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Husband starting 4xEP -- what to expect in the in-between weeks?

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  • Husband starting 4xEP -- what to expect in the in-between weeks?

    Hi everyone. I posted the other day that I thought my husband would be starting radiation (Sloan had booked us an appointment with a radiation oncologist) but after looking at the scans they have placed him at stage 2B and we are starting chemo (4xEP) as the next step. Assuming he starts first of second week of July, he'll be in treatment basically the whole summer. We are trying to figure out if we can still give the kids (ages 8 and 12) any kind of a summer vacation.

    For those who have had 4xEP, how sick and tired were you in between the chemo infusion weeks? If we were to plan some kind of vacation for week three of cycles 2 or 3, do you think that would be at all doable? I'm thinking some kind of house or resort by a lake or the ocean where the kids can run around and my husband can just rest if necessary. But I'm reading here about some of the side effects and I'm wondering if even that will just be too much for him.

    Thanks so much for your advice and support. I know the vacation stuff is just not the most important thing right now, but we've had to cancel some major travel plans, the kids are disappointed, and we'd really like to give them something close to a normal childhood summer.

  • #2
    Hi there, so sorry you and your family are going through this. I know how hard it is to keep it all together for the kids and your husband while you feel like you are drowning as well.

    My husband had only one round or chemo but I can tell you it was rough. His experience with 1XBEP was considered very easy and successful and he still could barely function. Plus his immune system was suppressed as well so the less he was around people and the public the better. I can't imagine that any sort of travel would have been possible or fun for anyone.

    Everyone deals with it in different ways but I would say it would be best to skip making plans this year. Just keep the kids occupied and get through this the best you can.

    Next year you can plan a fantastic vacation to celebrate beating cancer
    2/7/18- Husband diagnosed
    2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
    3/12/18-4/1/18 Adjuvant BEPx1
    4/12/19- ONE YEAR ALL CLEAR
    4/2020- Two years all clear
    4/2021- Three years all clear
    4/2022- four years all clear

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    • #3
      I went through 4EP two years ago starting the second week of July. I was able to work construction after round 1. I wasn't able to work in between the next rounds. But I still drove and got around doing what I needed to do. And lounging around at the cottage was pretty easy too. I would say go for it as long as not too much is expected of your husband. The side effects are cumulative so it might be better if you can swing it after round 2. We all handle it differently but my personal experience was that it wasn't as bad as I had imagined it to be. Having the right meds helped with controlling nausea and getting a good sleep. And I bet it would probably help you and the kids tremendously even if you have to shoulder most of the work.

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      • #4
        Week 3 cycle 1 he should be 95%. Week 3 of cycle 2 he probably can go as long as the only expectation of him is to lounge around. I would not do it during cycle 3 or 4. Cycle 4 really took all my energy, was pretty much a couch potato for a couple weeks then.
        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!

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        • #5
          Sorry to hear you're going through all this now!! I had BEPx3, but it's probably fairly similar. I know it's not everyone's experience, but for me later cycles were easier than round 1 because I knew what to expect and how to manage my energy, so a holiday is doable, if you can have rest when you need to! I would stay somewhere not far from a hospital, just in case something is off.
          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

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          • #6
            I want to add to what Joe said: The problem with the "off" weeks is that the immune system gets very weak. As Joe said; I would consider being in easy reach of a hospital at that time. Infections at that time get very serious very fast.

            Other than that point; the "off" weeks in Cycle 1 should be the easiest. Cycle 2 a bit harder. No way could I have done anything in Cycle 3. I did not have EP, so I can't vouch for Cycle 4...but I imagine ditto for Cycle 3.

            I think a vacation is doable, but you may want to consider it only in the 1st half of the treatments.

            Also; since he has not yet started chemo, you don't know how he will tolerate it. So if you do make plans, just be ready/prepared to suddenly change them if need be.

            - Mat
            March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
            March 13th: Left IO 100% Classic Seminoma
            6.3 x 5.1 x 3.8 cm, no invasion of anything
            LDH never fully normalized
            Stage: IS
            Watchful Waiting
            May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
            May 12th: started 3xBEP
            Neupogen during Cycle 2 and 3
            July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
            August 4th: Post Chemo CT/PET scan
            September 4th: Port removed
            Jan 9th 2019: 4.5 YEARS ALL CLEAR !

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            • #7
              Thank you everyone for your advice and input. It's been very helpful. Mat and Joe you mentioned the importance of being near a hospital -- can you say more about the type of situations where we might need a hospital near by, and how near the hospital should ideally be?

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              • #8
                Almost always the week after chemo the blood counts drop leading to Neutropenia. It is during this time that patients can develop fevers- this is go to ER type of situation. When Neutropenic it is best to avoid uncooked seafood, most raw veggies, and some raw fruits.
                I would definitely plan for closer to cycle 1. Be flexible.
                Son Grant
                dx 12/21/16 at age 17

                BEP x3
                Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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                • #9
                  I'm not so certain how important it is to be close to a facility. Obviously, you don't want to be several hours away from help, but honestly I'd estimate that less than 2% have reported in here that they actually need that sort of help.

                  My suggestion is to have refundable plans for week 3. By then you will be able to gauge how he's dealing with chemo, but won't be getting into the extra fatigue that most get with additional courses. As has been said, he should avoid crowds, & so should you & the kids.Odds are you will be in close quarters & unable to isolate him from a sick family member.

                  Expect him to need a lot of rest & low activity. I certainly was not feeling like doing much during 3xBEP. Be prepared to take the kids out for fun & let him rest. However, everyone is different.

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

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                  • #10
                    My Oncologist told me to call her office immediately if my temp got over 100.5. At that point they would take action such as tylenol or something. If the temp does not get below 100.5 I was told to go to the nearest hospital immediately.

                    If I recall; it's in the second week of each cycle when the immune system is at its weakest. So the 3rd week would be the best week to go for a vaca.

                    - Matt
                    March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                    March 13th: Left IO 100% Classic Seminoma
                    6.3 x 5.1 x 3.8 cm, no invasion of anything
                    LDH never fully normalized
                    Stage: IS
                    Watchful Waiting
                    May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                    May 12th: started 3xBEP
                    Neupogen during Cycle 2 and 3
                    July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                    August 4th: Post Chemo CT/PET scan
                    September 4th: Port removed
                    Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                    Comment

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