Neuropathy

ShadyGuy
ShadyGuy Member Posts: 922 Member
edited August 2023 in Lymphoma (Hodgkin and Non-Hodgkin) #1

My last chemo was in July 2018 but after 5 years I still experience neuropathy. It is mostly at night and interferes with my ability to sleep. It always starts in my toes and front part of both feet. It is a weird tingling/numb feeling. Occasionally it goes all the way to my knees. Hot baths help but the gabapentin my doc prescribes seems to have little benefit. Just wondering if others have this and how do you deal with it? Thanks in advance for any suggestions.

Comments

  • Evarista
    Evarista Member Posts: 336 Member
    edited August 2023 #2

    Hi Shady. Nice to e-see you!

    I still struggle with this same problem intermittently. I have dealt with it by making a "tent" that lifts the bed covers off of my feet. This helps a bunch, especially in winter when the covers are heavier. I use a folding/loosening method, but there are devices that are made specifically for this issue. On Amazon, search "blanket lifters for feet".

    Stay well

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited August 2023 #3
    https://csn.cancer.org/discussion/326955/neuropathy

    Shadester,

    Good to be speaking with you again. A benefit of asking questions here is that you get a random but broad assortment of replies, whether they constitute what you were hoping to hear, or not. I looked up Gabapentin, being unfamiliar. Hum..... Quite an 'interesting' legal and prescribing history with that drug.

    I was part of a chemotherapy-induced neuropathy study in 2012, and learned a few things worth sharing. For one thing, chemotherapy-induced neuropathy is very different from diabetic neuropathy, and in general the former does NOT respond to treatments developed for the latter. Also, most or all neuropathy drugs seemed to be derived from psychotropic elements, especially anti-depressants. The cream used in my clinical study was derived from SSRI chemicals, for instance. The study showed that drug (whatever it was) to be a failure, based on the statistical requirements set by the FDA; it certainly never did me any good.

    I find chemo neuropathy to present much like RLS, which I also have, and have had since childhood. You might want to ask your doctor if prescribing you an RLS med is sound and worthwhile. I still have significant neuropathy in both hands and feet, 14 years after ending ABVD..... [ Note to the ever-vigilant Eds: I am not 'recommending' anything here, just sharing something Shady might want to ASK his DOCTOR about, since that is what he asked for in his initial post. ]

    Occasionally I read that there are drugs now approved for chemo neuropathy, but the ones I have read the data sheets on have all been approved for 'off-label' conditions, of which chemo neuropathy is an example. This observation might not be true any longer, but I suspect it is, and that matches what your doctor did with the gab....

    Max

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    edited August 2023 #4

    Thank you Max and Evarista for your replies. Yes mine is intermittent in severity too. Sometimes it is mild and sometimes it is unnerving. My doc at Duke thinks it is most likely a result of chemo.

    I have always admired Max for his thoroughness and Evarista for her very articulate and precise replies. I had back surgery at Vanderbilt in 2019 and sometimes wonder if that could be the cause of some of this. The Vanderbilt surgeon was fantastic and the outpatient surgery provided great relief for my chronic back pain. I was reluctant but think my decision to have that surgery was among the smartest things I ever did for my health. I think for now I will just have to live with this. The gabapentin and other drugs prescribed (mostly antidepressants in off label use) have been no help at all.

    Summer is almost over. The leaves on my sugar maples are turning. I will be leaving the cabin next week after 3 months here. I hate going back to the city. The highest temp I saw here all summer was 84. Most days were in the 70s. We had guests for dinner a couple of days ago. They left at 1030 PM and saw 3 adult black bears on our drive.i love nature and wild things. That makes my health situation bearable.

    My best to both of you and also to Rocquie!

  • po18guy
    po18guy Member Posts: 1,505 Member
    #5

    I have ended up with both chemo-induced plus diabetic neuopathy, so I just live life as best I can. Clinical trials are always worth looking into and asking doctor about.

    https://www.clinicaltrials.gov/search?cond=chemotherapy%20neuropathy&checkSpell=false

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    edited August 2023 #6

    Evarista, Max and Po

    Thanks for your helpful comments. I am trying to avoid doctors to the extent possible so unless it worsens I am just living with it for now. The more I see doctors the less I want to see more of them.

    I am very reluctant to take the types of drugs being prescribed for this. Oxy they gave me helps a bit but keeps me awake. I have taken only 5 of the months prescription I got in May. Hot baths before bed seem to be beneficial. No magic bullets for this!

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