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My story, post-orchiectomy

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  • #16
    Hi ChrisNY, sorry you’re here, but glad that you have a plan and are moving ahead with it.

    Wrt to hair, mine started falling out rapidly after the first cycle of EP in the days before the second cycle. When I looked in the mirror it seemed like it was thinning out evenly so I figured I would let it run its course. After the second cycle when I started to get some energy back I looked at the back of my head with a hand mirror and it was much different than I had thought, patchy and weird. So I got straight to business and shaved it all off. It’s much lower maintenance now! I haven’t had to shave my face or head for a month. No hair all over the house. But this may not apply to you at all with 1xBEP. Seems like people respond differently
    6-20-2014 - HCG 43 mIU/mL 6-27-2014 - pathology: 3.6 x 3 x 2.3 cm seminoma, classic type 8-15-2014 - 1x carboplatin 1-15-2021 - recurrent seminoma with distant metastasis, HCG normal 2-8-2021 started 4xEP 3-29-2021 switched to 2xEC after 2xEP

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    • #17
      Hi all,

      Just wanted to post an update. I’m currently on Day 11 of BEP. All things considered, I’m tolerating the chemo, though I did want to ask:

      Will the vein in my arm that took the Bleo recover? For the last week, it’s hardened, sore, and far less pronounced. An ice pack has offered only minimal relief. My doctor said the vein may just need time to heal, but would be interested to hear any of your stories with this side effect.

      Here’s a report on my other symptoms:

      Fatigue: pretty intense, in part because my sleep quality and patterns have been disturbed.

      Nausea: omnipresent but held largely in check by meds.

      Appetite: surging—have to eat every three hours, particularly bad-carb “hangover food” like Chipotle, subs, pizza, Chinese takeout.

      Constipation: Taking Citrucel as needed, drinking over a gallon of water a day, and going for walks regularly.

      Hiccups (apparently it’s from the Cisplatin): sometimes for 8 hours straight. Annoying. Doctor prescribed Thorazine, which I neglected to take upon learning it’s typically prescribed as a powerful anti-psychotic.

      Tinnitus: 15-second bursts maybe 8 or 10 times a day

      Some dizziness, headaches and flu-like achiness.

      Honestly, it’s the mental symptoms that have been worse than expected: brain fog, irritability, extreme sensitivity to stimuli (particularly light and sound). Just a mental black hole. Grateful I took off work the long week.

      I will say at least I’m not noticing much neuropathy. Impossible to say if it’s from the cooling mittens and socks I’ve been wearing, but for $40 there’s no reason to not try them.

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      • #18
        Today is Day 14 of BEP and I was therefore supposed to get my second Bleo-only to complete the cycle, but my onc denied treatment on the basis of my blood work:

        White blood cell: 1.4, down from 6.2 one week ago (normal range: 4-10)
        Neutrophil: .1, down from 4.2 one week ago (normal range: 1.6 – 7)

        I hate the idea of delaying this Bleo shot by a week, but I’m also concerned by these numbers. Based on my research, my neutrophil count qualifies me for “severe neutropenia.”

        What to do? From what I’ve read, a one-week delay in treatment isn’t a big deal, but is it even necessary for what should only be 1 course? (CT scans this week will confirm whether or not I’m still Stage 1-B).

        How long until my WBC count rises?

        Is it worth emailing Dr. Einhorn again?

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