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  • Another Update on my brother

    Hi all,
    My brother, Gerrard, finished his first round of HDC and had a very hairy ride with it.....he was due to start his next round next week but his ct scan showed 3 new spots on his lungs and his doc said that if his blood results show tomorrow that his hcg is rising then they will not proceed with the next round....

    Does anybody know what they do next? Where I can look for trials? Please help because I am sooo scared that there is nothing more they can do for him......

    Thanx again
    Jenny

  • #2
    Jenny,

    I am so sorry. Robert is a great source of help and maybe he can help you figure out where to look for a trial. We have a friend who is at SK that is invloved with many trials and they are testing out some new treatments with him. I will try and get some information about these treatments.

    Thinking of you.

    Margaret
    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


    • #3
      I just did a quick search of the Sloan web site and they don't have any ongoing trial for testicular cancer. However in your situation it wouldn't hurt to call either Sloan or IU.

      Robert:
      You seem to be a master at digging out help in these areas. This is the stuff we love you for.
      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.

      Comment


      • #4
        Jenny,
        I'm so sorry to hear this. I agree with Bill (Dadmo) to call Sloan or IU. You're in my thoughts and prayers, as is your brother.
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

        Comment


        • #5
          Double check Sloan for Trials

          I met a friend there in December and he is platinum resistent. He is currently undergoing an exp. treatment program there.
          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.

          Comment


          • #6
            Originally posted by boyce
            I met a friend there in December and he is platinum resistent. He is currently undergoing an exp. treatment program there.
            Boyce, call Michael and ask what treatment trial Danny is on...and where the trial is taking place.

            Thanks honey
            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


            • #7
              Hey Jenny,
              I'm sorry to hear about your brother's ordeal. If his markers are going up despite the HDC, then he may be chemorefractory. You should follow Boyce's lead on the Sloan trials, and Robert's help will certainly come in handy.
              "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.

              Comment


              • #8
                Jenny:
                Again to all who post here. I live less then an hour from Sloan. Any and all guests are welcome, remember were family. The last thing you need to worry about is a place to stay.
                Last edited by dadmo; 05-23-07, 08:25 PM.
                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.

                Comment


                • #9
                  Thankyou all for your support,

                  Gerrard's markers have gone up from 200 to 2900....Australia seems so behind in clinical trials....we don't have any trials any where in the country on Testicular cancer....How can that be? Sorry but at the moment my heart is breaking, I don't know if i can go thru this again and I've got absolutely no idea what to say to my brother for the first time.....

                  Jenny

                  Comment


                  • #10
                    Originally posted by jennys
                    Thankyou all for your support,

                    Gerrard's markers have gone up from 200 to 2900....Australia seems so behind in clinical trials....we don't have any trials any where in the country on Testicular cancer....How can that be? Sorry but at the moment my heart is breaking, I don't know if i can go thru this again and I've got absolutely no idea what to say to my brother for the first time.....

                    Jenny
                    I am so sorry Jenny. I wish I knew what to say to do or help. I will try and get the information from our friend that is in a trial now, and pass that along to you. If you don't know what to say to your brother when you see him....just hug him and tell him you love him, you can never go wrong with that.

                    If you think of something all of us can do to help, please let me know.

                    Margaret
                    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


                    • #11
                      Originally posted by boyce
                      I met a friend there in December and he is platinum resistent. He is currently undergoing an exp. treatment program there.
                      Called Sloan Kettering this morning in regards to our friend Danny's trial. He is in a current trial through SK but it has already begun so your brother would have to get on board on the next one.

                      I have the number to call if you would like to find out more information. 1-646-227-9068

                      They have done wonders for our friend Danny who is beating all the odds. I really hope this helps and if I can do anything else, please let me know.

                      Margaret
                      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
                        First of the rank....Thanx Dadmo for your offer of someone to stay....that is truly genorous and I might just take you up on that offer!!

                        Secondly...Thankyou Margeret for your support and information....I am so glad that I ever stumbled onto this sight...it has been a godsend of information and support....Margaret, is that number for Sloan Kettering....is there anybody in particular that the onc should speak to?

                        Thirdly and most gratefully...Robert, Thankyou, Thankyou, Thankyou, I have sent you a pm and hopefully by Monday I will have the info you asked for.....

                        Thankyou all once again, I am truly grateful
                        Best wishes
                        Jenny

                        Comment


                        • #13
                          I've been riding my bike to work so we might even have an extra vehicle.
                          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.

                          Comment


                          • #14
                            My sons oncologist at Sloan was Robert Motzer, many others here have been seen by George Bosl. Here's a link
                            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.

                            Comment


                            • #15
                              Originally posted by jennys
                              First of the rank....Thanx Dadmo for your offer of someone to stay....that is truly genorous and I might just take you up on that offer!!

                              Secondly...Thankyou Margeret for your support and information....I am so glad that I ever stumbled onto this sight...it has been a godsend of information and support....Margaret, is that number for Sloan Kettering....is there anybody in particular that the onc should speak to?

                              Thirdly and most gratefully...Robert, Thankyou, Thankyou, Thankyou, I have sent you a pm and hopefully by Monday I will have the info you asked for.....

                              Thankyou all once again, I am truly grateful
                              Best wishes
                              Jenny
                              Robert and Dadmo are really something special. We are lucky to have this group. I was thinking the other day that there is not one single person here that would not take the shirt right off their backs for someone that needed it.

                              I have no name to offer just that number. (I wish I had more to offer you) That is the number that Dr. Sheinfeld's nurse gave me. I will also give you Dr. Sheinfeld's number, his assistant will answer, just ask to have one of his nurses call you. 646-422-4311. They have always been very helpful.

                              Best of luck and many prayers for your brother. He is one lucky guy to have you for a sister!
                              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

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