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The good, bad and ugly

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  • The good, bad and ugly

    Here is an update for anyone who remembers me. I've poked in and out of this site for a couple of years now. My husband was diagnosed with pure seminoma TC in Jan 05 and I squatted and watched then I posted here and there and had lots of questions.
    This place has been a point of strength for me and I don't want to take that from anyone. I just want to say that there are still those 5% to 10% who don't make it through, even after the chemo, HDC/BMT more chemo...where do those survivors go? I mean the facts are that most men with TC will survive and live (relatively) normal lives.
    I want eveyone to understand that the comments of "if you HAVE to have cancer, this is the one to have" or "virtually curable" and the one I particularily took dislike to "well, at least it isn't..." are no more comforting to any of us whether it be in stage I or reacurrance.
    Larry is still hanging in here with us and you would not believe the strength of this man. Seriously, he is no less than a hero in my book.
    He was in remission for approx 11 mos after HDC/BMT and did some Taxol and Gemzar in March and is now doing Cisplatin and Eurobo...something cyn. I'm not in favor of remembering all the chemo drugs he's endured.
    We are having a scan on the 30th, next monday. We don't see the Dr. until Aug 6th and Larry has asked me to not call for the results, he want's to wait until the 6th. If the news is that this chemo is actually stopping the tumors from growing, we will most likely continue on with this treatment for the last two rounds. I will try to post again during that week. Why continue??? The hope of a remission, regression or more time.
    As a lengthy battle with cancer has battled the finances as well I am unable to get "on-line" very much.
    I guess I just wanted to say that TC may not be the worst cancer to many, but if you are in the 5% to 10% who are not cured, it is the very worst.

    If you are interested in receiving updates on Larry's condition you are welcome to private message me and give me your e-mail address. I will e-mail out updates even when I cant get on the "web".

  • #2
    Send me your # in a PM

    Patti,
    Send me a PM (TCLEFT) and we'll talk. The monster came back two more times in me. In remission now but not free and don't think I'll ever be (always on my mind).
    Mark
    I Love My Pack!

    sigpic

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    • #3
      Patti,
      You're not forgotten but we all understand how important it is to get away for a while. You're certainly correct about the devistaion of this and all cancers. For those who can't be cured the statistics are meaningless and on our forum the past 6 months have really been tough especially sinse it's "so curable". Please keep us update.
      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
        Patti, I am new here but I wanted to say that I am really sorry about the struggles that you and your dear hubby have had to face. I will pray for great news for you both.
        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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        • #5
          Patti,
          I will put you and Larry in my prayers. Please keep us posted.
          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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          • #6
            Patti, we have never forgotten you and Larry's challenges. I pray for good results on his upcoming CT scan. 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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            • #7
              Thank you

              Thank you all very much. I wish I could post more often. I don't have WEB access except at very limited times. I'll do my best at posting here. Thanks for all your support.

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              • #8
                I too have been checking in on occasion, and wanted to give you and your husband my support. I also have 100% Seminoma, DX in June 2007 and have been undergoing R.T. for a week now. The typical "at-least it is TC" and as the Dr.'s put it "very high cure rate" still does not put me at ease much. I've watched close family members pass after the "85% cure rate" and am sick of the statistics. Numbers do not mean much when you are up half the night with the stomach cramps and nausea. This disease sucks no matter what type it is. I think that living each day as it comes is better than stressing over statistics. Cancer is so unpredictable. Sorry if I'm venting,; your first post just hit a nerve I guess. Keep the faith and know that you and your husband are not alone in the fight.....
                Chris

                Diagnosed 6/11/2007
                L. Orchiectomy
                Stage 1 100% Seminoma
                17 sessions R.T. finished 8/15/07

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                • #9
                  I will be praying for you and your family and to all the people in this forum that are affected by this disease.
                  Pure embryonal Carcinoma, orchietomy, rplnd, X-ray/blood markers every 3 months.
                  Pray, Hope and Don't worry.

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                  • #10
                    The Results are in

                    Larry's scan results show that the cancer continues to spread and grow. Our next step is to go to some research place in San Antonio TX. We fly down there on Monday and have a consultation with a Dr. there. I'll call her Dr. P for now. Hopefully there will be more posts with reference to her.
                    We are to see what, if anything that Larry qualifies for. At this point in time our goal to have Larry here for the holidays.
                    It was explained to us that there was a 99% chance it wouldn't help...but Larry said "there is a 1% chance it might". Upon the completion of this study we will return to our home town and discuss Hospice.
                    So I'm saying to myself, this could give him two or more months beyond what he would have if he did nothing??? Then I say "wonder how many months he'll have to be so far from the family while he is taking this treatment that will most likely not do anything for him. Then I hear it loud and clear in my head...it's Larry saying to me "I don't want to die, I'm too young and I don't want to die"
                    That's one thing Larry isn't and that is a quitter. He's strong and he's proud, but he still has cancer.
                    I wish I had better news to report. I'll try to come back on here one day next week. It helps me understand my feelings and to see that I am not alone in this big scary place.
                    Thank you all so much.

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                    • #11
                      Patti,
                      Did you get any help from Sloan Kettering? Are you and the kids alright? Please, let me know if I can help in any way.
                      Mark
                      I Love My Pack!

                      sigpic

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                      • #12
                        Now vs. Later

                        Well, I personally haven't been in contact w/Sloan; however, I had asked someone that was more versed in medical language to help me there. It didn't look like it was something that Larry would be able to do. There are certain qualifiers and once a BMT is done, you qualify for less...etc.
                        This place in TX isn't a 100% thing, but they are at least willing to see him. Thank goodness I work for an airline company.
                        The kids are trying to not think about it, and Larry and I are trying to "pretend" we're not thinking about it.
                        Wish I could stay longer on here. I've got to get home now.
                        Talk to you all soon.

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                        • #13
                          I hate this *&&*&&^%&^%$+_)+_(&*&^(**&% Disease!!!!
                          I Love My Pack!

                          sigpic

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                          • #14
                            I couldn't have put it better myself! I'll try to post on here any information we get.
                            I have wondered lately...to know you will die or to know you'll have to live with the worry of the cancer returning for the rest of your life...which is actually worse?
                            The agony of it all......

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                            • #15
                              Patti,
                              I am sorry to hear this, and you are definatley not alone in a big scary place, although I feel helpless to make it less scary.
                              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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