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  • An update for everyone

    Well, it's been fun for the last while. The oral etoposide I took for the 2 weeks my bone marrow lasted for in combination with a huge load of naturopathy seems to have a very large effect on my cancer. My bHCG was 204,000 prior to this and 1 1/2 months later it's only 36,000. Still high but a massive improvement. However one of the biggest things it did was completely remove a tumor like mass on a lymph node on my cheek / jaw bone where it intersects in the muscle, unfortunately, in the last week it returned from being completely gone. On Oct 15, i'll probably take another 2-3 week duration of oral etoposide due to my bone marrow being very strong again. The naturopathy seems to be doing some good rather than destroying me like everything else! However on oct 18, i'll find out exactly what my lungs are doing and what the bump on my check really is (they been fighting for a while if it's a tumor or severely agitated lymph node) with another CT scan (around #14 or #15 in the last 2 years). I really wish they could just remove the one near my jawbone even with a elevated bHCG, it's rather annoying (but my doc says this is a very bad idea, however i could get radiation on it, but i'm not going for that since that area and the way they would do it could leave me without some major glands that are very needed for tasting food!).

    On another side of being a lab rat at the hospital, i've found another crazy trail to maybe try. It's called DCA (dichloroacetate) at the university of alberta where it just happens my girlfriend is doing her masters so i'm always up there anyways. I'd definately like to know if anyone else has heard of this as it seems to be a 'weird' way of doing things in terms of a new drug for cancer patients (although i'm a little paranoid after the sutent fiasco!). The weblink is http://www.depmed.ualberta.ca/dca/

    Well thanks for the positive vibes everyone! Take care!
    Last edited by NS8000; 10-11-07, 01:40 PM.

  • #2
    I am thinking of you and praying your treatment goes well!
    Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
    Current DVT
    Current testosterone replacement therapy, Testim.

    "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

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    • #3
      Glad to hear the numbers are going down!!! I poked around a little on the DCA and don't know if that's supported. The following gives a general overview : http://abcnews.go.com/Health/CancerP...2848454&page=2

      Please post back and let us know how the scan goes.
      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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      • #4
        Boy, you are one tough warrior fighting this battle. My bet is that you are going to WIN it! Hang in there. 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

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        • #5
          How's it going? What's the word on the dichloroacetate? It seems very promising. Sounds like the only reason it never went to clinical trials was that there is no patent and the drug is too cheap for anybody to make money on.

          Don't want to sound like a conspiracy theorist, but it sounds like something I'd want to try if I needed it.
          ---------------
          Left IO 4/21/05 | Seminoma Stage I |Blood markers normal before surgery | CT scan and xray normal.
          Final day of radiation was June 2, 2005 (15 days, 2500 cGy total). Anti-nausea drug of choice: Zofran.

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          • #6
            NS8000, I notice you stopped by a couple weeks ago, but your last post was in October. How is the journey treating you?
            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


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            • #7
              NS,
              I was wondering how you were doing and noticed your last log in was Dec 13. Did you try DCA?
              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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              • #8
                I'm very sorry to have to report that on Jan. 11th Niki lost his battle with testicular cancer. I was really hoping to climb Mt. Raineir with him someday. If I ever do get to make that climb I will certainly bring him along in my heart.
                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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                • #9
                  I'm so sorry to read this news, Bill. Niki was amazingly upbeat and straightforward about his cancer, and he refused to let it stand in his way.
                  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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                  • #10
                    I'm so sorry to read this - my heart goes to Niki's family and friends.
                    Manoj
                    09.29.07 - visit to ER with severe pain
                    10.08.07 - Dx with TC
                    10.10.07 - Rt I/O. Dx - 90% EC, 10 % yolk sac tumor, less than 1% immature teratoma & choriocarcinoma
                    11.21.07 - (day before Thanksgiving) NS RPLND @ MSKCC
                    11.28.07 - Return back home, recieve lab report. 86 lymph nodes removed - all clear. Begin Surveillance
                    04.10.08 - 2 cm nodule detected in lungs
                    04.28.08 - Starting 4XEP
                    07.03.08 - 4XEP complete
                    end-Sept - CT Scan scheduled

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                    • #11
                      Gosh, this is hard to hear. He was one tough cookie! I hope he is climbing the highest mountains of all.
                      Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                      Current DVT
                      Current testosterone replacement therapy, Testim.

                      "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                      Comment


                      • #12
                        I am saddened to learn of this news.
                        What a terrible loss.
                        RIP Niki.
                        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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                        • #13
                          I have seldom seen someone so driven as Niki. He never let anything, even cancer, stop him.

                          As some of you may remember, Niki was an avid mountain climber. He conquered many peaks, and very recently I bumped into his website (which has a nice title, I might add ), showcasing his phenomenal photography work alongside his climbing accomplishments.

                          Niki was always upbeat and always showed a great attitude. Rest in peace, Niki, and keep reaching for the summit.
                          "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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                          • #14
                            God has another Cancer Warrior in his Army. I pray that someday He will take no more.

                            Nikki, Thank you for showing us how to fight with courage, grace and dignity.

                            I hope your journey was peaceful.....rest well.
                            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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                            • #15
                              Farewell my friend, you've found a place in all our hearts. I visited Banff, the town where Niki lived, a few year ago - it was so beautiful and peaceful, nestled into the Canadian Rockies, I can understand why he lived there.
                              God speed Niki, my brave soul.
                              Last edited by Fish; 02-20-08, 01:44 PM.
                              Fish
                              TC1
                              Right I/O 4/22/1988
                              RPLND 6/20/1988
                              TC2
                              Left I/O 9/17/2003
                              Surveillance

                              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.

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