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Not the results I wanted!!!!!

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  • Not the results I wanted!!!!!

    Yesterday I went back to Moffitt Cancer Center for my 9 month Blood-work, Ct- Scan, and Dr. Visit.. The Ct- scan looked OK according to my doctor and all else was nomal... I got a call from him today stating that my AFP and ldh was normal.. Unfortunatly my HCG was elevated 8.2.. this is the first test in which my HCG was elevated.. My doctor said that he would have expected a raise in my afp in the case of a reoccurence . At this piont I have to have another Ultrasound ruling out TC again and I have to have blood tests done every week to track the HCG. If anything is found from the Ultrasound then I will have to have another surgery.. IF the HCG kepps rising then they already told me I would more than likely have to undergo High-dose chemo with stem cell transplant.. There is a chance that the marker is falsly eleveated due to low testosterone , in some cases (very rarely) some men with 1 testicle have elevated HCG(5-17) all the time.... I guess at this piont I will have to just wait and see what happens... Needless to say--I'M FREEKING OUT!!!!!!!!!!!!!!! DON
    Moffitt Cancer Institute
    CANCER SUCKS
    Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal [email protected] 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

  • #2
    Oh Don I'm so sorry. If you can think of anything at all that I can do please let me know.
    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.

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    • #3
      Sounds like it would bother me too. BUT the absence of the AFP increasing is good news. . .it may be very well that your low testosterone level is the culprit! Especially with your had NON-SEMINOMA i would be more concernced at this point with increasing AFP levels.. . .keep us up to date. I'm sure everthing is going to turn out ok.
      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

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      • #4
        Don, what was the pathology on the RPLND. Teratoma, Cancer, or Necrosis/Fibrosis? Also, what made them give you salvage chemo TIP.

        If its any comfort, you are very good risk for responding to salvage chemo, but i would contact an expert, probably Dr. Einhorn at INdiana University to increase your chances. If you had a testicular primary ( not extragonadal) and a complete response to chemo, and low markers at relapse ( your HCG is very low ) than your chances of response are 60% or higher that you will respond to the high dose. In addition there are very promising additional therapies such as (ipo) Irinotecan, Taxol, and oxaliplatin. But before getting yourself to concerned call Dr. Einhorn. He will be happy to answer your questions about falsly elevated HCG. HCG can have a few false positives whereas AFP tends to be fairly accurate.

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        • #5
          Keep us all posted, Don, and good luck.
          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!

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          • #6
            How ya doin today? I was thinking about you a lot last night, oh stop that get your mind out of the gutter. Remember you were in the Navy not me. Anyway later I'm having a shot of jagermeister (for you) and chasing it with a guinness (for Andrew). Anybody have pickled eggs?
            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


            • #7
              I would definitely repeat the blood test for HCG immediately to assure that the result is accurate and before going to ultrasound etc. Labs do make mistakes.
              Age 33, Right I/O Mar '05, 90% embryonal, 10% teratocarcinoma, Surv until 4 mo CT (+), 3 x BEP Aug/Sep '05, CT 10/05 ok, CT 2/06 ok, CT 3/06 ok, CT 6/06 ok, X-Ray, Blood 8/06 ok, Sperm Count 09/06: Low but active, CT 10/06 ok, X-ray 12/06 ok, CT 02/07 ok, X-ray/blood 4/07 ok, CT 6/07 ok, X-ray/blood 09/07, CT 10/07 ok, CT 4/08 ok, CT 10/08 ok

              LAST NIGHT I DREAMT 1000 LIES
              I CAN SEE THE DAWN
              THROUGH A DIFFERENT SET OF EYES

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              • #8
                best of luck to you.your story was an inspirartion to my buddy Don.

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                • #9
                  Thanks to All!!!!
                  OK!!! I guess right now I am in Limbo... --- My wife spent the day in Miami with some family and the kids visiting some kind of Egyptian exibit at an art museum--- This gave me the day to make piece with my situation--whether its a false alarm or I need more treatment,I've spent the whole day wondering what is going to happen( I guess most people would do the same). I really don't know how to feel.. It could be something as simple as a false reading on the test... I have tried to figure it out all day --How could a strand of cancer that produces HCG now show itself after 9 months post chemo/surgery.. Never once since I was diagnosed has my HCG been elevated--NEVER- My AFP after original diagnosis was 44953 and went up over 46000 after the I/O before declining rapidly per round of chemo.. Original diagnosis HCG ,normal, after I/O normal, after BEP and TIP chemo HCG normal, before and after RPLND normal, everyother test until thursday,NORMAL, --I just don't undrstand how another strand that never even showed itself could have made it past all the other treatments and surgeries!!!!!!! My only elevated marker through my whole battle was my AFP-- which is now normal...... I guess if it is something that needs treatment we caught it early seeing my HCG is only at 8.2--- This was the first time that my labs were drawn at Moffitt clinic since being released in may-05 all other test were always done at independent labs in my town and the results were faxed to Moffitt within 2-3 days.. Maybe that's the Culprit..... If for some reason I need more treatment "I'm Ready"- reluctant but ready... My 2 biggest fears would be how Could I possibly tell my Kids I am sick again and how would I hold up against high- dose chemo( if needed) with 1 kidney (that has already taken a beating)..So many questions running through my head right now.. If treatment is needed , how is it going to affect my quality of life in the future after I beat cancer again. I already have peripheral neuropathy fairly bad..Would that get worst.. The list goes on and on........Though I haven't been in control of my situation since I was diagnosed in Sept 04, I always felt like I knew all the answers and knew what was going to happen--Even when I was not able to understand ( due to my condition and medications)and make decisions for myself and my wife took over the decision making when I really took a turn for the worst last time I, always felt at peice with what was going on and knew I would be OK ---I guess my problem is that for one of the first times in my life " I don't know what to say, What to do, how to feel, how to act, Im Angry, Im Sad, Im Confused, I feel Lonely(though I'm not alone), I'm scared(but not for me--For my wife,kids and family)--I don't know--I really just don't know...I guess I should just stop complaining and let the cards fall were they may.. Whatever is going to happen is going to happen !!!!

                  Sorry to keep going on and on about this and be a complete downer to all!!!!!
                  Bill--Thanks for the Phone-Call.. I got your message... You are a true freind!!!!
                  Moffitt Cancer Institute
                  CANCER SUCKS
                  Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal [email protected] 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

                  Comment


                  • #10
                    Don:
                    Face the situation and move foward there is no other option. Head up, chest out. I know you are motivated to succeed, determined as hell to persevere. Your physical condition may be an issue but it alone will not carry the day "Your Mind is Your Best Weapon". These principles have seen you through tough days in the past and will serve you well again.
                    Today I will certainly play some bad to the bone and have a shot or two of Tequila. I played that as I walked Jason out for his first day of chemo and now I will play it for you. The nerve of this to come after you again, no way pal it can't win you will crush this thing.

                    P.S. I will also have some beer. I need to keep those kidneys flushed clean. You never know when someone might need one.

                    The new Avatar is Jason's tattoo of the Chinese symbol for indomitable spirit.
                    Last edited by dadmo; 03-06-06, 10:42 AM.
                    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


                    • #11
                      Don, we're here for you. Keep the faith!
                      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


                      • #12
                        Originally posted by dadmo
                        I need to keep those kidneys flushed clean. You never know when someone might need one.
                        Dadmo, coming from most people, I'd think that was a joke. Coming from you, well, I believe you really mean it!
                        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


                        • #13
                          Just think of how greatful I would be to Don. The fact that he would use his body to carry around a part of me for the next 30-40 years is amazing. Plus the idea that my kidney could still be flushing beer long after I'm gone brings a smile to my face.
                          Last edited by dadmo; 03-05-06, 01:01 PM.
                          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


                          • #14
                            Originally posted by Don
                            Though I haven't been in control of my situation since I was diagnosed in Sept 04, I always felt like I knew all the answers and knew what was going to happen...
                            Ann Landers had it right when she said, "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
                            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


                            • #15
                              I am so sorry to hear the news. We will keep you in our prayers.

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