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  • Sutent didnt work.....

    well everyone... for those following myself and sutent, it did not work for my pathology or something went really wrong. In the 2 weeks off sutent my BHCG went from 2000 to 23000 then 4 days later it was at 43000, but my AFP is normal. So, i'm no longer going to Russia and Africa to climb, i'm heading in for my first ever BEP cycle on monday July 30th (my 10th Chemo so far) so this should be a bundle of fun! Although i've heard BEP's are vastly easier than VeIP and VIP cycles. Well take care everyone! I'll give an update on the difference between cycles when I can stare at a computer monitor again!

    P.S.... It sucks that I no longer have a Central line! Back to good old fashioned IV's for everything

  • #2
    I'm sorry to hear the news. Good luck with the start of BEP and keep us posted. we are thinking of you!
    Lori and Jon
    Diagnosed 5/22/2006
    I/O 5/26/2006, Stage 3, Good
    Teratoma (Majority), Seminoma (10%), Yolk Sac
    3xEP then determined not working
    HDC w/stem cell transplant 8/16/06 to 9/25/06
    Chest and Neck surgery 10/9/06 - immature teratoma
    RPLND 11/16/06 - immature Teratoma
    2/29/2008 - markers continue to be normal!
    9/16/2008 - released from Dr. Einhorn's care

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    • #3
      NS8000:
      Well that stinks. Where are you beinmg treated? Don't forget that I'm counting on your help to get my old busted self up Mt. Rainier.
      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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      • #4
        i've had all 10 treatments and all the other fun and games done at the Tom Baker Cancer Center, in Calgary, Alberta, Canada. (Also known as the Foothills Hosptial). I call it my place of work

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        • #5
          Calling it work doesn't do justice to how difficult treatment can be. It's more like a week of hard labor with two off for good behavior times how every many cycles.
          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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          • #6
            NS8000,
            I'm sorry to hear that about Sutent...and the postponed climbs. Please keep us posted on the BEP. You are one tough fighter and we're pulling for you all the way!!!
            Hugs,
            Karen
            Last edited by Karen; 07-24-07, 10:12 PM.
            Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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            • #7
              Hang in there. I'd also suggest joining the TC-NET mailing list for additional support in your fight.
              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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              • #8
                That Mountain

                Is right there....waiting to be scaled by a cancer free you!

                I almost (almost!) feel sorry for that cancer that dares to invade you. It doesn't know what it's in for.

                Commit, Endure, Survive!!
                Stage III Non-Seminoma- 7/11/06
                Right I/O 7/12/06
                Completed 4x BEP 11/06
                Bi-Lateral RPLND (Dr. Shenifeld)- 11/27/06
                Surveillance since then

                When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
                Lance Armstrong.

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                • #9
                  Hey Man,
                  It's a damned shame that sutent didn't do the trick. Has there been any monitoring other than HCG levels to see where the beast is located? You have been through a lot, and yet I can still feel you strength through your posts. Best of luck with the BEP. You have a huge family here waiting for you to make this next climb.
                  "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.

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                  • #10
                    Tough news.
                    Keep us posted on your BEP protocal.
                    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

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                    • #11
                      Very sorry to hear.

                      Hallo Nikki,

                      It really sucks what has happened, I looked at your website last week to see if there was anything on your trip. I saw everything was organized to go.

                      On your previous message you indicated that your dr's though your CT showed bleeding of the tumor cells (while on sutent).
                      Was that an incorrect conclusion?
                      Was the fast rising HCG the only reason to stop with your sutent trial?

                      I really hope that you will do better on the BEP.

                      >P.S.... It sucks that I no longer have a Central line!
                      >Back to good old fashioned IV's for everything.

                      They can always put in a new one if you insist.
                      But the old fashioned IV's have the advantage of not having a risk of creating serious troubles. (infection, blood clots etc.)

                      Regards
                      David

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                      • #12
                        Nikki,

                        Very sorry to hear about this. I am wishing you better progress and success on BEP.

                        dbo, I sent you a private message regarding the study that Danny is currently on at Sloan-Kettering. You might qualify for this. Nikki, this might be something that you want to look into as well.

                        Here is the link to the clinical trial.

                        Search our database of clinical trials at Memorial Sloan Kettering Cancer Center that are currently enrolling new participants.


                        Wishing you well,
                        Michael

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                        • #13
                          I'm so sorry to hear about the sutent and your delayed plans.

                          Good luck with the BEP, I hope it goes easily for you.
                          Rob and Stacy
                          DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9

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                          • #14
                            Thanks for the support everyone!!!!

                            In regards to figuring out what went wrong. The BEP is just to make sure that nothing major is going wrong in reference to the cancer in my body. In the wait period after they will try to figure out what happened. The current best idea floating around with the doctors is that the Sutent demolished all the tumors but left behind the germ cells. I've got no idea what exactly this means, but it apparently is positive and negative. Another leading argument is that the mass breakup of my tumors in my lungs has artificially increased the BHCG levels in my system. I got to mention, i'm no doctor and dont pretend to be one! And of course, the bad idea argument is that sutent did not do anything in anyway to the cancer cells. Guess only time will tell!

                            Thanks agian!

                            Niki

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                            • #15
                              Originally posted by NS8000
                              The current best idea floating around with the doctors is that the Sutent demolished all the tumors but left behind the germ cells.
                              This argument is perfectly reasonable. Germ cells are very undifferentiated, so it is likely that they don't produce the tyrosine kinase Sutent is meant to target. The good thing is that you hit the cells that have "evolved" and spread out; the bad thing is that you may be leaving behind the cells that caused this chaos to begin with. The only problem with this argument is that it will be difficult to prove unless you actually do cell-based work on this in the lab.

                              Originally posted by NS8000
                              Another leading argument is that the mass breakup of my tumors in my lungs has artificially increased the BHCG levels in my system.
                              That is also possible, and this argument can be verified by bloodwork: if the bHCG levels go down in accordance to their half-life, then this hypothesis will hold.

                              If anything, the BEP combo is less specific than Sutent, so everything will take a hit. In essence, you're covering more space here, so if, in fact, germ cells were left behind, BEP should do the trick.

                              Hope this helps clear things up.
                              "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.

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