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  • Bleomycin Doses 7 v 9

    Hi All

    Just wondered if anyone had any knowledge regarding the following.

    i missed my first 2 single Bleo days due to issues with a blood condition I had. I’m now on my final long week and after the next two single Bleo days I will have had 7 doses. I spoke to oncology doc yesterday and they have said it’s my choice whether to add the missed Bleo doses on and have the full 9 doses. She informed me the research showed a big difference between 9 doses and 3 but was uncertain if missing 2 doses would have any impact.

    For now I have said as long as my body can take it to press on for the full 9 though I can’t say 4 Bleo days in a row is massively appealing 😂 I figure having had the Bleo and the associated life long effects would seem silly not to have the full 9.

    Again just wondered if you guys were aware of any knowledge regarding missing 2 doses. Also curious in case I’m unable to complete all 4.

    Thanks

    deekz

  • #2
    Hey deekz, from memory if you can't do bleo, they might add on another round of EP - but it depends on your stage, size etc. If you were to play catch up, wouldn't they space it out, like 2 a week? Also, are you getting steroids with bleo? It made it sooo much easier for me!!
    July 2016 - Left I/O
    December 2016 - BEPx3
    3 years all clear + baby after TC!

    Take Your Life Back After Cancer 7 Day Challenge - Sign Up Free
    ---
    Personal advice on the everyday reality of TC - Testicular Cancer Support Kit
    ---
    My book on overcoming key challenges us guys face during cancer - Find Out More
    ---
    Listen to expert opinions and survivor insights - Listen to Simplify Cancer Podcast

    Comment


    • #3
      Hi Joe,

      yeah I believe hydrocortisone is given along with the Bleo. I’ve had 2 single doses so far, they were not too terrible though neuropathy and made a mess of my teeth and gums on the last one were the main issues. Kind of weird how the single Bleo doses seem to hit harder than when having it as part of the 5 day course, weird little drug lol.

      deekz

      Comment


      • #4
        I always found the Bleo only weeks pretty easy. Neuropathy is normally caused by the cisplatin, not the bleo. I've never heard of adding missed
        doses at the end, but I'm no doctor.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

        Comment


        • #5
          I've never really heard of adding makeup bleomycin doses to the end of a therapy and definitely not on a daily basis. I am assuming you had good risk disease if you were to receive BEPx3. Perhaps your doctor could reach out to a known expert, like the team at Indiana University, if they are not one and ask their opinion? Here is a list of experts from our friends at the TCRC. http://thetcrc.org/experts.html

          Mike
          Oct. 2005 felt lump but waited over 7 months.
          06.15.06 "You have Cancer"
          06.26.06 Left I/O
          06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
          06.30.06 It's Official - Stage I Seminoma
          Surveillance...
          Founded the Testicular Cancer Society
          6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

          Comment


          • #6
            Hi Mike

            i probably didn’t write that clear, by 4 in a row I meant spread over 4 weeks with a single day each week. It was my first two single days I missed after my first long cycle due to having to be admitted to hospital with complications from my blood condition.

            I was originally BEP over 3 days but as of cycle 2 they spread it over 5 days to try minimise the impact. I just finished my final 5 day stretch on Sunday which is 3 long cycles in total (feeling this one, so far I’ve had energy for days but feeling beat up now lol). Back in tomorrow for a single Bleo after a chat with onc docs in the morning.

            Your right Dave about the neuropathy I’m feeling that today already having finished the 5 day. Luckily and fingers crossed I have avoided fevers during all this so far. Not sure which drug is messing my mouth and teeth up but that sucks. Bleo is definitely a chest killer for a few days and causes tiredness but nothing major, I think the culmination of the 5 day kicks in around second Bleo which is i why I thought the second Bleo hit hard.

            thanks for the responses guys I’ll see what I find out tomorrow

            deekz

            Comment


            • #7
              I guess we are all different, I actually felt a boost in energy on my bleo only days (probably the anti nausea steroids, is my guess)
              Last edited by Davepet; 06-03-20, 03:37 PM.
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Dave, those steroids will always be in memory as a ray of light!!
                July 2016 - Left I/O
                December 2016 - BEPx3
                3 years all clear + baby after TC!

                Take Your Life Back After Cancer 7 Day Challenge - Sign Up Free
                ---
                Personal advice on the everyday reality of TC - Testicular Cancer Support Kit
                ---
                My book on overcoming key challenges us guys face during cancer - Find Out More
                ---
                Listen to expert opinions and survivor insights - Listen to Simplify Cancer Podcast

                Comment


                • #9
                  Hi guys

                  Quick update, looks like going ahead with all 9 doses of Bleo. I tend to see a different onc doc each time I go and Wednesdays doc seemed to be in favour of just cracking on and finishing the doses. Seems quite common here to add missed Bleo doses at the end of the treatment. Did Wednesdays and feeling rough today but that's mainly due to my blood condition and anaemia rather than the Bleo. Had to have two bags of blood on the Bleo day which made for a long day. 3 more weeks till the finish line and boy I cant wait to get there.

                  cant wait till I can look in the mirror and not be greeted by some ghoul like creature who looks like penguin from the batman movies lol. Or I guess I know now how Michael Jackson felt mwahaha.

                  Here we get dexamethasone as the anti sickness during the long weeks and I like that steroid. On Bleo days its Hydrocortisone and I'm not as big a fan of that one I don't think lol. They must work for anti sickness cause I have not taken a single anti sickness med since starting chemo and as for appetite that has been insatiable. I have not been able to stop eating since starting lol although the horrible taste in my mouth is ruining things for me at the moment, but the best way to counter act that is to keep eating lol.

                  Just to get through this last crash/nadir of the 5 day session and I am aiming for plain sailing next three weeks.

                  peace and love to you all

                  ​deekz

                  Comment


                  • #10
                    Originally posted by deekz View Post
                    Hi guys

                    Quick update, looks like going ahead with all 9 doses of Bleo. I tend to see a different onc doc each time I go and Wednesdays doc seemed to be in favour of just cracking on and finishing the doses. Seems quite common here to add missed Bleo doses at the end of the treatment. Did Wednesdays and feeling rough today but that's mainly due to my blood condition and anaemia rather than the Bleo. Had to have two bags of blood on the Bleo day which made for a long day. 3 more weeks till the finish line and boy I cant wait to get there.

                    cant wait till I can look in the mirror and not be greeted by some ghoul like creature who looks like penguin from the batman movies lol. Or I guess I know now how Michael Jackson felt mwahaha.

                    Here we get dexamethasone as the anti sickness during the long weeks and I like that steroid. On Bleo days its Hydrocortisone and I'm not as big a fan of that one I don't think lol. They must work for anti sickness cause I have not taken a single anti sickness med since starting chemo and as for appetite that has been insatiable. I have not been able to stop eating since starting lol although the horrible taste in my mouth is ruining things for me at the moment, but the best way to counter act that is to keep eating lol.

                    Just to get through this last crash/nadir of the 5 day session and I am aiming for plain sailing next three weeks.

                    peace and love to you all

                    ​deekz
                    Have no idea if this works for everyone, but the only way I found to cut through the bad taste was to eat extremely spicy food. The chipotle burrito bowl loaded with hot sauce the Saturday after my first long week may be the best thing ove ever eaten.

                    Comment


                    • #11
                      I don't recall any "bad tastes" but what sounded good to me definitely did change, chocolate was always good, and a few other foods that I rarely eat became favorites. lots of my normal staples just were unappealing.
                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP

                      Comment


                      • #12
                        OK, having the bleomycin at weekly intervals sounds better, but unless my doctor has treated hundred and hundreds of patients and has extensive experience with testicular cancer, then I would ask them to ask a physician that has, to see what their opinions are as I just have not seen the adding on at the end process before. Mentioning BEPx3, I am guessing you are in the UK? If so, Dr. Tom Powles is a great doctor that yours could ask if they are not willing to reach out to the team at Indiana University. It is better to make the best decisions up front.

                        Mike
                        Oct. 2005 felt lump but waited over 7 months.
                        06.15.06 "You have Cancer"
                        06.26.06 Left I/O
                        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                        06.30.06 It's Official - Stage I Seminoma
                        Surveillance...
                        Founded the Testicular Cancer Society
                        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                        Comment


                        • #13
                          I agree with Mike, can't recall adding missed Bleo at the end, normally missed doses are just missed doses. I've always assumed the bleo works to enhance the effects of the long week drugs, so adding it at the end is probably ineffective. Seek expert advise.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            Hi deekz,

                            I was omitted 2 Bleo shots, due to low counts (0 neutrophils, 0.2 lymphocytes, 0.1 monocytes).
                            One was missed in the first cycle and the second in the second cycle. (details in signature about my case and treatment)

                            Beside the problem with extremely low counts, on the 3rd BEP I started to have nosebleeds due to Neupogen shots. Had to take dexamethasone to stop the bleeding.
                            I was not happy about that because I couldn't sleep.

                            A Bleo side effect on me, which left my oncologist perplexed, was that in 3-4 hours after the Bleo administration, I had an urge to take a power nap.

                            ​I read, after the treatment, stories here that Bleo should not be omitted, but maybe my oncologist didn't want to take additional risks.
                            Almost a year and a half after the chemo, I'm safe and sound.

                            Regards.
                            10/18/18 - US by urologist hits me in 3 seconds: you have a tumor!
                            CT scan: all clear except uncertain 6mm lung nodule pre-op: AFP 614, bHGC: 1941, LDH: 203 10/30/18 right I/O; pathology: yolk-sac with pT3 11/26/18 post-op: AFP 29.9, bHCG 2.5, LDH: 159 I ask for IHC: 50% yolk, 45% EC, 5% chorio oncologist decides 3xBEP 12/18/18: after 1xBEP, AFP: 3.42 01/26/19: end 3xBEP with delays in bleomycin; severe neutropenia 03/01/19: first CT after chemo, all clear except a new 12 mm new nodule; the 6mm nodule unchanged 06/08/19: chest CT only - good news, the earlier nodule shrank to 5mm 04/13/20: AFP 3.57, bHCG <0.2, LDH: 160 04/14/20: CT scan: the 5 and 6 mm nodules remain unchanged 05/08/21: CT scan, all good; nodules stay the same

                            Comment


                            • #15
                              My understanding is that Bleo does not affect blood counts so no reason to omit it because they are low....
                              Jan, 1975: Right I/O, followed by RPLND
                              Dec, 2009: Left I/O, followed by 3xBEP

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