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Staged at IIB, 3x BEP Starts on 6/29

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  • Staged at IIB, 3x BEP Starts on 6/29

    Hi All,

    I first want to say this forum and all of your stories have really helped me cope with everything that I would otherwise feel overwhelmed with.

    Today my medical oncologist staged me at IIB and recommends we start BEP on 6/29. Looks like this Summer's activities will look a little different than most which normally include: mountaineering, hiking, backpacking, rock climbing, some desk jockying and plenty of fresh air.

    I would greatly appreciate your thoughts on the best ways to make it through the treatment, how do deal with work/job and your experiences with fatigue and how that affected your ability to get excercise. I'm hoping to still get out and stay active but I know I don't want to push it and make things worse.

    All and any thoughts are welcome.

    Thanks!

    Best,
    Cameron
    5/1 - Minor swelling and pressure

    5/9 - Back pain and swelling

    5/18 -R. TC Diagnosis, No noted enlarged Lymph Nodes on CT report. Report notes (3) enlarged, retroperitoneal, periaortic masses of a fluid density. AFP: ~190, bHG: ~210

    5/26 - Right I/O

    6/10 - Path: 4cm, Mixed GCT with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma <40%; seminoma <1%). LVI present.

    6/17 - AFP: 205, bHCG: 9. More scans on 6/24. Looks like BEPx3.

  • #2
    Hi Cameron. I've also read your messages on the other thread you started. It looks like things are moving fast but also smooth on your end too. I had my chemo in the summer of 2018. Now I will have RPLND again in another summer. My partner used to tell me that despite how difficult things may seem and get, starting with orchiectomy, it is a journey to hopefully get better. It sounds simple but it helped me so I wanted to pass it here. Seeing people here resuming their lives also helped me in handling the stress. Even it has been only two years for me, it feels longer in a good sense and fuller after this experience.

    I didn't have to work during my chemo so it might be better for others to drop a few words about it. For me first and second cycles were quite manageable --I felt very tired during the third. I got very sleepy after first weeks of each cycle since you get infusions 5 days back to back. I slept very much the weekends following those first weeks. For the second and thirds weeks of the cycles, I felt very close to my pre-chemo or normal self. I went out for walks, drove my car around, enjoyed some TV shows, tried to cook my favorite dishes etc. About exercise, again, I hadn't done much except those small walks. It might be a good idea in general to avoid possible injuries during times like this. I believe you should feel if you have the stamina to exercise etc. I also remember I did read some stuff online about exercise but you might also discuss this with your oncologists. I tried to be nice to myself overall and if I didn't feel like doing anything, I didn't try hard to pretend things were normal.

    If you are going to be alone during this process, it might be a good idea to have somethings to be prepared quickly. I also familiarized myself to side effects of BEP, so it helped me better communicate with the nurses and oncologists and not to panic too. I didn't have any upset stomach or nausea but I heard before that people get prescribed somethings for those too. I got tinnitus and neuropathy. I didn't have a port installed but it might be a good idea to have one otherwise you are exposed to unnecessary pain. I was also amazed how fast body recovers once the chemo is over.

    I would be happy to check here and answer more specific questions if you have. But I should also note that everyone experiences this very differently. Good luck!

    Anil
    March-April 2018: Lump and discomfort.
    May 2018: Right I/O
    Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
    Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
    Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
    Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
    June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
    Post-chemo: Markers normal, scans clean. Moving to US.
    September 2018-May 2020: Markers and scans clean
    May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
    June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

    Comment


    • #3
      Thanks Anil,

      I appreciate the words of experience. Indeed, I will get through it and it helps that my partner is here to support me along the way. It would like be a little different having to stick this out alone, especially during COVID and the degree of shelter in place we are experiencing here in California. It has definitely been a little bit of a quick ride to treatment. I've been persistent with my care team to learn as much as we can as soon as we can about my staging so that we can begin treatment, if necessary, as soon as possible.

      It really seems as though everyone reacts to BEP differently. My oncologist seemed to suggest I should have no problem cycles 1 and 2 with some definite fatigue during week 1 and 2 of cycle 3. I'm sort of planning that with work and am coordinating PTO and a little short term disabaikity just in case I need the time to recover. My goal is to make sure that I don't get an infection during treatment that otherwise makes a somewhat uneventful treatment into a rather exciting one.

      Are you planning on getting the RPLND this summer? I'm hoping that the lymph nodes in my case don't contain Teratoma, based upon some suspicion from the pathology, we won't know until about a month after Chemo. I wish you a speedy recovery from your upcoming surgery. Keep me posted on how it goes and what form of RPLND you are able to go for. I'm definitely curious about the benefits of robotic assistend RPLNDs, although I know this is not common practice.
      Last edited by cram; 06-21-20, 10:19 PM.
      5/1 - Minor swelling and pressure

      5/9 - Back pain and swelling

      5/18 -R. TC Diagnosis, No noted enlarged Lymph Nodes on CT report. Report notes (3) enlarged, retroperitoneal, periaortic masses of a fluid density. AFP: ~190, bHG: ~210

      5/26 - Right I/O

      6/10 - Path: 4cm, Mixed GCT with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma <40%; seminoma <1%). LVI present.

      6/17 - AFP: 205, bHCG: 9. More scans on 6/24. Looks like BEPx3.

      Comment


      • #4
        Hi Cram!

        I'm Jonathan. Like you, and many others here, I also had IIB pure seminoma and went through 3BEP from Jan-March 2019. Over a year after, I am still in the clear and you will be also, this is just a hard time to go through. Try to remember to always keep your mind on the fact you will get better and are killing this disease. I'm also in Cali (LA) so here if you ever want to talk!

        A few suggestions/personal experience comments, again this was good for me and we are all super different so this is just food for thought !
        1. I decided to buzz my hair a week before starting treatment, not fully but pretty close to it. You'll start hair loss a few weeks into the treatment and even when prepared it can be an emotional shock. It was just easier for me to get used to a buzz look and then when I started losing it, I used the same buzzer I bought early on to clean up and pull the bald look.

        2. Cycle 1 is pretty "okay", I was still walking daily during it and my moods hadn't fully darkened yet. I did, however, feel SOO bloated after the first few days of the first week, I must've added 7 pounds of liquid weight overnight. That was really uncomfortable, so I advise to drink fluids as you go through to pee out the surplus. By mid-cycle 2, the walks were too much, plus, I felt uncomfortable. I could do some walks during the Bleo weeks but didn't push as much as I did earlier on. Exercise is great though, so do as you can.

        3. Throughout the process, eating changes. My first few weeks, i almost thought i could use this as a way to get into a healthier lifestyle lol. My first cycle, I was eating well but I did force to do several small meals instead of 3 main ones. However, chemo hits your hunger capacity so then you really need to force yourself to eat whatever sounds good. Obviously try to get healthy stuff in you since that goes a long way and there are a lot of books about what is good for you. However, i remember that my oncologists looked at me one day and said "dude cut the LA lifestyle, just eat what sounds good and move on". He was right, you need energy, so eat. I was fortunate to have a great partner who would cook wtv sounded good as fast as possible since nausea can curb appetite pretty quickly. SInce you are in cali, you can also think about THC if you want (edibles). It helped me at nights, to boost my mood and give me some hunger. Honestly, it's the time i felt the most like my old self. However, talk to your onc first, always!!!!!

        4. I had mild neuropathy, so that didn't bother me but tinnitus was more severe and annoying. I found out the less I slept the more sever it was, so try to sleep. I was going to bed by 6 pm during mid-cycle 2, couldn't stay up much more.

        5. I was lucky, my work let me work from home. During this whole process, it's very hard to see the world moving forward while you are on "abeyance", so having work was good for me. I really did the bare minimum, but it was nice to have some normalcy. HOWEVER i don't advise for you to try and work hard and keep up your lifestyle, this is not the time for that. You are going through treatment and need to have the energy for this big battle, don't sweat the small stuff (during this time, work is the small stuff), this is your current obstacle and challenge so always keep focus on that.

        Again hang in there, and let me know if you ever want to talk. This community is amazing, the people and support are truly exceptional. I also learned that I am not in control during this time and that it is okay to lean on others for support and help. My partner and my mother were my support and honestly, I had so much guilt putting them through this but they never felt that way. SImilarly for the nurses and the medical team around you, there is a feeling that you are not alone, even if you feel that way. Yes, you are the one in the chair and need to be strong as you can, but knowing ppl are championing you around gives even more purpose. Chemo/Cancer is a physical battle, but also an emotional one, and it took me time for me to understand that it is okay for me to be vulnerable during this time, and even today.

        Good luck!

        Comment


        • #5
          Originally posted by cram View Post
          Thanks Anil,

          I appreciate the words of experience. Indeed, I will get through it and it helps that my partner is here to support me along the way. It would like be a little different having to stick this out alone, especially during COVID and the degree of shelter in place we are experiencing here in California. It has definitely been a little bit of a quick ride to treatment. I've been persistent with my care team to learn as much as we can as soon as we can about my staging so that we can begin treatment, if necessary, as soon as possible.

          It really seems as though everyone reacts to BEP differently. My oncologist seemed to suggest I should have no problem cycles 1 and 2 with some definite fatigue during week 1 and 2 of cycle 3. I'm sort of planning that with work and am coordinating PTO and a little short term disabaikity just in case I need the time to recover. My goal is to make sure that I don't get an infection during treatment that otherwise makes a somewhat uneventful treatment into a rather exciting one.

          Are you planning on getting the RPLND this summer? I'm hoping that the lymph nodes in my case don't contain Teratoma, based upon some suspicion from the pathology, we won't know until about a month after Chemo. I wish you a speedy recovery from your upcoming surgery. Keep me posted on how it goes and what form of RPLND you are able to go for. I'm definitely curious about the benefits of robotic assistend RPLNDs, although I know this is not common practice.
          Yes, I will have my RPLND next week - 6/29 in Boston. Thanks for the wishes! I decided to go with open RPLND. I had this conversation with several different surgeons and among the choices I have the open procedure would make me feel better in the long run. I am sure there are people who preferred/had robotic RPLNDs. Teratoma component in my original pathology was high I guess and this lymph node appeared in my scans 21 months after the chemo ended. I will definitely post updates especially under the topic I started. Be well!
          March-April 2018: Lump and discomfort.
          May 2018: Right I/O
          Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
          Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
          Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
          Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
          June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
          Post-chemo: Markers normal, scans clean. Moving to US.
          September 2018-May 2020: Markers and scans clean
          May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
          June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

          Comment


          • #6
            Hey Cameron, sounds like you've got things under control! You're right, everyone does react differently to BEPx3, I actually found it harder for the first cycle - this is when you might figure out the ups and downs, how it affects you, and it certainly made it easier for rounds two and three because I knew what to expect!

            What helped me a lot was going on a nightly walk, no matter how bad I felt, it helped me to get back on track. I started exercising a few months after finishing chemo (put lots of weight on during that time) and have not only lost weight, but I am now in the best shape of my life!! I've learned a lot from personalised advice from exercise physiologists - check out two interviews on my Simplify Cancer Podcast here and here.
            July 2016 - Left I/O
            December 2016 - BEPx3
            3 years all clear + baby after TC!

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