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  • Introduction

    Hi!
    I am a TC survivor x2.
    I'm 30 y.o. live in Toronto, have a wonderful wife, no kids. I joined this forum to exchange information and experinces with people who have to deal with similar issues. I think I found the right place.

    In June 1998 I was diagnosed with Pathologic Non-Seminoma Stage I (AFP over 600, HCG over 100). I underwent right side Orchiectomy and got standard BEP after that. In September 1998 it was over. Markers dropped back to normal and no other complications. After that nothing happened until...
    In February 2006 I was diagnosed with Non-Seminoma Stage III (AFP 851, HCG 167) germ-cell tumor. Tumors present in abdomen and lungs. It was really scary, but I didn't know at the time that the worst was still ahead of me.
    After left side Orchiectomy i got 4 cycles of VIP. First cycle was the worst, really got me tired and i had alergic response to Stemetil - severe muscle spasms, I couldn't breath and it was awful. I started to use marijuana right from the start of VIP and reduced anti-nausea drugs to Kytril. I only used high quality organic medicinal marijuana. I didn't really smoke it. I vaporized it at home and ate it in cookies, cakes, and granola bars while in the hospital. It allowed me to eat and sleep normally, reduced pain, and i didn't know what nausea was. Never had any. Also I was high pretty much all the time and it felt awesome. All the doctors involved were aware of it - they had nothing against (Note that medicinal use of marijuana in Canada is legal). Each cycle of chemo I did as in-patient for 5 days. Then 3 weeks at home and back to hospital for another 5 days of chemo. After all that was over (May 2006) there was still some small masses left in the abdomen and chest but markers were normal. I went back to work. Started resuming normal life. Doctors said that those masses are small and it could be just some scar tissue but they needed to make sure. In July I underwent Retroperitoneal Lymph Node Dissection (Doctors removed 17 nodes, but they managed to preserve all the nerves, they also found non-sematoma yolk-sac tumor there and took it out). Surgery was performed by Dr. Michael Jewett.
    That was the worst thing they did to me so far. Pain and this huge incision on my stomach. It took me 6 weeks to get back in shape. In August everything looked pretty good. There was still something small in my lungs but markers were normal. Doctors told me that they would monitor those masses in my chest saying again that it culd be just some scar tissue.
    In the end of August I went with my wife to Cuba for some vacation which we desperately needed. A day before we went I did blood test and x-ray. We came back home after a week all happy and relieved, I grew new hair and it was all curly and dark (straight blonde before chemo). Cuba was great too. At home we checked messages on our answer-machine - there were 3 messages from my oncologist. We needed to see him immediately.
    Next day, instead of my big return to work, i went to see Dr. Malcolm Moore - my Oncologist at Princess Margaret Hospital in Toronto. Remember ? I did tests just before leaving to Cuba. Results were bad. Markers went up, masses in my chest started to grow, there was also a new lump somewhere between my lungs. Dr. Moore said that the next thing to do is HDC with tandem Indiana-Style stem-cell transplant. He said that they were just starting to use this method and I would be the first patient to try it (Yay! Lucky me!). Until now they only did HDC with single transplant. He told me about what was involved and we started the process. First, collecting stem-cells. On september 22 - day of my birth - I received immobilizing chemo - this one made me feel really sick for a day - and started Nupogen injections for 10 days. After that I went for stem-cell collection. They managed to collect all they needed for double transplant. It took 2 days (about 5-6 hours each day). Everything was ready. All the tests results were good, Hickman's Line installed - I was a candidate for tandem transplant.
    It was already middle of October. I started my first HDC and transplant. It was really hard. Hallucinations, infections, fewer, i was delirious for 2 weeks. Went crazy - didn't know where I was or why, tried to rip out my Hickman's Line a few times, leave the hospital. Nightmare - I don't remember almost any of it but my wife told me some stories - she was there with me all the time.
    I spent total 3 weeks in the hospital and after all that was over and I came back to my senses I could not believe that I actually managed to survive it. First week after I "woke up" was hard. I was't able to speak or move too much. I was exhausted but there was no sign of metastasis anywhere in my body and markers were normal again. Now I had 4 weeks to recover and get ready for the next HDC and transplant. They gave me 4 weeks break because I had some serious obstruction in my stomach, they said that it almost killed me.
    4 weeks at home. In the first 2 weeks I had really hard time with my stomach. Wasn't able to eat much and when I ate I suffered. I walked every day, longer and longer distances. In the second week I was able to walk to the store and post-office. It felt really great.
    After I got my rest I went for 2nd HDC and transplant (another 3 weeks in the hospital). It was really hard, mostly because of hallucinations, paranoia, uncounciousness, and not being able to eat at all (to prevent any stomach problems). I lost 20 pounds. Because i couldn't eat marijuana-cakes they offered Nabilone - that worked fine. Can't remember much from 2nd transplant except for hallucinations. I could write a book talking only about those unbelievable visions I had, they were very intense and realistic and somehow I remember a lot of them with details. After 2,5 weeks I started to "wake up". No speech, no ability of walking or any movement for couple days but every next day was little better. They let me go home 2 days before christmas. I felt really happy. There was no sign of metastasis anywhere in my body, markers were normal. I spent next 2 months at home, ate good food, watched hundreds of movies, walked every day. In march 2007 I went back to work.
    Today I feel completely normal, considering all I went through. I have tingling (pins & needles) in both my feet and some hearing loss (I hear ringing noise all the time) but this is no big deal. I'm alive! My hair is straight again just different color - darker. New eyelashes and eyebrows are black (they were much lighter before) - actually this is a nice new feature.
    About 4 weeks ago my HCG went up - it was 3. 10 days later it was 4. A week later it was still 4. I did another test last week - it is 5 now. AFP and LDL are normal. I haven't smoked marijuana in 2 months but it is not important in my case since marijuana affects Testosterone production level and my body doesn't produce any (I use androGel). Anyway, my Testosterone level is normal, CT Scan shows no signs of metastasis. I am little worried. I don't want to go back. Doctors say that it could be nothing, but i can't stop thinking that the cancer could be back. I will have PET Scan done next week and we'll see. I stay strong and positive as always - I just don't know any other way.
    This whole situation gets me nervous. I already put the whole last year behind me and started my new life. I had job inerviews 2 weeks ago and last week. I'm starting to function normally and I wouldn't want it to stop suddenly. The hardest thing is to watch my wife really worried and suffering. She loves me so much. I don't want to see her like this again. I would like it to be REALLY over but I won't know until they do PET scan.
    This is my story so far.

    Cheers!
    Last edited by Adrr-Atta; 05-14-07, 11:00 AM.
    TC 1 - Jun/1998
    Pathologic Nonseminoma Stage I (AFP over 600, HCG over 100),
    Right Orchiectomy,
    4xBEP,
    Surveillance

    TC 2 - Feb/2006
    Nonseminoma Stage III (AFP 851, HCG 167),
    germ-cell (embryonal carcinoma, yolk sac carcinoma), tumors in abdomen and lungs,
    Left Orchiectomy,
    4xVIP,
    RPLND,
    Tandem HDC/Autologous HSCT,
    Surveillance (clear since Dec/2006)

  • #2
    Originally posted by Adrr-Atta
    Doctors say that it could be nothing,
    Adrr-Atta,
    You've got quite a story to tell.
    The line that stays with me is "Doctors say it could be nothing" referring to your recent HCG readings. I'm hoping they are right.
    Keep us posted, best of luck and give that wife of yours a big hug.
    Joe
    Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
    Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

    Please see a physician for medical advice!

    My 2013 LiveSTRONG Site
    The 2013 Already Balders

    Comment


    • #3
      Wow man, incredible story. Sound like you have been through a lot already; I really hope that when they do the PET scan, they find no trace of the beast. Experiences and stories like yours are wonderful contributions to this Forum, and I am glad you shared it with us. Best of luck,
      "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
      11.22.06 -Dx the day before Thanksgiving
      12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

      Comment


      • #4
        I hope the Docs. find it was nothing, that's a long journey you've taken my friend, you deserve good health.

        Comment


        • #5
          "We are not given the burdens we deserve, we are given the burdens we can bear."

          I like this quote, and I believe it "fits" on you and your wife perfectly. With all that you've gone through, you must be a strong couple.

          Waiting for the "all clear" response!

          Comment


          • #6
            You certainly have takent the long road to a cure. Keep us posted on that rising HCG and good luck.
            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
              Did bloodwork and PETscan yesterday. HCG is down to 4 now (it was 5 about 10 days ago).
              PETscan report will be ready later today.
              TC 1 - Jun/1998
              Pathologic Nonseminoma Stage I (AFP over 600, HCG over 100),
              Right Orchiectomy,
              4xBEP,
              Surveillance

              TC 2 - Feb/2006
              Nonseminoma Stage III (AFP 851, HCG 167),
              germ-cell (embryonal carcinoma, yolk sac carcinoma), tumors in abdomen and lungs,
              Left Orchiectomy,
              4xVIP,
              RPLND,
              Tandem HDC/Autologous HSCT,
              Surveillance (clear since Dec/2006)

              Comment


              • #8
                AFP and LDL are normal.
                PET scan - ALL CLEAR !!!

                I can finally start to breath normally.
                Last edited by Adrr-Atta; 05-03-07, 11:49 AM.
                TC 1 - Jun/1998
                Pathologic Nonseminoma Stage I (AFP over 600, HCG over 100),
                Right Orchiectomy,
                4xBEP,
                Surveillance

                TC 2 - Feb/2006
                Nonseminoma Stage III (AFP 851, HCG 167),
                germ-cell (embryonal carcinoma, yolk sac carcinoma), tumors in abdomen and lungs,
                Left Orchiectomy,
                4xVIP,
                RPLND,
                Tandem HDC/Autologous HSCT,
                Surveillance (clear since Dec/2006)

                Comment


                • #9
                  That's great news. Stick tight to that follow up schedule and enjoy a health rest of your life.
                  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


                  • #10
                    Very nice, dude! Congratulations!
                    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                    11.22.06 -Dx the day before Thanksgiving
                    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                    Comment


                    • #11
                      that's great to hear !!

                      Comment

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