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Late side effect to epx4?

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  • Late side effect to epx4?

    Hi everyone,

    I am almost 3 months removed from EPx4 and about 5 weeks removed from RPLND. All clear in terms of scans and markers!

    However, lately (since I left hospital from RPLND) but intensified lately is neuropathy in my toes, feet, and hands. Nothing major just some tingling. I know this is a side effect but would it really have started like 2 months after the end of treatment? Just concerned and wasn’t sure if I should call my Onc or if there is really nothing we can do to alieviate the symptoms.

    Let me know if you guys have experienced this or not!

    Hope everyone is doing well! Keep fighting the fight

  • #2
    yes, my neuropathy got worse post chemo until about 6 months out, then gradually got better.
    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!
    4/15/19: all clears up to this date!


    • #3
      Yes, if you get Neuropathy it's typically delayed onset by ~ 90 days.

      I never had neuropathy during treatments. I completed my treatments in July and in October I started to experience it.

      To this day, almost 5 years now, I've had it. However it comes and goes. Seems to be worse when it's warmer/hotter outside and when I use my hands/feet more. It's just an annoying tingling sensation now as I type this.

      For some people it goes away. I talked to one guy who said it went away after 8 years. I am still hoping mine might, but if not I can easily live with it.

      - 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 !


      • #4
        Mine started during treatment & is still with me, just fingertips though. Makes it difricult at times to handle small parts (and to find the tab on my fly)
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP