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Started Sutent!

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  • #16
    Well another 2 weeks down in the study, and my first cycle is coming to a close. Unfortunately my bHCG is up again at 2300 (which is still very low considering I have not had active treatment in over 11 weeks. And the final verdict on this first cycle will occur on friday when I have a full CT scan again (13th of the year!).

    As for myself at high altitude, I will be finding out very soon! On July 28th I leave for Mt. Elbrus in Russia and Mt. Kilimanjaro in Tanzania getting back August 21st. Prior to this I got the full go ahead from my three doctors as well as my clinical research specialists who have some of the most interaction with Sutent. I've got a whole lot of people very curious to see what the high altitude will do to me, as i'm one of the only people ever to try these sorts of things with highly monitored active cancer. One way or another, this trip is going to be a whole lot of fun!


    • #17

      You are an inspiration! Kilimanjaro!! wow.

      I've been thinking about you and hoping you were having success in this study. Still sounds like there could be potential and great promise... The CT scans will certainly show the progress. It's very easy to get hung up on your HGC level. It is generally a good indicator, but it only tells part of the story. Danny's HCG has dropped at first and then slowly has risen throughout Flavopuridol, yet the great majority of tumors have shrunk substantially throughout the study when looked at with a CT scan.

      Wishing you well and thinking good things,


      • #18
        Sounds like a fantastic trip! I want to see a pic of you on your climbs. I have a fear-of-heights thing so must live vicariously through you on this! Fingers crossed for your CT this Friday...please keep us posted.
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


        • #19
          Well one full cycle down of sutent and i've now got the major results from the CT scan. At the beginning of the week the doctors believed that most of the tumors were shrinking but there was more spreading in the lungs. However upon further investigation into what is happening, it turns out the best thing that could happen in fact did. The tumors are in fact bleeding and dying, which is a very good sign. I am in my two week break right now before i go for another 28 days on sutent and this is when we will see the major effects going to work as it has fully built up in my system.

          On the side, I am in fact going on a climb to Mt. Elbrus and Mt. Kilimanjaro back to back starting on the 28th, so I am super excited for it! We will then find out what high altitude does to the lungs on sutent which should be very interesting for all the clinical research people following me.


          • #20
            WOW!!!! What good news!! How do you feel? Any other side effects besides the gluten sensitivity and sunlight sensitivity? How is the HCG?

            You may not be a pioneer to climb those mountains, but you are a pioneer on this climb and we are watching you and will cheer you at the summit!!!!!
            Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


            • #21
              This is fantastic! I'm sure you have been documenting everything that has been going on; it will come in handy to everyone studying the effects of kinase inhibitors on cancer.

              Your efforts with the trial have great impact, and they validate over and over the importance of research into this area. Without people like you, our work would have no purpose.

              Niki, thank you for what you are doing.
              "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.


              • #22
                I'm thrilled to hear you're getting good results, and climbing mountains to boot! I hope we'll get to hear all about your trip.
                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!


                • #23


                  I am ecstatic to hear about this news! Just fantastic.

                  Beat the hell out of it, man! I believe in this treatment.



                  • #24

                    congrats on the good progress so far!

                    can someone tell me what sutant is? is it a new experimental drug?
                    it sounds like it works great!

                    Best to all-
                    Fiance Brian, dx:stage IIIC non-sem 4/18/07
                    mets to lungs,liver,abdomin,large tumor near kidney
                    hcg was 176,000!
                    completed 1 rnd of TIP(had bad reaction to taxol)
                    BEPx3 until 7/13/07
                    7/26/07 post chemo ct-scan shwd shrinkage & fewer lung tumors
                    10/17/07 @ MSKCC Liver FREE of cancer! necrotic & small focus of teratoma.
                    AFP & HCG normal
                    12/7/07 RPLND,right orchiectomy @ MSKCC
                    12/18/07, rcvd pathology,all clear! no cancer!
                    2/11/08 -Lung surgery dne @ MSKCC
                    ALL CLEAR