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  • melanie
    started a topic Questions/ concerns about Bleo

    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!

  • melanie
    replied
    Thank you Joe! I hope you are all clear and thriving now and forever

    Leave a comment:


  • JoeTheAstronaut
    replied
    When I was doing BEPx3, my oncologist said I'd notice any toxicity very quickly. I was going for daily walks and all was fine, Also, there would be a lung function test prior to treatment to make sure it's safe to start! And another test after each round, in this case, once

    Leave a comment:


  • JeskiM69
    replied
    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

    Leave a comment:


  • melanie
    replied
    Thank you for helping me to understand, biwi.

    Leave a comment:


  • biwi
    replied
    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.

    Leave a comment:


  • melanie
    replied
    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

    Leave a comment:


  • eodtech2001
    replied
    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

    Leave a comment:


  • sanis
    replied
    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.

    Leave a comment:


  • melanie
    replied
    Oops- Meant 4xEP.... not sp

    Leave a comment:


  • melanie
    replied
    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

    Leave a comment:


  • biwi
    replied
    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.

    Leave a comment:


  • melanie
    replied
    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

    Leave a comment:


  • dcalandrelli
    replied
    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.

    Leave a comment:


  • melanie
    replied
    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

    Leave a comment:

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