Starting 3xBEP Next week

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  • surfhb
    Registered User
    • Jul 2013
    • 176

    #16
    The only way you will be able to know how your lungs are functioning is with a pulamary lung function test. I’m an active ocean lifeguard, surfer and swimmer. The bleo scared me to death but I was able to look at the numbers and I never dropped one bit. My lungs are actually slightly stronger right now.

    I feel staying active during chemo is one of the most important things you can do. Some days you really just don’t feel like doing it but for me it was more mental over physical. I would jog/run or ride my bike to my favorite vegetable juice bar after chemo every day. Get the lungs moving and have a healthy drink after. Try and drink as much water as possible too. I would also request extra hydration IV bags too on the long weeks. It forces you to stay almost an extra hour after chemo is complete and sucks because you want to leave now but I figured it was for the best for my health.
    Last edited by surfhb; 02-10-19, 11:00 PM.

    Comment

    • biwi
      Registered User
      • Jun 2015
      • 861

      #17
      I definitely had hiccups as well, and I had 4xEP. I think they are pretty common.
      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!
      10/22/19: all clears up to this date!
      4/8/24: stopped monitoring something like 2 years ago, still all clear!

      Comment

      • Goodday
        Registered User
        • Jan 2019
        • 19

        #18
        Yes, I do get the hour of ivy on long days due to the cisplatin. I do now hear the ringing in my ears, loss of taste and losing appetite. I did myself no favors by eating spicy food last week thinking that I'd be good. Some slight irritation has been a thing now but lesson learned. No queasiness as of yet. All things considered, all is well. I know this particular week I should be dropping in cell counts so wearing a surgical is somewhat of important. Anyone else going through treatment in the first cycle?

        One slight oversight by my onc was the mention of a port. I found out about it the week before treatment. I wish I had it installed prior. I should have it installed prior to round 2.
        12/14/2018- initial diagnosis cancer left testis
        12/18/2018-informed that it spread to my lower back
        12/27/2018- i/o left testis
        01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
        1/08/2019-Oncologist recommends 3xBEP
        2/4/2019-Treatment begins
        4/1/2019-last day of treatment
        6/1/2019-hope to be in remission

        Comment

        • ColoradoGuy
          Registered User
          • Jul 2018
          • 5

          #19
          Hey Goodday,

          I am going through 1st cycle now, on day 5 right now.

          So far not too bad. I feel change in appetite, it is hard to start to eat, but once I manage to take a first bite it is easier. I drink A LOT, and go to restroom all the time.

          I do some small house work (trash, dishes) it helps me to feel useful. Also I walk for an hour outside, that really helps.

          Sorry to hear your doc forgot about port. It is easier with it. Keep us posted on how is it going with you.

          Comment

          • MilanD
            Registered User
            • Aug 2018
            • 26

            #20
            I started 3xBEP on Feb 4th. First week I did get queasy little, took pill and it went away. However ocasionally I got light ringing in ears for 5 seconds and it goes away. Loss of apetite and during long week I felt fatigue. Slept a lot. Therapy 8am-1pm, lunch and then 3 hour nap. Little bit of work and to bed again. Next week (short week) I felt better, bleo put me down just little, but it may be tylenol and benadryl. More days pass long week better I feel. All in all is not as bad as I was worry it would be. But I know this is only first cycle...

            Comment

            • SoManyQuestions
              Registered User
              • Aug 2018
              • 7

              #21
              Regarding bleo and difficulty taking a deep breath.... I just finished BEPx3 last week. I would describe my bleo / lung symptoms similarly (i.e. noticeable difficulty in taking a deep breath). I noticed this towards the end of cycle one and it gradually worsened towards the end of treatment. Another way I would describe it is like the feeling you get when you're trying to breathe in cold water. No symptoms at rest. Towards and of treatment very minimal cardiovascular exercise, such as jogging 1 block, was exhausting.

              My understanding is that true bleomycin pulmonary toxicity is very dose dependent, which means it would be ridiculously unlikely for your symptoms to be the concerning type of chronic bleomycin pulmonary toxicity (i.e. pulmonary fibrosis) after only a single dose. This toxicicty takes a higher dose and more than 1 week to develop... assuming you don't have significant risk factors (underlying lung disease, history of smoking, etc.)

              Of course... I'd discuss with your doc.

              Comment

              • Goodday
                Registered User
                • Jan 2019
                • 19

                #22
                Yesterday was my last bleo day for this round. I generally have not had a bad incident with bleo after the first day of therapy. Just hiccups here and there. My side effects have subsided with the only new development this past weekend (days 14-15) of hair loss. I was expecting that this weekend just from reading on this forum of when it tends to happen.

                My blood work was taken last week since my port will be installed next week, during the middle of my long week. Fun. My wbc and rbc were relatively normal and my blood can coagulate in 9 seconds? So I am not too concerned with those numbers yet. I will be having the same blood work done this week to begin round 2.

                While I did get my blood panel results, I was curious to see my beta hcg. I was not concerned with the afp counts (8.1) since my cancer is seminoma. After surgery, my beta hcg dropped from 150-75. I had my murse go over the results and mentioned that my beta hcg jumped to 238. I was told that the elevated jump most likely has to do with the cancer being aggravated with the chemo. One bit of information you should know, is that I had thc infused edibles (with my onc being informed about it) a day or two before my blood test. I have read that this can jumble the hcg number.. Anywho, I see my onc on Thursday for follow-up.

                I am wondering if anyone has had this experience before. Has anyone had their hcg jump from a lower level after surgery and during chemo without the use of thc? I'm not panicking about this as this is a 3 round cycle and I am wrapping round 1 this Friday.

                I hope everyone undergoing treatment is fairing well.

                12/14/2018- initial diagnosis cancer left testis
                12/18/2018-informed that it spread to my lower back
                12/27/2018- i/o left testis
                01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
                1/08/2019-Oncologist recommends 3xBEP
                2/4/2019-Treatment begins
                4/1/2019-last day of treatment
                6/1/2019-hope to be in remission

                Comment

                • Goodday
                  Registered User
                  • Jan 2019
                  • 19

                  #23
                  Yesterday was my last bleo day for this round. I generally have not had a bad incident with bleo after the first day of therapy. Just hiccups here and there. My side effects have subsided with the only new development this past weekend (days 14-15) of hair loss. I was expecting that this weekend just from reading on this forum of when it tends to happen.

                  My blood work was taken last week since my port will be installed next week, during the middle of my long week. Fun. My wbc and rbc were relatively normal and my blood can coagulate in 9 seconds? So I am not too concerned with those numbers yet. I will be having the same blood work done this week to begin round 2.

                  While I did get my blood panel results, I was curious to see my beta hcg. I was not concerned with the afp counts (8.1) since my cancer is seminoma. After surgery, my beta hcg dropped from 150-75. I had my murse go over the results and mentioned that my beta hcg jumped to 238. I was told that the elevated jump most likely has to do with the cancer being aggravated with the chemo. One bit of information you should know, is that I had thc infused edibles (with my onc being informed about it) a day or two before my blood test. I have read that this can jumble the hcg number.. Anywho, I see my onc on Thursday for follow-up.

                  I am wondering if anyone has had this experience before. Has anyone had their hcg jump from a lower level after surgery and during chemo without the use of thc? I'm not panicking about this as this is a 3 round cycle and I am wrapping round 1 this Friday.

                  I hope everyone undergoing treatment is fairing well.

                  12/14/2018- initial diagnosis cancer left testis
                  12/18/2018-informed that it spread to my lower back
                  12/27/2018- i/o left testis
                  01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
                  1/08/2019-Oncologist recommends 3xBEP
                  2/4/2019-Treatment begins
                  4/1/2019-last day of treatment
                  6/1/2019-hope to be in remission

                  Comment

                  • vxmike
                    Registered User
                    • Feb 2019
                    • 22

                    #24
                    Originally posted by Davepet View Post
                    Hiccups during BEP are not uncommon, No idea if it is the Bleo, Cisplatin or etoposide that causes this. Of the three drugs Bleo is actually the least of them in terms of side effects. Very few have any lung problems after taking it. "Shake & bake" is a much- more common reaction, normally a few hours after a bleo- only week. I had that once & got a tylenol before treatment after that & it didn't happen again
                    I’m on day 4 on my first cycle of BEPx4. Hiccups are my worst side effect thus far. Zero the first day then bad in the first evening after Bleo. Better after day 3 but still present. Not sure if it’s the Bleo or just the cumulative effect.

                    Comment

                    • wjonw
                      Registered User
                      • Aug 2018
                      • 31

                      #25
                      Hi All,

                      I am currently at week 2 of the 2nd cycle and thought i'd share.

                      My first cycle was overall pretty easy, i felt tired for a day after the treatment but was still able to walk around, get up and eat.

                      The first week of my second cycle was definitely more intense and the cumulative impact was felt. By this i mean that after day 5 of week 1, i was pretty much exhausted until Monday morning (3 days to recover).

                      I encourage you to just take it easy if this happens and just listen to your body. For my first cycle, i was so concentrated on eating right and moving a bit. BY the 2nd cycle i was eating pizza and comfort food as it was the only thing i could tolerate. I also switched to gatorade since water was unbearable. Just like you, hiccups are super common but i didnt feel any changes in breathing, just quicker to be tired and lay.

                      Anyways hope this helps. As i said, im week 2 of 2nd cycle now and feeling much better. Those first weeks are just tough but its all towards getting better!



                      Comment

                      • Goodday
                        Registered User
                        • Jan 2019
                        • 19

                        #26
                        Thanks for sharing!

                        Small update: I got a call from my onc giving me a heads up that my white blood cell count was low. I was surprised because last week, they were within range but I suppose this was a delayed side effect. Anywho, my onc would like to continue treatment on Monday. From the first time I met him and went over treatment options, he did mention this being a possibility. I feel confident with this decision. Has anyone been in a similar position?
                        12/14/2018- initial diagnosis cancer left testis
                        12/18/2018-informed that it spread to my lower back
                        12/27/2018- i/o left testis
                        01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
                        1/08/2019-Oncologist recommends 3xBEP
                        2/4/2019-Treatment begins
                        4/1/2019-last day of treatment
                        6/1/2019-hope to be in remission

                        Comment

                        • Ryan Bi
                          Registered User
                          • Jul 2018
                          • 126

                          #27
                          Yes, my son met the same situation as you meet. His first oncologist wanted to begin the cycle 2 treatment one week later, I asked folks here, I got immediately answers, also meantime I contacted Dr.Einhorn, he said with even with low ANC, we should continue cycle 2 in time. We finally could start treatment from 3pm at the first day of cycle 2.

                          The cells count change very fast, sometimes it raised to double only in Next day.

                          Just keep yourself far to the crowd, wash your hand, it won't be a trouble.

                          Good luck to you!

                          Amy, Ran’s mum
                          Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                          08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

                          Comment

                          • Goodday
                            Registered User
                            • Jan 2019
                            • 19

                            #28
                            Thank you. So far, so good. The only change now is that the procedure for the port is pretty much out of the question and will be poked each time.
                            12/14/2018- initial diagnosis cancer left testis
                            12/18/2018-informed that it spread to my lower back
                            12/27/2018- i/o left testis
                            01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
                            1/08/2019-Oncologist recommends 3xBEP
                            2/4/2019-Treatment begins
                            4/1/2019-last day of treatment
                            6/1/2019-hope to be in remission

                            Comment

                            • dcalandrelli
                              Registered User
                              • Apr 2017
                              • 288

                              #29
                              I have had some similarities with a blood test. My AFP was normal pre chemo and jumped from 5 to 12 to 19 after chemo. Within a month it was down to 10. I don’t think it’s unheard of for chemo to temporarily raise blood tests as the chemo kills cells.
                              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! 6/08/23 All clears up to here! 6 years all clear! Son born September 2022, conceived naturally!

                              Comment

                              • MilanD
                                Registered User
                                • Aug 2018
                                • 26

                                #30
                                Well I am in second cycle long week now. It is harder for me. More fatigue, more side effects, naseutic. My WBC were low but my ANC are alert low (0.44). My Oncologist wanted to delay treatment for week on Monday. He said I should recover within week and continue with treatment. Email Dr Einhorn and he said he would continue with treatment. Contacted my Oncologist but it was 4pm and they would not provide treatment so scheduled for Tue, one day delay Fri scheduled to Mon and BLeo instead of Tue to Wed. As Dr Einhorn predicted my ANC shoot up on Tue to 0.97, which is only low. My onco also want to do Neupogen on 2 week and 3 week of 2nd cycle. Well Dr Einhorn did not recommend Neupogen... Should I request to get treatment on Saturday instead of Monday, I already asked and they told me they are closed. Maybe in hospital?

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