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  • Congratulations!
    Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma ,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teratoma .Back to surveillance 05/02/19 Blood work all normal

    08/23/2019 normal
    12/04/2019 normal.
    04/01/2020 normal.

    Comment


    • Congrats Biwi !

      Just keep piling on those All Clears.

      - 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


      • Congrats biwi!!!

        Comment


        • Congrats biwi!!!

          Comment


          • 4 year CT/labs are all clear! One more bloodwork in 6 months, and one more CT+bloodwork a year from now! Its going to be weird going off surveillance!
            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!
            10/22/19: all clears up to this date!

            Comment


            • Sweeeeeeeeeeeeeeeeet!
              Painless lump 5/18/2017
              Orchidectomy June 2017 (4.5cm, rete testis involvement)
              Chemo Summer 2017 (2x7AUC carboplatin)
              No evidence of relapse since, but plenty of anxiety about it.

              I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

              Comment


              • Welp, got the call from the clinic where I get my Aveed (10 week testosterone injections - they can't be done at home yet per FDA regulations) that their office is closed due to covid-19 and they are only doing telemedicine. So my injection next week is cancelled. Looks like I am going to do a virtual call later this week with the Dr. and get prescribed something I can self administer at the pharmacy. I'm leaning towards self injections at the moment. I'm not thrilled about gels and the generic injections are pretty cheap. We'll see! Not the end of the world but a bit of an annoying wrinkle.
                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!
                10/22/19: all clears up to this date!

                Comment


                • While I understand the severity of the problem this virus is causing, suspending needed medical necessities is just wrong and not even called for in the guidelines. Somebody in your chain of services is downgrading the need for your injections to a sub-clinical necessity. Consider firing them. After all, grocery shopping is considered "necessary" how is a testosterone injection not???

                  That said if you do not have experience giving yourself injections, I'd advise a gel. I had several training sessions with a licensed nurse before I was allowed to self inject unsupervised. Even then, it took a fair amount of effort to overcome the idea of sticking a needle into my leg. It is totally do-able once you get past that, but get some instruction first, not something you want to do wrong.
                  Last edited by Davepet; 04-01-20, 06:35 PM.
                  Jan, 1975: Right I/O, followed by RPLND
                  Dec, 2009: Left I/O, followed by 3xBEP

                  Comment


                  • Yeah, I did give them some hell about it.

                    Had my doc conference yesterday and will be going on testosterone cypionate. 100mg weekly. Prescription is written and I'll pick it and the supplies up in the next day or two.

                    I did androgel for my first month or two after I/O and it worked but I think I'd rather do injections. My wife is also not keen on transfer with the little kiddos around. We'll see how I feel after being on self injections for a bit though! I have done some reading and watched some videos and it seems pretty straightforward. I'm not too afraid of needles although i'm sure i'll be a little nervous the first time. The doctor is also scheduling a telemedicine consult with a nurse for instruction. Realistically i'm comfortable with and know the process though as I have given my wife a half dozen or so injections during our rounds of IVF for our kids.
                    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!
                    10/22/19: all clears up to this date!

                    Comment


                    • HI biwi, sorry to hear that you are having issues with getting the Aveed injections and it brings up an issue I hadn't considered. I actually just sent in a medical information inquiry to the manufacturer asking what guidance they have issues for offices and patients. If I hear back I'll let you know. Personally, I think the physican's office is at fault and if they want to prescribe the drug then they should make someone available to administer it for those that are bilateral survivors, etc.

                      Mike
                      Oct. 2005 felt lump but waited over 7 months.
                      06.15.06 "You have Cancer"
                      06.26.06 Left I/O
                      06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                      06.30.06 It's Official - Stage I Seminoma
                      Surveillance...
                      Founded the Testicular Cancer Society
                      6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                      For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                      Comment


                      • Originally posted by biwi View Post
                        Had my doc conference yesterday and will be going on testosterone cypionate. 100mg weekly..
                        I am on 200mg every 3 weeks & the results are mostly OK, although some 3 week cycles seem a bit less than perfect. I personally wouldn't want to inject every week.

                        Originally posted by biwi View Post
                        I did androgel for my first month or two after I/O and it worked but I think I'd rather do injections. My wife is also not keen on transfer with the little kiddos around.
                        I believe the whole transfer thing is overblown so that the companies can deny responsibility if it happens in an odd case or so. The study mentioned in my Rx said they put the gel on the guys stomach, then rubbed together for 15 minutes & only doubled her (already very low) T levels.If you keep clothing over the application site there is no danger to the kids.

                        Originally posted by biwi View Post
                        We'll see how I feel after being on self injections for a bit though! I have done some reading and watched some videos and it seems pretty straightforward. I'm not too afraid of needles although i'm sure i'll be a little nervous the first time. The doctor is also scheduling a telemedicine consult with a nurse for instruction. Realistically i'm comfortable with and know the process though as I have given my wife a half dozen or so injections during our rounds of IVF for our kids.
                        I had a number of injections provided by a nurse before he showed me how to inject myself, even then, it took few times of his observing me before I was cut loose, Needles are so sharp these days, you normally won't even feel them. Still even after quite a few years, I still pause a bit before going in. I have, on a few occasions, apparently hit a nerve causing some muscle reaction. Doesn't seem to be a problem, just a bit uncomfortable. Although very infrequent, I sometimes get a sore spot near the injection site for a few days. I used to alternate between upper left, upper right middle left, etc, but my doc said to go for the biggest part of the leg muscle so now I just alternate right to left.

                        I would ask about doing 150mg every 2 weeks, I doubt you will notice ant difference other than less needle sticks.
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • Originally posted by Mike View Post
                          HI biwi, sorry to hear that you are having issues with getting the Aveed injections and it brings up an issue I hadn't considered. I actually just sent in a medical information inquiry to the manufacturer asking what guidance they have issues for offices and patients. If I hear back I'll let you know. Personally, I think the physican's office is at fault and if they want to prescribe the drug then they should make someone available to administer it for those that are bilateral survivors, etc.

                          Mike
                          Agreed, I wasn't particularly happy with them since my case is a little different than just someone looking to boost their T levels that can go without for a month or two. The clinic I see does handle a number of transexual/sex change patients though which are probably in a similar boat. The doc did tell me they don't have a lot of folks on it, they said probably 5-10% on Aveed, 60-75% of their patients are on self injections, and pretty much the remainder on gels.
                          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!
                          10/22/19: all clears up to this date!

                          Comment


                          • Originally posted by Davepet View Post
                            I am on 200mg every 3 weeks & the results are mostly OK, although some 3 week cycles seem a bit less than perfect. I personally wouldn't want to inject every week.

                            I believe the whole transfer thing is overblown so that the companies can deny responsibility if it happens in an odd case or so. The study mentioned in my Rx said they put the gel on the guys stomach, then rubbed together for 15 minutes & only doubled her (already very low) T levels.If you keep clothing over the application site there is no danger to the kids.

                            I had a number of injections provided by a nurse before he showed me how to inject myself, even then, it took few times of his observing me before I was cut loose, Needles are so sharp these days, you normally won't even feel them. Still even after quite a few years, I still pause a bit before going in. I have, on a few occasions, apparently hit a nerve causing some muscle reaction. Doesn't seem to be a problem, just a bit uncomfortable. Although very infrequent, I sometimes get a sore spot near the injection site for a few days. I used to alternate between upper left, upper right middle left, etc, but my doc said to go for the biggest part of the leg muscle so now I just alternate right to left.

                            I would ask about doing 150mg every 2 weeks, I doubt you will notice ant difference other than less needle sticks.
                            Yeah, we'll see how the weekly goes. I'll follow his advice at first and then play it by ear. He did specifically say "weekly to start" implying that the schedule and dosage may be flexible. I kinda hope the self injections do end up working well for me. I didn't care about the cost of Aveed up to this point (~$1100 my cost per 10wk injection) but with our kids getting a little older and my CT scans probably ending this fall we no longer will be hitting out out of pocket max all the time probably starting next year. So going forward it would be nice to only spend ~30/month on T!

                            I agree on the transfer thing but my wife is pretty skittish on it. And honestly I found it annoying to have to put it on and let it dry every morning.
                            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!
                            10/22/19: all clears up to this date!

                            Comment


                            • Did my first self injection with the nurse watching and directing over video chat. Went pretty well. Took 30 seconds to muster up the courage to stab myself but I got it, and it really wasn't all that bad or any worse than when someone else does it to you. We'll see how the next month goes!
                              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!
                              10/22/19: all clears up to this date!

                              Comment


                              • I do find a once every 3 week injection far more convenient than daily gels. Be sure to sterilize the site & hands thoroughly prior to doing it. Others on here have advised that the bathroom isn't a good place as well, even though it seems natural.While it gets better every time you do it, I still pause a few seconds before sticking it in. I suppose that may never go away. Hey we beat cancer, we can manage this, right?
                                Jan, 1975: Right I/O, followed by RPLND
                                Dec, 2009: Left I/O, followed by 3xBEP

                                Comment

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