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Thoughts on completing 4th Bleo cycle

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  • Thoughts on completing 4th Bleo cycle

    So I’m a EC/Seminoma relapse classified stage 3 due to high LDH (2,200) and distant node in the chest. I’m a little unusual with only two nodes total (other in abdomen) despite the distant site. Also I’ve always had zero AFP/HCG despite the EC component. I was 90% seminoma at pathology.

    Anyways as Intermediate Risk I was given a plan of BEPx4. I’ve completed the EPx4 part and just have one more dose of Bleo left. I missed one dose earlier in cycle 3 due to being hospitalized, so my cumulative lifetime Bleo dose is currently 300 units (ten infusions).

    Thus far I’ve avoided any known lung issues, but I’m a little worried about creeping closer to the maximum lifetime dose. I’ve read sources that suggest EPx4 is sufficient here. Wondering if I should talk to my Onc about skipping the last Bleo dose. I have an unrelated thoracic condition in addition to some mitral valve prolapse, thus my pre-chemo lung function while healthy was only 80% of normal. I was previously a physically active person in the outdoors pre-chemo and I really want to preserve my lung function best I can. Some of the European literature I’ve read suggests 300 units should be the max as opposed to 400 in the USA.

    So many knowledgeable people here. Any thoughts? I’m leaning towards skipping the final Bleo but don’t want to make a dumb choice either. My Onc doesn’t treat a ton of TC and has been pretty much by the book throughout this.
    Last edited by vxmike; 04-30-19, 09:43 PM.

  • #2
    You've had 11 bleo doses & have no problems, one more isn't going to change that. The whole bleo lung toxicity is way overblown anyway.
    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #3
      Originally posted by Davepet View Post
      You've had 11 bleo doses & have no problems, one more isn't going to change that. The whole bleo lung toxicity is way overblown anyway.
      Dave
      Thanks. Trying to convince myself of that. Bleo just terrified me more than anything because of the lung issues. I almost considered doing VIP instead as first line. I’m curious if you had any issues as an older guy with Bleo? Isn’t it pretty rare to get Bleo over the 40s? I’m not young for TC....pushing 40 very soon.

      You’re probably right I should just let it go. I doubt taking it or not will change my lung or cancer outcome at this point.

      Comment


      • #4
        I had pretty severe shortness of breath during chemo but it resolved after chemo was done fairly quickly, it took time & effort but I actually got to a point where I was able to do more than I could before the TC. Pretty sure Bleo is the least of your worries, the other drugs cause way more difficulties for most guys.

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

        Comment


        • #5
          Did they do lung function tests after 1st and 2nd cycle? That should tell you if your lungs are ok. Also, if you're not having trouble walking and going about your day, you should be fine - that's what my oncologist told me to do daily walks and it kept me sane, so if you feel ok, that's a good sign!!
          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
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          • #6
            Originally posted by Davepet View Post
            I had pretty severe shortness of breath during chemo but it resolved after chemo was done fairly quickly, it took time & effort but I actually got to a point where I was able to do more than I could before the TC. Pretty sure Bleo is the least of your worries, the other drugs cause way more difficulties for most guys.

            Dave
            I had absolutely zero stamina and would get winded with half a flight of stairs during and after chemo. And I didn't even have bleo (4xEP).
            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!
            4/15/19: all clears up to this date!

            Comment


            • #7
              Originally posted by JoeTheAstronaut View Post
              Did they do lung function tests after 1st and 2nd cycle? That should tell you if your lungs are ok. Also, if you're not having trouble walking and going about your day, you should be fine - that's what my oncologist told me to do daily walks and it kept me sane, so if you feel ok, that's a good sign!!
              I had a PFT after cycle 3 that showed no changes, fortunately.

              I can barely stand for long without getting lightheaded and dizzy thus not much walking, but that’s a function of me being severely anemic. My Hemoglobin got cut in half after four weeks from day 1. BEP is absolutely destroying my blood cells. I’m even neutropenic despite getting Neulasta each cycle.

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              • #8
                Well I had my final Bleo dose today. Feel like crap but this is it. Now onwards to the CT scan!

                Comment


                • #9
                  Congratulations on completing your course, Mike. You'll start feeling better pretty soon. I'm betting the CT will be clear.
                  Nick

                  Embryonal Carcinoma; Seminoma. Marker negative.
                  August 2001: Right I/O .
                  August - December 2001: Surveillance .
                  December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
                  December 2001 - March 2002: 3xBEP .
                  Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

                  March 2012 - Ten years since finishing chemo.

                  Survivorship Blog is here

                  Comment


                  • #10
                    Originally posted by Smartie View Post
                    Congratulations on completing your course, Mike. You'll start feeling better pretty soon. I'm betting the CT will be clear.
                    I’m getting a little better by the day. Having my 3rd transfusion last week really helped. My CT results came in today with pretty good news. Both of my masses which were 4.7x5cm and 7x6.3cm to start with are now both 1.2cm in diameter. I did a rough calculation of the area and both are down about 95% in size. Still haven’t done post-Chemo labs, but so far this is encouraging.

                    We did the CT only four days after the final Bleo dose. Is it true this is kind of earlier than most people do it? Wonder if there is still swelling and/or necrosis that might continue to shrink?
                    Last edited by vxmike; 05-13-19, 12:55 PM.

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                    • #11
                      I did not receive my last 2 rounds of bleo I could hardly walk 5 yards without being out of breath and they did a lung function test and it was really bad so they stopped it but fingers crossed it worked just passed 1 year remission

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                      • #12
                        I can't recall the exact timing of my CT scan post chemo, but my node was still showing, y doc wasunconcerned & by the net scan it didn't show, so yes, they continue to shrink for a while after chemo is done.
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

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                        • #13
                          I had my post chemo CT scan about 3 weeks after. I did push to have it right after but my Doctor stressed to me not to have it done right away because those 3 weeks the nodes could still decrease. I know it is different for others. I believe Dr Einhorn has his patients get a CT done sometime during the 3rd cycle.

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                          • #14
                            Well great news! My Oncologist was thrilled with my CT results (less than 1.5cm residual four days after last Bleo and ~95% reduction in volume). LDH is 264 and been steadily declining but we’re going to check it weekly to ensure it keeps falling. I think it’s still a touch high due to hemolysis.

                            No further treatment advised at this time Just CT and labs every three months.

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                            • #15
                              Well my LDH is finally down to 144 after three consecutive post-chemo draws around 260. I was getting worried! My LDH was 201 after Orchiectomy that I relapsed from so hoping I’m finally clear for real.

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