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Halfway through cycle 3

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  • Halfway through cycle 3


    So here's my story. I'm 23 years old, and about 2 months ago I was diagnosed with stage IIIB testicular cancer that had moved up all the way to my neck. My largest tumor is 9 CM on my abdominal cavity. The only symptoms I went in with were lumps on my neck.

    Originally, I had been diagnosed abroad with testicular cancer but it had not originated from my testicles, rather my abdomen. Upon arriving in the states they started chemo almost immediately after doing a few additional tests. There they found that I in fact had a "burned out" tumor that started in my testicle, that while no longer an immediate danger, may cause other issues in the future and need to be removed.

    I;m about halfway through my 3rd cycle of chemo and so far so good, I've been dealing the side effects as best I can. I'm trying to get an understanding for what might be coming.

    Obviously everyone in this forum has a similar story, but is there anyone who has experienced it quite similar to me who can kind of give me a sneak peak at what to expect? I haven't had the testicle removed yet, I'm probably looking at RPLND and some other additional work as well. They've said my tumor markers have responded very well, and the lymph nodes on my neck have completely disappeared(to the naked eye at least).

    Truthfully I don't really know what I'm looking for in this post, I guess assurance that at the end of this crap storm life actually does go back to normal.

    Thanks to anyone who can help,

    P.s. Can anyone describe the feeling when your lungs are being affected by the chemo? I woke up this morning with slight shortness of breath (after using the bathroom for an extended period of time, woohoo 3 day constipation) and it's developed into a slight wheeze and uncomfortable feeling in my throat

  • #2
    My 18 year old son had an experience similar to your own. Stage IIC. He was diagnosed last July, completed 3x/BEP. He attended U of A online and completed 11 credit hours while on chemo. He physically attended U Of A in January with a full head of hair and prosthesis. He has joined a fraternity and completed 16 credit hours in the Spring. He does not notice any shortness of breath from the bleo. RPLND is not usually recommended for Seminoma so he is living with residual necrosis in his retroperitoneal area. Hang in there! You can do this!


    • #3
      Hi Tzanchan.

      My 20 yo son finished his BEP for 3a non-seminoma a few weeks ago. He has residual masses in his nodes and lungs, but they are small enough that they put him on surveillance for now. He's starting to feel normal again as far as brain fog, and his hair is beginning to return. It's great news that your markers and nodes are responding to treatment.

      I would encourage you to call your doctor or on-call nurse about the shortness of breath. My son had it during cycle 3 and it turned out he had pulmonary embolism and needed to go on blood thinner. His symptoms were a couple episodes of feeling like he couldn't breath for a few seconds when laying down. His doctor wanted him to come in for an exam and then decided to send him for a scan after listening to his lungs.

      2.09.2018 20 yo son diagnosed away at college
      2.12.2018 visit oncologist back home
      tumor markers: AFP 2.4 LDH 204 HCG 2
      2.19.2018 CT results
      two right aortocaval nodes 1.4 x 1.6, 1.3 x 1.5 cm
      large left pelvic mass 5.5 x 3.2 cm
      lung nodule 2.5 cm
      2.21.2018 right I/O
      pathology: embryonal with focal teratoma, no LVI
      3.12.2018 begin 3 x BEP
      3.30.2018 nuclear study- left pelvic mass is splenule not mets
      5.03.2018 chest CT for shortness of breath, dx pulmonary emboli, start blood thinner
      6.04.2018 4 wk post BEP scans
      lung nodule 6 x 11 mm
      two aortocaval nodes 6 x 10 mm, 6 x 10 mm


      • #4
        You nearly made it through, man!! It will only get better from now on. Orchiectomy is pretty easy compared to chemo - hope you don't need RPLND. Most of side effects go away when chemo is done, so it's pretty exciting to be nearly done with it!! Good luck, hope you're feeling ok now
        July 2016 - Left I/O
        December 2016 - BEPx3
        All clear for 2 years now!

        My Testicular Cancer Support Kit
        First Oncologist Visit Checklist
        3 Things I Wish I Knew Before I Started Chemo
        3 Reasons Why People Disappear From Your Life During Cancer
        Simplify Cancer Podcast


        • #5
          I was diagnosed 3b one 2009, had to stop bleo treatment due to damage to my lungs. I had lung function tests at the beginning and half way, which showed marked decrease in lung function (115% of expected down to 60%). Bleo was stopped due to this.

          If you’re having breathing issues notify the doctors immediately! It’s not something to mess around with. It hit me that my lungs were damaged when I went upstairs to my bedroom and almost passed out. Got that really light headed feeling.


          • #6
            So sorry. Life will go on, there will be physical & emotional healing afterwards. I would reach out to a doctor.
            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.