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Its been fun while it lasted.....

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  • Its been fun while it lasted.....

    Well, finally meet with my doctor about everything relating to my massive problem. She figures my cancer has altered and become highly aggressive. The BEP cycle I just had did nothing to the cancer in my body to any extent, it only stopped it in its tracks for a little while. Tumor markers stayed identical to the day I went in for the BEP, 56,xxx. Highly amusing that it did not go up or down. The CT from wednesday showed that the old tumors all disappeared and that there are about an equivalent amount that replaced them that appeared.

    So, there's not much of a game plan now in treatment. It comes down to i'll never be cured of cancer and the question is how long i'll last. The only idea is to extend every chemotherapy break as long as possible, wait for my bHCG counts to raise then bring me in for a treatment. The next one will be a BEP again, then they will move to gem - ox. I'll be tested again on friday next week to see if the counts raise. And to do this as long as my bone marrow can withstand it. She also said i'm free to take whatever natural things I wish to because most will not do anything to the chemotherapy.

  • #2
    Oh no!! I hae reading this and I hate even more that you had to hear this news. You deserve a cure and I wish I could do something to help. Praying for you!!
    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


    • #3
      I'm sorry to hear this too, and wish I could do something to stop cancer from spreading.
      Prayers going out to you-

      Tammy & Anthony

      Son Anthony DX 12/11/06
      L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
      4XEP 1/29-4/6/ 07
      AFP started increasing3 wks later
      Residual abdominal mass found on CT
      RPLND 6/8/07
      Cancer in pathology-
      80% mature teratoma, 20% Yolk Sac. --
      No adjuvent chemo and
      AFP normalised

      July 22, 2010 ---- 3 years all clear!


      • #4
        Hi Niki: I'm so very sorry to hear this...don't give up. There's gotta be something more. I truly believe this for you.
        *Hubby Andy diagnosed 02/13/07, Left IO 02/16/07 *Stage 1A Non-Seminoma (65% Immature Teratoma / 35% Embryonal Carcinoma) *RPLND 04/27/07 Lymph Nodes-ALL CLEAR
        *Complications from Chylous Ascites so Laparotomy 05/03/07 *No food for 10 weeks, TPN only *07/18/07 Removed drains, tubes, picc line *CT Scan 07/31/07-ALL CLEAR
        *CT Scan 02/12/08-ALL CLEAR *Hydrocele surgery 06/19/08 *CT Scan 9/30/08 and 03/06/09 shows <cm left lung nodule - under surveillance


        • #5
          Hi Niki -

          I am also very sorry to hear of the news you've gotten. Find yourself a really good naturopath and use their services in conjunction with what western medicine has to offer next. Natural medicine can be very instrumental in helping.

          Fingers crossed 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


          • #6
            Hi Niki,
            Just catching up on your posts and am sorry to read about your meeting with the onc. You seem like you ask the questions, get the answers and take the next step with a positive attitude. I'm reading the book "Deep Survival" by Laurence Gonzales and it has made me think of you a number of times. Your climbing the mother of all mountains now, and I have faith that you will go about this as you do your other climbs. You are a proven Survivor. Let us know how the last count looks and if you're looking at other treatments. Keep your strength, fight and attitude dearest Niki.
            Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


            • #7
              I read you rpost and I had some questions.

              What treatment options have you done? Have you consulted with Dr Einhorn?

              There is another chemo out ther you might want to try but depends on what you've been on. Also, it's a personal decision too.

              Wife of Kevin Murphy
              Diagnosed 7/16/04 100% Choriocarcinoma
              Oriechtomy 7/20/04
              4xBEP 8/04-11/04 BHCG:1200 (lung only)
              Rediagnosed 12/27/04 BHCG: 50
              1xVIP 1/05 (lung)
              HDC/Stem cell Indiana 2/05-4/05 BHCG: 51-4.5 (lung)
              HDC failure 5/05
              3xGemzar/Taxol 6/05-9/05 (lung only)
              VP-16 w/Avastin 9/05-1/06 (lung only)
              Cyberknife 5" lung tumor 2/06
              cyberknife 6 brain tumors 3/06
              1xOxaliplatnin 3/06 (liver, lungs, kidneys, left hip)
              Passed away 4/13/2006


              • #8

                I am so sorry you have gotten this news. I highly suggest you contact Dr. Einhorn at Indiana. His nurse to speak with is Jackie. The fact that your HCG hasn't moved might be something worth some hope and a phone call.

                All my best,


                • #9
                  Sincee Niki may not log in right away I though I'd direct everyone to his first post which details the treatments. Niki was also on Sutent for a while, but treatment was discontinued. Please look at his posts and hopefully someone here has information to share and help.

                  A social spot for testicular cancer survivors to meet friends and make new ones. New members can introduce themselves here. Chat about testicular cancer or anything else!

                  Sorry to momentarily hijack your thread, but some here are searching for trials and perhaps connections can be made to find another direction for treatment.
                  Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


                  • #10
                    What a difficult situation, I am so sad to hear this news. I agree with the Naturopath...not to say that you should stop the work elsewhere. Huge studies are being done outside of traditional medicine that are finding new and promising information. Many studies are pointing toward certain vitamin deficiencies consistant with certain cancers. No one knows for sure, but the efforts are worth the try. We have opened everydoor for Russell and have not been sorry at all. Some interesting studies on the Oxford Journals site. Lovestrong, Sharon
                    Click here to support my LIVESTRONG Challenge with Team LOVEstrong.


                    • #11
                      I just went back and read through all your posts and wanted to chime in, for what it's worth. Do what dannysmom said and consult Dr. Einhorn, ASAP. He is an expert on this subject and might have some valuable insight, so do not abandon all hope. I'm sorry that your struggle has been such a difficult one. Hang in there, and I pray that you get better.