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  • Received devastating News

    Well yesterday I went to the Cleveland Clinic and was told that I only have one small 3cm tumor on my spine by the shoulder blades. Bad news: a lecsion appears there and it may be possible that it ate through the spine. Well after hearing this, I became sick in the consulatation room and dropped to the floor - instantly sweating and nearly blacked out. Oncologist said 40-50 % cure rate. My local oncologist disagrees with the Clevleand oncologist. First he says the doctor up there had no business to get us worked up as he thinks that yes there is a tumor on the spine but doesn't think it has ate throught it. Thinks that the nerves in the back near the tumor are causing the discomfort between the shoulder blades. Says we must start TIP chemo immediately and he will contact either Einhert or his assistant at Indiana and present my case. Says i will need a bone marrow transplant regardless in the future and would recommend Indiana as the place to do it. He says 40-50% cure rate for the TIP chemo, 40-50% cure rate for the bone marrow transplant.

    My question is that how much do you guys think I will fare? THe doctors say i'm young and healthy in every other respect. My markers normalized after the third cycle of EP. My afp last week was 102, BHCG <2. Tomorrow I go to the hospital at 10am to have surgery for a port, bone scan, and begin the Taxol. Do you guys think I may have a good chance of beating this? I'm so scared.
    Diagnosed August 2005
    R/O August 2005 AFP 210

    4xEP beginning December 2005
    End Feb/March 2006 AFP 4.6
    April 2006 AFP 22 and rising

    Tandem Stem Cell Transplant 7/06 - 9/06
    December 07 AFP = 3.3
    December 07 CT = Clear!

    15+ months remission

  • #2
    I had a primary mediastinal germ cell tumor. I had about a 45% cure rate. I know how it feels to think you have half a chance. Honestly I took zoloft through all of it and it helped. It's scary times, but man faith and love will pull you through if you let it. Your young, that makes a huge difference. I've heard attitude does to from several people, but who knows. It's such a shock for a while, but when it sets in just know that you will beat it. You have no choice but to..so stay strong brotha, and keep a good attitude.

    Comment


    • #3
      Thanks josh for sharing your experience. Yeah, its really scarry for me. Its nice to know/hear from others who were told their odds were only 40-50% as well. What is zoloft and what is it for? What treatments did you have to go through and what was your AFP throughout?
      Diagnosed August 2005
      R/O August 2005 AFP 210

      4xEP beginning December 2005
      End Feb/March 2006 AFP 4.6
      April 2006 AFP 22 and rising

      Tandem Stem Cell Transplant 7/06 - 9/06
      December 07 AFP = 3.3
      December 07 CT = Clear!

      15+ months remission

      Comment


      • #4
        You are going to have to take this one step at a time. You wouldn't be a cop if you weren't tough. Once you have cancer your chances are always 50/50. Either you are going to beat it or you're not. So don't think in terms of statistics. Think instead that you are going to get rid of this thing. We are here for you, praying and pulling for you. Dianne
        Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
        Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

        Comment


        • #5
          stay strong

          Here is the deal from someone who is going through this right now. My husband has had a reoccurrence after 4 x BEP. Actually his tumor markers never entirely normalized (so this is worse than you). Anyways he is starting high dose chemo and stem cell transplant next week. Dr. Einhorn is treating him. This is second line therapy for Dr. Einhorn. He does not do TIP. He recommends stem cell and high dose after a reoccurence and he says there is a very good chance at a cure with this but you have to start it ASAP. His statistics are 56-60% cure with the high dose chemo and stem cell transplant alone. There is an even higher cure when it is combined with surgery. Try try try not to worry and face this head on the best you can. Make sure that your oncologist contacts him. I will forward you e-mails from him that state these cure rates. The cure rates your being quoted are not correct.

          We figure he knows what he is doing and we are going to trust him. Please keep me updated with your treatment. We may very well be in Indiana when you are there and we will support each other.

          Also I like this quote. “Give yourself permission to hope, even in the face of all the statistics that physicians may present to you. Statistics are only statistics. They are not you. There is no such thing as false hope.”

          Contact me with any questions you may have.
          Erin (caregiver)
          Hubby Stage IIIC Diagnosed 10/27/05,
          HCG 512,000 AFP 636 LDH 1012, I&O 10/28/05
          1 x EP, 2 x VIP, then 2 x BEP (10/31/05-1/06)
          Sterotactic Radiation to two brain tumors 12/05
          Sterotactic Radiation to new brain tumor 4/4/06
          Whole brain radiation 4/15 -5/18/06
          Tandem High dose chemo and stem cell 6/5/06-7/31/06 - markers normalized
          RPLND with 9cm x 24 cm abd mass removal 9/14/06 - Only teratoma and necrotic tissue removed
          Currently on surveillance

          Comment


          • #6
            Hang in there, my friend. Statistics are just statistics. I have faith you can beat this thing. We're all here for you and pulling for you.

            You'll be in my thought and prayers every day.

            Jim
            Fish
            TC1
            Right I/O 4/22/1988
            RPLND 6/20/1988
            TC2
            Left I/O 9/17/2003
            Surveillance

            Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

            Comment


            • #7
              Originally posted by tccancercop
              My question is that how much do you guys think I will fare?
              You're going to kick cancer's butt!
              Scott, [email protected]
              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


              Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

              Comment


              • #8
                My afp level was 750 something. One of my buddies from cancer had his at around 1700. He had a 45% cure rate as well, he beat it seven years ago. Those statistics are for the whole bunch man. Don't forget that. Your probably in a 15% range if not less for having tc at your age, so they don't include that and it does make a difference. Just don't doubt that you will beat it, because you will. Thank God for technology, or else we'd both be screwed. Oh zoloft is an anti depresent. That buddy I was telling you about advised me to take it during the whole deal, and I'm telling you bro I never got depressed like you think I would. Everyone was complementing my attitude the whole time. seriously you should think about it just for while your going through this because it's so easy to let it all drag you down. Well I got to run but hang in their man. Josh

                Comment


                • #9
                  lies, damn lies and statistics

                  Here's some perspective: even if the statistics the Cleveland Clinic oncologist gave you are correct, you still have a better chance than Lance Armstrong had.

                  Someone has to be in the 50% survivor bracket, right? Why not you? Who has a better chance - a 24-year-old cop who is necessarily in good shape for his job or a fiftysomething guy who never leaves his desk all day? Statistics say they have an equal chance but it just ain't so!

                  I agree with Josh's recommendation to look into some type of antidepressant or at least some counseling. There's no shame in getting some psychological help to get through this.

                  -TSX

                  Comment


                  • #10
                    Well thanks for everyone's replies so far. My oncologist did confer with Dr. Einhorn that in my case we are going to forget about TIP and go directly to a tandem marrow transplant. Only problem is the insurance thing. So the lady from Indiana says I should apply for benefits in Ohio since I will be disabled from work, and that they still may cover services in Indiana since this is a special situation (and also the caseworker advised the same thing). Lady from Indiana says this will cost nearly $100,000 for this procedure. I don't give a **** how much its gonna cost, and I told I want to start this as soon as possible and she said she agrees/understands. I want to go get cured and get this over with and deal with the medical bills later and prefer Einhorn. My oncologist spoke with him and says he is the best with marrow transplantation and said I would be in good hands. If i get denied from my insurance or benefits, I'm pretty much dead! Tomorrow I go to the Human Services to fill out forms and get things hopefully going. I need to get to Indiana.
                    Diagnosed August 2005
                    R/O August 2005 AFP 210

                    4xEP beginning December 2005
                    End Feb/March 2006 AFP 4.6
                    April 2006 AFP 22 and rising

                    Tandem Stem Cell Transplant 7/06 - 9/06
                    December 07 AFP = 3.3
                    December 07 CT = Clear!

                    15+ months remission

                    Comment


                    • #11
                      tccancercop:
                      Please don't let the money be an issue, you can always make money. Your only thoughts now should be on getting better.
                      Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                      Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                      Comment


                      • #12
                        Contact the Live Strong foundation because they have programs to help offset the cost of chemo.

                        Indiana and Sloan kettering are the best places to get the high dose chemo/stem cell transplant done. you'll be in good hands at Indiana. They have an amazing staff and are always there for the patient. My husband went last year and overall it was a good experience. They try to keep you outpatient until you get sick and then they check you into the BMT unit, which is very nice.

                        Patti
                        Wife of Kevin Murphy
                        Diagnosed 7/16/04 100% Choriocarcinoma
                        Oriechtomy 7/20/04
                        4xBEP 8/04-11/04 BHCG:1200 (lung only)
                        Rediagnosed 12/27/04 BHCG: 50
                        1xVIP 1/05 (lung)
                        HDC/Stem cell Indiana 2/05-4/05 BHCG: 51-4.5 (lung)
                        HDC failure 5/05
                        3xGemzar/Taxol 6/05-9/05 (lung only)
                        VP-16 w/Avastin 9/05-1/06 (lung only)
                        Cyberknife 5" lung tumor 2/06
                        cyberknife 6 brain tumors 3/06
                        1xOxaliplatnin 3/06 (liver, lungs, kidneys, left hip)
                        Passed away 4/13/2006

                        Comment


                        • #13
                          Good suggestion, Patti. The Lance Armstrong Foundation's partner is CancerCare. See this page for information on financial assistance.

                          I just read these restrictions, though:
                          CancerCare is very sorry to report that due to the enormous demand on our financial assistance services, our financial assistance grants for men with cancer have been exhausted except in the following categories:
                          • Men who live in New York City and State, Connecticut and New Jersey
                          • Men who live in the areas that we serve in San Diego
                          • Men who would be eligible for LAF survivorship grants (post treatment 6 months or more)
                          Last edited by Scott; 06-06-06, 08:06 PM.
                          Scott, [email protected]
                          right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                          Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                          Comment

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