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The Complete Story

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  • The Complete Story

    My best friend was diagnosed with stage 3C TC in September of 0'5.When he was first examined,he was "weeks away from death".They performed his right I/O September 6th,3 days after the diagnosis.He was found to have lymphatic invasion and distant metaphasis to the liver and lungs.They started him on 4xBEP immediately.At first everything looked promising.His beta HCG levels dropped from 363,000+ to 30,000 after his third treatment.However,in between cycles 3 and 4 his counts rose to 70,000.He started salvage chemotherapy next,called TICE(Taxol,Ifosfamide,Carboplatin,and Etoposide) with 1 autologuous Stem Cell Transplant.This worked the best out of all his treatments,HCG levels dropped to its lowest points of 8,000 HCG.It just wasnt meant to be.His counts shot up to 56,000+ in 5 days.They immediately discontinued the GCSF.Next up was Oxaliplatin and Gemzar,which showed some promise,and also severe side effects.For a few weeks while on it,he showed stable disease with little progression until the end of the second week.The numbers shot back up.Next up,was oral etoposide,which he took for roughly 3 weeks,which made him vomit constantly and feel light-headed with no effect on the disease.No need for that,at this point everyone agreed.In the beginning of April or end of March,we all went back to Sloan to speak to the doctors there,and they agreed on giving BMS-247550 a try,a taxol derivative that showed some hope for him especially because at one point his tumor was Taxol sensitive.Before starting he had to be weened off the oral VP-16 for at least one week.In this period,a huge abdominal tumor perforated a hole in his stomach causing internal bleeding,and one of the criteria for BMS was no internal hemmoraging.So he went back to Yale and was given 14 gamma ray radiation treatments in an attempt to stop the bleeding,shrink the tumor,so he could go for the chemo.Again,it wasnt meant to be.He was placed on a morphine pump for roughly the last two weeks,and in the past day and a half everything took a turn for the worse.He compensated,and compensated,and finally gave out.He died this morning at the age of 19 at Yale New Haven Hospital,close to home with friends and family by his side.He exhausted every treatment option possible,but the what-ifs are the worst part of it.If he was diagnosed earlier,he would still be alive.If he responded,and wasnt refractory,it would be the same.His tumor components were Yolk Sac,Teratoma,and Seminoma.He was just such an advanced case.He will be sorely missed.I will continue to post here when i see a subject i can be of some help on,but i just wanted to thank you all,especially Scott,Dadmo,and Danebert.Again,thank you for all the info.

  • #2
    I am so sorry to read your post. What a valiant warrior he was and what a wonderful friend you were to him. We have certainly learned these last few months that although TC has a high cure rate, there are those who either are diagnosed late or who do not respond to treatment. Unfortunately, your friend was in both categories. It is very hard to lose a good friend. My heart goes out to you and his family. 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


    • #3
      Another sad day with a disease that is supposed to be so curable. I’m sure you presence was a great comfort to both your friend and his family. I’m sorry for you pain that I know you are going through. Thank you for posting on the forum and I look forward seeing you share your story with other in need. Again thank you and I’m sorry.
      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.


      • #4
        I am sorry for your loss. He was lucky to have a friend like you who spent as much time as you did researching all of his options and offering constant support. Sometimes modern medicine cant cure you physically, but I don't think there is ever a point when you can't comfort and support somebody mentally. I think you suceeded in this crucial role to your friend. Its always disheartning to hear of the loss of somebody so young with a disease so curable. However, thanks to men like him who participate in clinical trials, new drugs will be tested and one day those very drugs will save a life.


        • #5
          Derek, My condolences go to you. You´re such a brave and wonderful friend. Take care.


          • #6
            Derek, I'm so sorry to hear this. Sounds like it was a very complicated case and he certainly gave it his all. Its so nice that you were there for him and that you have posted on this site to try and help others... that really means a lot. I wish you and his family the best.

            Diagnosed 10/03/03
            I/O 10/15/03
            RPLND 1/21/04
            Completed the Boston Marathon 4/19/05
            Completed the Boston Marathon 4/17/06
            Baby Riley born on 3/29/09

            2012 Livestrong Challenge Web page


            • #7
              I'm very sorry to hear this news. He put up a good fight.
              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!


              • #8
                Derek, I am so sorry for your loss. You were indeed a GREAT friend. At 19 years old and to lose your life to cancer it's so hard to take. My thoughts and prayers are with you.
                Mother of TC survivor.
                Son, Josh 20, diagnosed Jan. 24, 2005. Left Orchiechtomy Jan.31, 2005. 4XBPE March 7th to May 28th 2005.


                • #9
                  What a true friend you were for him. We all should hope for such strong bonds with our friends as you two had. God bless you and his family. Remember him always.


                  • #10
                    I am so sorry to hear this news...our thoughts and prayer all involved!!!!!
                    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--


                    • #11

                      hmmm...when I'm thinking that the first urologist told me "NOTHING WORRY ABOUT!!" (and I where in stage III)...only my intuition and perseverence have saved me. Please, be strong.
                      Stage III EC 85% + Sem 15%
                      AFP=2.6; HCG=10, 20,28 and rising
                      FULL CAT scan:
                      -abdominal lymph clear
                      -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
                      4 x BEP changed to 3 x BEP at my request
                      from 2005-05....Surveillance


                      • #12

                        I'm so sorry. You were a great friend and I'm sure a great source of comfort.
                        Be strong,

                        Right I/O 4/22/1988
                        RPLND 6/20/1988
                        Left I/O 9/17/2003

                        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.


                        • #13


                          I've been reading your posts consistently, waiting - hoping - for a miracle.

                          The miracle didn't happen... but maybe it did. I don't know what happened during his journey. However... I am sorry that he's gone. I truly am.

                          Thank you for your posts, and for hanging around here.


                          Diagnosed TC 3rd Sep 2005
                          Right I/O 6th Sep 2005
                          10% carcinoma, 5% seminoma, 50% mature teratoma, 35% Yolk-sac tumor
                          AFP: 20 Oct 05: 3; 9 Dec 05: 4; 12 Jan 06: 6
                          CT scan: nodes adjacent left renal hilum, 6/7 mm (Sept 05)


                          • #14
                            if one thing positive came from this, is that many more people are vigilant about TC because of your friends great loss. knowledge is great!! i mourn with you today and in the days to come. Thanks for being there for your friend. I know he appreciated it, we all do. give our love and prayers to his family because we know that the fight will continue because of him. my thoughts and prayers are with you,brian.
                            diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008


                            • #15
                              thanks everyone