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  • Any One Experience this?

    Hi All -

    I hope i am in the right forum. I was diagnosed with Non-seminoma T. Cancer in June of '08. Had my left testicle removed and underwent 4 rounds of chemo (5 days in a row, then two weeks off). It was a combination of Etoposide and Cisplatinum (sp?).

    I then had an LDR performed by Dr. Sheinfeld in October of '08, biopsy came back clean and i was on my way to recovery.

    I waited 4 months or so before going back to the gym, per Dr's orders. I then begin going back to the gym doing some light lifting and so forth. Everything was going fine, felt okay and stronger as time went on. Was never a very strong person but by October of ’09 was doing a one max bench of 190 and curls of 55.

    However over the last 5 or 6 months i have noticed a number of things happening to me. I have become progressively more fatigued, I am now only benching a max of 150 and my curls have gone down to 30 (this is an example, all of the other exercises have gone down in weight as well). I sweat all the time and am really struggling to make it through the day. Nothing in my routine has changed, all of this stuff has gradually happened over the past 6 months or so.

    I spoke to my Oncologist and she did a T-Test (I never had one done before) it came back at 254 (Total), I then got it checked again and was about a 100 points higher. I went to an endo and he really could not figure it out. He said only about half my symptoms were consistant with low T (hair growth, libido and erection have really not dimished to a noticible level).

    I then got my thrroid checked, it was fine.

    I was told it could be a delayed effects from the chemo and that I need to wait it out. Wasn’t really happy with that answer. I don’t understand how I can have the chemo, feel horrible, seemingly fully recover, then feel worse then I ever have. I go for my scheduled scans and bloodwork. Im not getting sick so I don’t think its an immune system issue, just tired, very low energy and what appears to be muscle wasting.

    Has anyone experienced this? Please help….
    Diagnosed: 6/08
    6/08 - Left Orchiectomy
    7/08-9/08- EP Chemo
    10/08 - RPLND
    10/08 - Present, Cancer Free

  • #2
    Are you sleeping more than you used to and when you wake from sleeping do you not feel rested?

    Before TC I use to work out quite a bit and was lifting close to what you were. I'm an athletic build and never really showed huge mussel gain when i worked out either. Anways, that's all besides the point. I really started to become very tired all the time. So about a year ago I finally went in for it. A couple sleep studies later, a trial using a CPAP machine (which sucked),they then diagnosed me with "idiopathic sleepiness". AKA, we don't know what's really wrong with you but we know there is a problem. I would come home from work at 5pm and sometimes sleep from then until 8am, wake up and feel tired still. Other times, I could sleep most the day away or wake up briefly, go to the bathroom and then back to sleep. The doctor prescribed me Provigil which has improved my quality of life 10 fold.

    I am no way saying that this is your problem, BUT it may be something completely unrelated to your TC and the treatment that followed it.

    Google "idiopathic sleepiness", check out the symptoms. The two things I first asked are also indications. If you're concerned about it still, feel free to ask me questions but just remember I'm no doctor and I can only tell you what I've experienced or learned from the whole experience.

    Hope this helps!
    5/4/2010 - Diagnosed with TC
    5/20/2010 - Right I/O - 1.8cm - no LVI - 70% Seminoma - 30% EC - Less than 1% Teratoma - Stage 1A
    6/7/2010 - RPLND Scheduled. Oncologist requested for second opinion.
    6/15/2010 - Oncologist seen and Chemo not an option for stage 1A.
    7/6/2010 - Right sided template RPLND - Surgeon Dr. Stephenson(Huntsman Cancer Center)
    7/12/2010 - Pathology clean on surveillance.
    11/11/2010 - Clean


    • #3
      Hi Agencore –
      Thank you for your response. I’m sleeping more on the weekends than I ever did and I do not feel rested at all. I get through the day with work because I don’t have a choice but instead of going out on the weekends they are dedicated to catching up on sleep.

      To your point, especially towards the end of the week, I am in bed asleep by 8:30-9 because I am just so drained.

      I actually was diagnosed with sleep apnea about 3 years ago (when I was at my heaviest of about 230) and the CPAP was terrible really didn’t help. I was convinced once I lost weight the apnea would go away and it did and 8 months ago I felt great. I am now down to about 195 and feeling worse than ever. I will definitely research Idiopathic sleepiness. I am familiar with Provigil and will keep it in the back of my mind.

      It did help and I thank you…good luck with your surgery next month.
      Diagnosed: 6/08
      6/08 - Left Orchiectomy
      7/08-9/08- EP Chemo
      10/08 - RPLND
      10/08 - Present, Cancer Free


      • #4
        Don't let them tell you Post Chemotherapy

        Good luck Agentc0re,
        I am having the same issue right now. I never had chemotherapy. I did have the RPLND and my Testosterone level is mid 200 and slowly rising. I would like to know what is going on as well. The doctors dont seem to know what it is. I am 155 lbs and I thought I was in shape. I never had any sleep issues prior to the TC. I go to the doctor tonight and I will see if he has any new news for me. Please update me if you have any new info as well I will update this tonight. I had 100 % embryonal carcinoma. I have not been checking this sight too often, I thought I was all done with this. I now see that after care is just as important as the treatment. I will update this with any info I get from any of the doctors I am seeing.
        Last edited by Litmonster; 06-29-10, 01:49 PM. Reason: Switched to my computer
        9/2009 - Suspected TC
        10/2009 - Right I/O - 88 cm 100% EC - Diagnosed with TC
        12/2009 - BiRPLND > 2cm


        • #5
          I can definitely relate. I am just a few days shy of two years post-chemo. I fell way worse now than I did when I walked out after my last bleomycin treatment. I've had so many tests that showed nothing wrong. I do, however, think it is a testosterone problem. I had a "normal" result in Feb. of '09, but I've also had two abnormal results: 178 total back in April and 198 total two weeks ago. I am convinced that a lot of my problems are related to this. Of course, I now wonder what is causing the low-T: problem with the testicle (it is hard for me to remember having testicleS), problem with the pituitary, or problems with the hypothalamus. I guess that is the next nut to crack. I would keep testing/pushing and there is no way that I would accept a diagnosis of delayed chemo effects. Good luck to you!

          15 May 08: Right I/O 80% Embryonal Carcinoma 10% Seminoma 10% Teratoma
          Pre I/O AFP 4.7 HCG <2 LD 140
          Tumor size 1.2X1.2X1.2
          22 May 08: CT Scan clean
          3 Jul 08: AFP 2.5 HCG <2 LD 169
          5 Jul 08: CT Scan clean
          14 Jul 08: Started one and only round of BEP
          29 Jul 08: Last chemo treatment
          As of 13 Jul 10: No sign of cancer


          • #6
            Hi scal

            One of the thing you mention that I have also been experiencing is hot flushes and sweats. I'm about 6 weeks post chemo and over the last few days have started up some very light weights, all because I feel so feeble at the mo (I'm not exactly a muscular person, 25 yrs old, 5ft' 9", 66kg, at the best of times). They tend to come after the weights or after a long walk so may be related to exercise.

            Seeing my consultant in a couple weeks for ct san results so will ask about it then and suggest a testosterone test. Sorry I can't offer any useful advice, just raising my hand as someone with similar symptoms.

            Good luck!
            Last edited by m.a.r.k; 07-27-10, 04:25 PM.
            Right Orchidectomy.....15.03.10
            Biopsy.....5.5cm seminoma
            CT.....7cm abdominal tumour
            3 x BEP.....19.04.10, completed 23.06.10
            1st follow up CT scan.....July 22nd.
            CT results, Aug 9th.....tumour shrunk to 2.1 x 1.6cm
            PET scan, Sept 10th.....mass inactive! All clear.
            CT, Jan 5th.....all clear.

            Be honest in all your dealings and never experience fear