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  • Starting 3xBEP Next week

    Hi there,

    I was diagnosed with Stage IIB seminoma. The cancer managed to spread to my lower back. I'm here looking for guidance in terms of how folks handle the stresses and anxiety of going through chemo. I am bit scared, but I'm sure that is normal. My biggest concern is catching a fever, having the Bleo affect my lungs (although I over exceeded in some of the pulmonary function tests) and just overall staying positive. While I think I can handle the fatigue and maybe some of the nausea, what do folks do in terms of just recovery such as take vitamins, teas, etc.. I will be going to City of Hope out here in Southern California, which I'm a grateful for. I suppose I am looking for support in getting through this. Any help is much appreciated.
    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

  • #2
    Well, I recently found out that my lung function test showed I had COPD, but my onc didn't tell me beore BEPx3. I recovered quite well & was able to do frequent 4-5 mile hikes in the mountains where I lived after a bit of work getting back in shape, so while Bleo *can* affect lungs seems like the worry is considerably overblown. Fatigue was my biggest problem, nausea was just queasy at times everybody's different. You will feel like cr@p at times, but you get through it. Eat whatever you feel sounds good to you, I kept my same vitamin rituals & was not advised to change them and am all clear closing in on 9 years now. Don't sweat it, it's not fun, but you deal with it because you have to. When you get to the other end, you will understand.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      Hey there.

      I have just finished cycle 1. And honestly it wasn't nearly as bad as I thought it would be. A little tired but not sleepy tired. Bloated for sure but that faded quickly once I stopped meds on day 8. I got a bit of a runny nose from my son on day 10 but I was actually fine.

      As Davepot says, if you can stay active it really does help. As much for your mental well being as anything else.

      Of course I expect it to be harder with each round but right now, I feel 8/10. Please don't be scared, it is not worth being afraid of and expending your energies on. This is going to cure you so just look at it that way.

      I would wish you luck but you won't need it!

      Comment


      • #4
        Thank you both to Samwise and Davepet (in no particular order). I really appreciate the feedback from both of you.

        Samwise, how old is your son? I have a 6 month old and well, it tears me apart that I may not be able to hold him while I have the chemo in me. How do you manage?
        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


        • #5
          My son will be 4 next week.

          I'm not going to lie, it's not much fun. Plus I am hyper paranoid about infection so I tried to stay away from him in the second week because that's when your immune system tends to bottom out.

          But you have to go with what you feel. There is no right or wrong and no rules. And remember this is only temporary. They won't even remember in a few years anyway and you're going through this so that you can grow old watching them get older.

          My best advice to you is not to overthink it. Take each day as it comes and be thankful for the fact that our cancers are curable. You are likely to meet some wonderfully inspiring people who aren't so lucky.

          Comment


          • #6
            Hi Goodday, I am in very similar situation. I am starting 3xBEP on Monday Feb 4th as well, provided my lunch pulmonary test end well.

            Comment


            • #7
              Goodday, I feel your pain - my son was 3 at the time of chemo and it was so hard to be away in the hospital far away (Melbourne is big).

              But this will pass and you will have plenty of time to savor every moment with your kid!!!
              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
              First Oncologist Visit Checklist
              Simplify Cancer Podcast

              Comment


              • #8
                Good luck, MilanD, hope it goes well! As long as they keep checking your lungs, you're
                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
                First Oncologist Visit Checklist
                Simplify Cancer Podcast

                Comment


                • #9
                  Thank you all for the feedback on what to expect and such. I never thought I'd find a community that would be so supportive.

                  Hi MilanD, Let's keep in touch in terms of support. I know I will be here often for support. I had my chemo class today and well it was what I expected. I wish you smooth process.
                  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


                  • #10
                    Hi Goodday, sure thing, let'stand stay in touch. I had class as well on Friday. It went really quick (30 minutes). Only thing I was surprised was that my oncologist prescribed 4xBEP. I haven't seen him, so couldn't ask him about that, but Dr. Einhorn told me that 4th cycle BEP is pointless. Also on treatment plan they calculated wrong BSA, so I have to have that corrected before treatment. As well as they forget to schedule me on Pulmonary Function Test. Which I had to call my urologist and have it scheduled same day (nervous wreck). I had CT on 1/22 and on 1/25 when I had appointment with Oncologist he wanted to do another PET/CT to make sure it is cancer or that it doesn't spread(?). Einhorn and my Urologist (Testicular Cancer Center of Excellence professor) both told me no value of doing it since it is obvious from CT scan what is going on and need to get 3xBEP. When I told them I will not do PET/CT on Wednesday since Einhorn and my urologist both told me there is no value, I found that I would not have PFT test done on Friday, but they assured me it will be before treatment. On Friday they told me soonest they can do is Tuesday and that I need to delay treatment. Thanks for my Urologist I had PFT test done on Friday. What a nightmare... Really felt little like I have been neglected by that oncologist office.

                    July 24th, 2018 Blood : HCG 45, Afp 26
                    July 25th, 2018 CT Scan: No evidence of metastatic disease
                    July 31st, 2018 left testicle orchiectomy, Stage 1B Testicular Cancer 3.5cm tumor size (3.5cmx2.5cmx2cm), pure embryonal carcinoma
                    August 6th, 2018: HCG 2, Afp 8.9
                    August 9th, 2018: HCG 1, Afp 8.5
                    August 23rd, 2018: HCG 1, Afp 6.2
                    September 21st, 2018: HCG 2, Afp 4.5
                    October 17th, 2018: CT Scan : No evidence of metastatic disease, Left Paraaortic node 9mm, was 8mm
                    November 27th, 2018: HCG:3, Afp 3.9
                    December 19th, 2018: HCG:3, Afp 4.6
                    January 21st, 2019: HCG: 1, Afp 4.1
                    January 22nd, 2019: CT Scan : Lymph nodes now measuring 2.1cm and 1.4cm suspicious for nodal metastatic disease. Previously these lymph nodes measured less than 1cm.
                    Last edited by MilanD; 02-02-19, 08:41 AM.

                    Comment


                    • #11
                      MikanD,
                      Why are they insisting on a PET scan? PET is not recommmended forEC since it gives unreliable results. In the end, it is your body, I'd push to star chemo Monday & skip the PET.

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

                      Comment


                      • #12
                        Have no clue why did they want to do PET scan... On top of it it would another scan just week after CT scan. since "PET scans are not generally used for testicular cancer. When PET scans are done, they are usually combined with a CT scan (see above), called a PET-CT scan. However, you may hear your doctor refer to this procedure just as a PET scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body. Studies of PET scans have shown that they are not helpful for diagnosing or staging testicular cancer and should not be used at these times. However, they can be helpful for men with metastatic pure seminoma that does not entirely disappear after chemotherapy. In such instances, the PET scan should not be done until at least 6 weeks after chemotherapy ends."

                        Comment


                        • #13
                          Most of my scans post chemo ( & one prior) were PET/CT, so I know all about them the PET portion measures cellular uptake of the dye, but does not produce quality images of the organs, so they overlay a conventional CT by computer so they can see exactly what organs are taking the dye up.

                          I had a mixed tumor though,& the PET/CT prior to CT did indeed light up,so it provided some confidence going forward, since the CT-only scan was a bit vague. With pure EC, my understanding is that false positives & negatives are fairly common, so why expose yourself to the radiation? It's not like if it doesn't light up you can avoid chem, your CT is quite clear about that. I would put my foot down & refuse it, insist on starting chemo Monday & if needed, compromise & get one after chemo is started. JMHO.


                          Last edited by Davepet; 02-03-19, 11:33 PM.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            Quick update: I had my first week of treatment and it's quite the experience. I have a question for folks that have gone through the Bleo. Did any of you experience any kind of issues with their lungs after their first session? I felt myself having trouble keeping a deep breath. No shortness of breath but I'm also thinking that maybe the room I was staying in was brisk. Per my nurse, she said it's normal to have this. After I spoke to her, I did see my Onc and informed him of what I was feeling. He said that I shouldn't have been feeling anything in my lungs. I find myself having hiccups as well. I have my next treatment of bleo tomorrow. Any one had similar incidents?
                            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


                            • #15
                              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
                              Jan, 1975: Right I/O, followed by RPLND
                              Dec, 2009: Left I/O, followed by 3xBEP

                              Comment

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