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  • #16
    Originally posted by Davepet View Post
    One question: What was the reason for the original ER visit? Assuming it was testicular discomfort, how long did it go on before you went?

    Low markers are good, but as you know, they do not rule out spread.That said, you probably caught it early this time, so there is a decent chance that surgery will be the end, if it is not, you will likely need one of the alternate chemo treatments, as there are lifetime limits on BEP. Also, a 2 day postponement is unlikely to make a difference in your stage. While theoretically possible, I wouldn't be concerned., you will most likely be the same stage on Monday that you were on Friday, whatever that was.

    There is a generic version on Androgel now that is a bit cheaper, I actually found it worked better for me. With the gels, you just need to wait a few hours before swimming & they will work fine, it gets absorbed into the lower skin layers by then & does it's job throughout the day. Pay no heed to the warnings about transference after the first few hours, it is boilerplate required by the lawyers, not an actual problem.Due to my insurance coverage, I moved to injections a few years ago ( they would only cover Testim, which I found unpleasant to use due to the odor). I feel the topical worked a bit better, but the injections are more convenient at one per 3 weeks. I learned how to do self injection so I don't need to set up an appointment every 3 weeks. It is easier than you'd think. In your case, I'd start with the androgel, (consider the generic "testosterone gel&quot & see how it works & decide from there.

    I'm glad your docs are on top of the trt. Mine were not, & believe me, I will never again laugh at jokes about hot flashes. Extremely uncomfortable, to be nice about it.

    Dave
    The ER visit was because I felt something not right with the survivor. We are all really hoping I did get it early but I have a feeling I’m not going to escape chemo.

    If I do become a stage 1 of some kind would it only be 1 round of chemo or possibly 3 again?

    Comment


    • #17
      At stage 1 surveillance should be an option, and one that I would recommend in your case. While you should get chemo if your case requires it, avoiding it if possible is probably a good idea.

      Dae
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

      Comment


      • #18
        So for now they gave me testosterone gel 1.62 (20.25mg per pump) and I’m supposed to apply 2 pumps in the morning.

        Surgery to remove is at 1pm tomorrow and I’m seriously considering telling him if a partial looks possible to do it. Will report back with everything when I recover. Thanks again to everyone.

        Comment


        • #19
          I wouldn't. You likely will need TRT anyway, so there isn't much sense in leaving something marginal in there. If you feel you will miss the feeling of a "boy" there, get a prosthetic.
          6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
          6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
          7/7/15: bHCG 56, AFP 42, LDH 322
          7/13/15: begin 4xEP, end 9/18/15
          10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
          10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
          4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
          4/20/16: RPLND @ IU - teratoma only!
          9/27/18: all clears up to this date!

          Comment


          • #20
            Originally posted by biwi View Post
            I wouldn't. You likely will need TRT anyway, so there isn't much sense in leaving something marginal in there. If you feel you will miss the feeling of a "boy" there, get a prosthetic.
            I’m so scared I won’t be able to be athletic anymore. I surf like 2-3 times a day.

            Comment


            • #21
              There is no reason you would not be able to surf, or do anything else, for that matter. Life without testicles is surprisingly unchanged.
              Dave
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #22
                Surgery complete. On my way home for recovery. No real data just yet but my surgeon says he thinks we got it early.

                Comment


                • #23
                  So already my girlfriend is concerned about the gel on my shoulder. I am also as someone who spends a lot of time in the sun, ocean ect. Sunblock and water don’t seem like they are going to work well with this stuff.

                  I see pellets and shots as my other options. A shot every 2 weeks seems like a lot but then again I’m not used to being dependent on any medications. I’ve been 100% healthy other than these two incidents of TC.

                  I know you guys have tried a bunch of stuff. I’ve been reading about aveed which seems like a shot every 10 weeks. My endo seems to really like the pellets.

                  Comment


                  • #24
                    Fellow x2 TC survivor. After second I/o went on a Androgel for almost 3 years. It was ok for me at best but always had elevated E2 and SHBG and low free T. Was on the 1.62% 3-4 pumps and it was a lot of up and down with mood and energy always sucked. Bloated with about 15lbs of water and got some minor Gyno. I was 38 years old and couldnt imagine slathering gel and lotion on my arms for the rest of my life and feeling like i was 80 years old. Something had to change.

                    Switched to cypionate injections about a year ago. It’s easy, practically painless and quick and I still get to control it at home. Subq injections x2 a week and I feel almost back to normal before all this cancer **** derailed 6 years of my life.

                    Bottom line, find what works for you and make sure your endo understands how you feel along with monitoring your labs.

                    Good luck to you!
                    TC#1
                    May 2013 - Left Orchiectomy - Stage pT1 Seminoma (2.3 cm)
                    June 2013 - 1 Dose 1000mg of Carboplatin ---> Surveillance
                    TC#2
                    May 2015 - Right Orchiectomy - Stage pT1 Seminoma (2.2cm)
                    TRT - Cypionate 100mg (Weekly)
                    June 2015 - Surveillance

                    Comment


                    • #25
                      The PET/CT came back with a possible spread to my lower abdomen. RPLND is on the table right now.

                      I need to know who the best of the best is for RPLND. John Hopkins? Sloan?

                      Comment


                      • #26
                        The PET/CT came back with a possible spread to my lower abdomen. RPLND is on the table right now.

                        I need to know who the best of the best is for RPLND. John Hopkins? Sloan?

                        Comment


                        • #27
                          Take a look at Indiana University. Dr. Einhorn's group for a possible RPLND.

                          - Matt
                          March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                          March 13th: Left IO 100% Classic Seminoma
                          6.3 x 5.1 x 3.8 cm, no invasion of anything
                          LDH never fully normalized
                          Stage: IS
                          Watchful Waiting
                          May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                          May 12th: started 3xBEP
                          Neupogen during Cycle 2 and 3
                          July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                          August 4th: Post Chemo CT/PET scan
                          September 4th: Port removed
                          Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                          Comment


                          • #28
                            Originally posted by surfhb View Post
                            So already my girlfriend is concerned about the gel on my shoulder. I am also as someone who spends a lot of time in the sun, ocean ect. Sunblock and water don’t seem like they are going to work well with this stuff.
                            You need to read the instructions,that came with your gel, but I recall needed to avoid water for something like 2-3 hours By then it's absorbed into lower layers of the skin & water exposure is OK.I don't recall a restriction on sunblock, but holding off on it for the same period seems like it makes sense,

                            Concern over transfer is way overblown. They test for this by applying it to the guy's abdomen & have the couple rub together for 15 minutes. Even with that they only doubled her (naturally very low) level of testosterone.

                            I self inject 200mg of testosterone cypionate every 3 weeks. Seems to work OK & it is more convenient than the gels, I thought the gels were better, but my company insurance changed & they would only cover Testim which I had tried & couldn't stand the odor.

                            I can't recall anybody who tried the pellets saying they really liked them, but I guess some do, I plan on staying with injections.

                            Where are you located? I believe Aveed isn't available in he US.

                            Bummer on the scan results, are they going with RPLND to avoid further chemo?

                            Dave
                            Last edited by Davepet; 01-12-19, 03:58 AM.
                            Jan, 1975: Right I/O, followed by RPLND
                            Dec, 2009: Left I/O, followed by 3xBEP

                            Comment


                            • #29
                              Originally posted by Davepet View Post

                              Youneed to read the instructions,that came with your gel, but I recall needed to avoid water for something like 2-3 hours By then it's absorbed into lower layers of the kin & water exposure is OK.I don't recall a restriction on sunblock, but holding off on it for the same period seems like it makes sense,

                              Concern over transfer is way overblown. They test for this by applying it to the guy's abdomen & have the couple rub together for 15 minutes. Even with that they only doubled her (naturally very low) level of testosterone.

                              I self inject 200mg of testosterone cypionate every 3 weeks. Seems to work OK & it is more convinient than the gels, I thought the gels were better, but my company insurance changed & they would only cover Testim which I ad tried & couldn't stand the odor.

                              I caan't recall anybody who tried the pellets saying they really liked them, but I guess some do, I plan on staying with injections.

                              Where are you located? I believe Aveed isn't available in he US.

                              Bummer on the scan results, are they going with RPLND to avoid further chemo?

                              Dave
                              I’m getting an open RPLND in the next 2 weeks and I’m scared to **** right now.

                              Comment


                              • #30
                                It is also 100% EC and last time it skipped to a node in my neck and I needed 3xBEP. My markers are still normal. Both UCLA and USC recommend the RPLND and I may be able to get it next week.

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