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  • Questions/ concerns about Bleo

    Hello,

    My husband was recently diagnosed with stage 1b TC, Tumor 99% Embryonal 1% seminona.

    We have chosen the 1xBEP rather than surveillance due to his family history, the odds of reoccurrence and risk of more chemo in the future. Not convinced it is the right choice but at this point every option/choice feels bad.

    We know chemo is hard and toxic, but upon doing more research we are feeling more afraid of the treatment than the cancer.

    Bleo and lung problems is the scariest to us at the moment. The idea of permanent and/or progressive lung damage/ disease is very unsettling.

    Most of the research I have found refers to risk associated with 3xBEP bleao doses not the single round.

    Can anyone here speak to their experiences with bleo and lung toxicity with one BEP treatment? If you did or did not have lung damage after, how it was caught and managed, was mild or severe, permanent or temporary,anyone know of an non bleo alternative for this type of case/treatment....?

    Any information would be deeply appreciated

    Thank you!
    2/7/18- Husband diagnosed
    2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
    3/12/18-4/1/18 Adjuvant BEPx1

  • #2
    I wouldn't be worried about 1xBEP. There are a few thousand of us on this forum who went through 3xBEP & had no lung issues. Can it happen? Sure. Is it very likely? Not at all. The vast majority get through 3XBEP with no lasting lung problems.1XBEP should not be a problem at all. Please keep us posted with his progrerss.

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

    Comment


    • #3
      I did 3xBEP. I had a pulmonary function test just prior to and shortly after chemo. It revealed a 12% reduction in lung capacity. I don't recall if the pulmonary specialist said whether or not I would regain the lost capacity or not.

      As Dave said; I would not be worried about a single cycle of Bleo.

      He's more likely to get banged up by the other two drugs in that cocktail: Cisplatin and Etoposide....but with TC and chemo at his stage and pathology there's not much one can do to avoid those two specific drugs.

      - 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
      July 10th 2018: 4 YEARS ALL CLEAR !

      Comment


      • #4
        Thank you both SO much for your input! It may sound silly but just having you take the time to reply brings tears of gratitude to my eyes. We feel so isolated and overwhelmed right now. Seems like every choice is filled with the same amount of pros and cons, you just trade one set of problems for another and hope for the best. Not something I am very good at

        This is especially hard for him as his brother suffered from TC in the late 90's and my husband was put in the position of being his caretaker at only 17 years old. His bother was put on surveillance when he probably shouldn't have been (hence his choice to go right to BEP) It was close to a 2 year battle and the treatment was what nearly killed him, not the cancer.

        Can I ask you how you feel your quality of life is after chemo? I know the short term side effects are hell, but once you made it through and into the ''all clear phase" how closely did you become to feeling "normal" again?

        Thank you again
        2/7/18- Husband diagnosed
        2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
        3/12/18-4/1/18 Adjuvant BEPx1

        Comment


        • #5
          I went through 3xBEP that ended 7 months ago and I feel normal. In fact 2 and a half weeks after I went on a small weekend road trip and a month after chemo I flew across the country for a week for my sisterís wedding. Really the only side effect is mild neuropathy but itís been improving to the point itís pretty much gone now. The worse side effect honestly is anxiety. Every small pain makes you wonder.
          3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

          Comment


          • #6
            Dcalandrelli Thank you so much for sharing your experience. That is very reassuring that you are feeling so well. I 100% understand your anxiety. I fear that will be the burden we carry as well. Hopefully it will fade in time as your live a long healthy cancer free life
            2/7/18- Husband diagnosed
            2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
            3/12/18-4/1/18 Adjuvant BEPx1

            Comment


            • #7
              With 1xBEP chances of having any major issues or long term complications are very slim. There will be minor effects (including hair loss) for a few weeks and that will be about it. Chances of major issues or long term complications are probably something like the chances of getting hit by a car walking to school/work. That is one of the goals of doing 1xBEP instead of surveillance - preventing a relapse requiring 3x as much chemicals to treat.
              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 - 9/18/15: 4xEP
              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!
              9/27/2018 all clears up to this date!

              Comment


              • #8
                Hi biwi- Thank you for your input. I see you are at all clear status, congrats on that. I realize your stage is different than my husbands so you had different choices, but can I asked why you chose 4xSP rather than 3xBEP? How are you feeling after your treatment?
                Thanks again for you time
                2/7/18- Husband diagnosed
                2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
                3/12/18-4/1/18 Adjuvant BEPx1

                Comment


                • #9
                  Oops- Meant 4xEP.... not sp
                  2/7/18- Husband diagnosed
                  2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
                  3/12/18-4/1/18 Adjuvant BEPx1

                  Comment


                  • #10
                    I received 4 BEPs. My lung functions were not checked thoroughly but i feel just fine in that area. I exercise every day, dont notice anything.

                    Comment


                    • #11
                      Bleo may i say may cause lung issues. The biggest concern is if you change atmospheres. Like scuba diving or flying in a plane. It is advised to wait a year after 3 x Bleo to scuba dive. I know this cause my last duty station was in a scuba diving wonderland. As far as quality of life after treatment, well pain is temporary so you can decided to let it dictate your life and what you do or you can own it and do everything he did before. I cycle, swim in my pool and surf at the beach. I excrise amd run circles around guys half my age. I had the hell beat out of me with everything i had to go thru in getting to 4.5 years remission after HDC. Baring any thing unforseen he should do fairly will after 1 x bep let alone 3 x bep
                      Jan 2012- U/S mass in Left testicle
                      Feb 2012- I/O performed to remove cancer
                      Mar 1,2012- pathology pure seminoma
                      Mar 7, 2012 PET SCAN stage IIa
                      April 2012 Mayo clinic carbolite.
                      May 2012 carbolite failed, started BEP x3
                      August 7th 2012- BEP complete
                      April 2013 CT/PET show relapse
                      May 2013 RPLND
                      Aug 2013 Relapse again Started VIeP x2
                      Oct 2013 HDC AUTOLOGOUS
                      Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                      Feb 2014 confirmed false positive all clear FINALLY !
                      Jan 2015 1 year cancer free Pet/CT scan
                      Jan 2016 2 years cancer free "Pet/CT scan
                      Jan 2017 3 years cancer free "Pet/CT scan
                      Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

                      Comment


                      • #12
                        Thank you. Can I ask if it is true that oxygen is never to be used after Bleo no matter if you show lung damage or not? I will ask the Doc about this as well but am impatient and want all my answers now, lol
                        2/7/18- Husband diagnosed
                        2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
                        3/12/18-4/1/18 Adjuvant BEPx1

                        Comment


                        • #13
                          Originally posted by melanie View Post
                          Hi biwi- Thank you for your input. I see you are at all clear status, congrats on that. I realize your stage is different than my husbands so you had different choices, but can I asked why you chose 4xSP rather than 3xBEP? How are you feeling after your treatment?
                          Thanks again for you time
                          My oncologist had personal experience with a patient that had bleo issues in 3xBEP and he heavily leaned toward 4xEP. Other docs said either were fine and I didn't have a strong opinion at the time. If I did it again, it would still be tough to decide. the extra E and P are not good for you, and probably cause more long term health effects than avoiding bleo? But their effects are much further away timewise than Bleo affects, which fade with 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 - 9/18/15: 4xEP
                          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!
                          9/27/2018 all clears up to this date!

                          Comment


                          • #14
                            Thank you for helping me to understand, biwi.
                            2/7/18- Husband diagnosed
                            2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
                            3/12/18-4/1/18 Adjuvant BEPx1

                            Comment


                            • #15
                              Regarding my quality of life post chemo:

                              The 1st year was hell. I recovered physically in the first few months, but the mental aspects of what happened were far, far worse. I had delayed peripheral Neuropathy set in then. It was pretty annoying. It has only recently gone away in the last couple months..

                              The 2nd year was still some mental struggles and I can say the mental struggles really lasted 2 full years for me.

                              Between the 2 and 3 year mark I feel that I have completely healed mentally. Physically I am in the same spot as I was prior to chemo, if not better.

                              The only thing even now is that sometimes I swear I will notice pain quicker than I ever did. Seems like I injure joints and muscles very easily.....but I don't really think I can blame the chemo for that.

                              - 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
                              July 10th 2018: 4 YEARS ALL CLEAR !

                              Comment

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