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Joining the club

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  • Joining the club

    Hey folks,

    Brand new member of the club here. Just had my second I/O yesterday and I wanted to say how much lurking on this forum has helped me over the last few years. I had my first I/O on the right side in late 2015, stage 1 seminoma ~4cm, went on observation, and mostly forgot about the ordeal. Recently I found lumps in the left side (three lesions between 1 and 2 cm each) and had it removed yesterday. We put in one prosthetic and may do the other when I'm all healed. Started on T gel right after the surgery, I was diligent about making this happen thanks to advice I've seen here on the forum.

    I'm waiting to hear back on the biopsy and hoping I can go on observation again. I had my last CT / xray / blood panel two months ago and was all clear. I have handled all this stuff pretty well but chemo honestly is the first thing that truly scares me.

    They offered for me to do 1x cisplatin after the first I/O and I opted not to. I'm 33 and super active, also I love and make music. Damaging my fitness or hearing are things I want to avoid if possible. I have been clear for 2.5 years now in terms of lymphatic system, lungs, etc so far, just now have this second primary TC. If this is another stage 1 seminoma, I hope they'll offer the option to do 1x carbo/cisplatin or just go on observation again.

    Some questions:
    - For those who have done it, how hard is the 1x carbo / cisplatin?
    - Did it have long term effects for you?
    - How do you feel about your decision since doing it?
    - For those who do testosterone shots, do you do them yourself? I'm gonna be playing with TRT options and would prefer to be able to do it all solo.

    Sad to join the club, but also grateful there is a club. Thanks in advance for any help!

  • #2
    As for TRT, I am on Aveed 10 week injections, they have been great. I just forget about it for weeks at a time.
    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!


    • #3
      First off chemo sucks yes! But it shouldn’t be scary to ya. You’re gonna experience some of the side effects but that depends on how much hemp u get. One round shouldn’t be that bad. I took three round of EP and my ringing in my ears didn’t get worse. Maybe just a little more frequent. I lost my hair of course and I have tingling sensation in my toes. Im still working through the weight I gained and trying to get back to 100% physical fitness but it takes time. Honestly the worse part of chemo for me was having to get a port then deal with the complications of blood clotting that I had. If it was me I would probably go for the one round of cisplatin or whatever chemo they recommend to zap it good and decrease chances of recurrence.


      • #4
        Sorry for relapse. Chemo is not a walk in the park, but doable if it comes to that in your case.
        Son Grant
        dx 12/21/16 at age 17

        BEP x3
        Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
        2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
        Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.


        • #5
          Sorry to hear about your second take on this... I make music too and I did 3 rounds of BEP and that hasn't had an impact on me - the hearing came back to normal or at least, not that I can notice any difference... Also, I don't have any remaining side effects that relate to nerves so that does not stop me from playing guitar. But hopefully you won't need to go that way anyway and one round might do it well for you!
          July 2016 - Left I/O
          December 2016 - BEPx3
          All clear for 2.5 years now + new baby!

          Simplify Cancer: Man's Guide to Navigating the Everyday Reality of Cancer
          My Testicular Cancer Support Kit
          First Oncologist Visit Checklist
          Simplify Cancer Podcast


          • #6
            I do my own shots, one every 3 weeks. I still feel a tad nervous before each shot, even though I rarely even feel it since the needles are so sharp. I did need to see a nurse for the first month or so to get my injections & then for several months to learn how to do it myself. It is easier than you'd think.

            Last edited by Davepet; 05-26-18, 04:05 AM.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP


            • #7
              Thank you all for the support, it means a lot to hear from folks who've been through this!

              1 week post surgery update:
              - The I/O went well, still waiting to hear back on the biopsy. Really hoping it's a seminoma again and thus far unsure about follow up treatments.
              - The prosthetic takes some getting used to and is causing a little pain but nothing unmanageable. They were only able to do one during the I/O, as the urologist didn't want to do any additional incisions right now in the case that I need to heal up and start chemo soon.
              - Maybe TMI but sex appears to work fine, if a bit tender (expected since it's only been a week). Always a big relief to know that's ok.
              - Back at work today, mostly off the pain meds.
              - The testosterone gel is surprisingly easy and I definitely feel more energetic, higher libido, and better moods since day 1 of starting. I must have been low before.

              Dave, where on the body do you do your shots? A trans friend showed me how they do their shots in the thigh muscle, which seems a hell of a lot more manageable angle-wise than hitting the butt. I don't have any injectable T yet but will be experimenting with all the options over the next few months.

              For those on gel: when you apply it in the morning, do you worry about being intimate with your partner that night? Do you shower before getting close, or is the T pretty much entirely absorbed by the end of the day?


              • #8
                Yes, I inject into the front of the thigh. It's an inch & a half needle, although I used 2" when I was learning. I was originally on gel & never worried about contact. The way they test for transfer is extreme & only doubled the female's very low level of testosterone, after 15 minute of vigorous rubbing.
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP