E I donít think he had my full history.

          Iíve been so scatter brained and stressed and anxiety ridden through all this I need to try to calm and get myself onto a clear path.

          I donít know if itís an option but I want to inquire about HDC w/ stemcell. Or maybe some kind of clinical trial.


          Since I received the call tonight Iíve been going in circles in my head. From there has to be something else this canít be what kills me. Not now. Not at 31. Then I just get hopeless that I wonít see Christmas. Tears come and go.

          Comment


          • #6
            I am so sorry that this is happening to you. I have been living in the same dark place with my husband. I have been doing a lot of research on recurrence recently. From your post history it seems like you did 4-EP after your recurrence. It does seem super strange that your doctor did not recommend traditional salvage therapy (TIP or VeIP). You also said that your tumor shrank some which should mean it is not completely platinum refractory. The gist of the research basically states that HDC with STC can be curative in situations with poor prognostic factors, late relapse, even refractory disease. The numbers are never what you want them to be but it has helped some people in really bad situations. Keep fighting for yourself.

            Comment


            • #7
              Oh man, so sorry... I was given a terminal diagnosis with TC as well. Really difficult to process, I know. I tried to focus on something I wanted to achieve before I died but to be honest I didn't get too far with it. I realised I needed another appointment to look forward to so I wasn't just dealing with palliative care so I found another oncologist to see who specialises in TC (via Mike on this forum). I wasn't expecting much from it, I just liked having someone else to tell me how rare/unlucky I was, and wondering if there'd be a clinical trial or something. In the end it was the start of the process that saved my life, or has given me a longer life at least. Point is, my mental state improved just for having another appointment to go to and wondering what I might learn. Feel free to ask me anything else or private message me.

              Comment


              • #8
                Well Iíll be on my way for an in person appointment with Dr. Einhorn next week. Iím praying that itís not a waste of time where he tells me thereís basically nothing to be done.

                Comment


                • #9
                  A bit nervous, Iím going to see Dr. Einhorn tomorrow morning. Iím hoping he has something good some kind of hope. If not Iíve already heard back from MD Anderson looking to set me up to see Dr. Nieto.

                  Comment


                  • #10
                    Great to hear! Take a walk up and down canal park and around monument circle. They are pretty cool places. There is also a cancer survivors park thing here : 985 Indiana Ave, Indianapolis, IN 46202
                    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!
                    9/27/2018 all clears up to this date!

                    Comment


                    • #11
                      How did it go with the appointment at IU?

                      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


                      • #12
                        It went fairly well.
                        They took some blood to do a like genetic profile of the cancer (gardiant -sp)

                        He did say with the late relapse itís not always so fast growing, so that made me feel a little better in terms of not feeling like everything needed to be done yesterday. Thatís not to say I donít want to get things done ASAP.

                        Thereís the, I believe it was TIP chemo as an option

                        Thereís a possibility of maybe a targeted therapy if the genetic tests shows anything.

                        There may be a immunosuppressant clinical trial as well.


                        Iím still planning on going to MD Anderson to meet with Dr. Nieto. However Dr.E basically dismissed high dose with stem cell as a non effective treatment. I was a little bummed by that.

                        Comment


                        • #13
                          OK, I was going to suggest the Make an Impact program at Memorial Sloan Kettering https://www.mskcc.org/research-progr...ut-make-impact as they will do genetic profiling of resistant germ cell tumors. Then, if there is an actionable target you may be able to get the medications for free as part of the Tapur Study https://www.tapur.org/patients

                          Actionable targets are rare for testis cancer but if you can get the genetic profiling done, then to me it is at least worth giving it a shot.

                          Keep us posted.

                          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

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