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Living with extreme neuropathy

24

Comments

  • gardengypsy
    gardengypsy Member Posts: 499
    edited August 2017

    Hi Jackie, Bosum et al,

    I posted about my neurology visit today over at the "Vent" thread. The neurologist didn't appear to recognize some of the symptoms we've been discussing here..



  • LauraSD
    LauraSD Member Posts: 3
    edited September 2017

    Hi Ladies:

    I developed a mild numbness in my feet about half way through my chemotherapy that progressed to foot pain and numbness after I finished my last round of chemo. I completed chemo in November, 2015 and I still have PN. It is not getting better. I have seen an integrative medicine specialist who tried L-glutamine, alpha lipoic acid, acetyl L carnitine, omega 3 fatty acids along with my normal multi-vitamins and Vitamin D. I did not see any improvement. I tried Lyrica with no success. Gabapentin seemed to help, but it caused severe headaches and brain fog. I saw a neurologist in Feb, 2017 who started me on amitriptyline at 25 mg per day. It worked. However, it caused severe sedation in me. I was instructed to take it at 7 pm so I would be able to get up for work the next day and I would basically fall asleep by 9 pm. It really decreased the quality time I was able to spend with my family in the evenings, so even though my pain was better, I decided to stop it. I weaned off it over several months and even the lower doses made me sedate. I have been completely off it for 2 weeks and the pain has definitely come back, but at least I can stay awake until later than 9.

    I just wanted to let you know about this drug because it is not a proven medication for neuropathy, but it may help you. And maybe you won't get the sedation that I got.

    Wishing you all more comfort in your daily lives!

    Laura

  • gardengypsy
    gardengypsy Member Posts: 499
    edited September 2017

    Thanks, Laura. Good luck. The sedation effect is welcome for those of us with insomnia! Gabapentin has that effect on me but I must keep taking it. I am 16 months out from the Taxol.

  • 2westies4me
    2westies4me Member Posts: 2
    edited October 2017

    I felt the same way. Thought I was pretty lucky until the neuropathy started getting worse....just don't understand. Am trying acupuncture, but no improvement yet.

    Have you received any tips on relieving the discomfort?

  • Jbakerwebb
    Jbakerwebb Member Posts: 12
    edited October 2017

    nothing other than gabapentin and custom orthotics. It's so odd because mine is bad some days and not so bad other day but always there. I'm one year out of chemo and it's about the same. I'm going to try the alpha lipoic (spelling?) again because I think it helped in the past. I just keep forgetting to get some.


    Tomorrow I go for my 3 month check up......it always brings a bit of stress.....and it takes all dayBUT I'm grateful to be here!!


    Blessings......jackie

  • gardengypsy
    gardengypsy Member Posts: 499
    edited October 2017

    Bosom and everyone:

    Three weeks ago we bought a house that had one floor living - including laundry - because stairs are dangerous and difficult for me.

    I am taking 2100 mg Gabapentin daily and it keeps the pain at bay unless I stay on my feet too long. It makes me totally loopy; I could never keep a job right now.

    I am having the muscle and nerve testing on Friday. I don't really know why I am putting myself through this.

    Very good recent article here on Neuropathy after Breast Cancer : http://www.medscape.com/viewarticle/885106

    Even though they focus on all types of neuropathy, I find the Foundation for Peripheral Neuropathy newsletter helpful and validating. You have to become a member.

    https://www.foundationforpn.org

    I am using arnica cream on my legs and feet at night. Hot baths feel good. I am trying to find someone to do foot reflexology/massage.

    Thinking of you, Bosum, and sending best wishes to everyone else who is suffering from this!

    This is not Pink.

    xoxoxo

  • lita19901
    lita19901 Member Posts: 176
    edited October 2017

    I have a question about neuropathy and aromatase inhibitors and/or tamoxifen. Did it exacerbate the neuropathy you experienced from chemo and/or cause neuropathy on its own?

  • gardengypsy
    gardengypsy Member Posts: 499
    edited October 2017

    jbakerwebb,


    What brand and dosage for the alpha lipoic?

  • Jbakerwebb
    Jbakerwebb Member Posts: 12
    edited October 2017

    I don’t recall the dosage but I do remember I got the info from the breastcancer.org site. Ive just neglected replacing mine.

  • Jbakerwebb
    Jbakerwebb Member Posts: 12
    edited October 2017

    found it! lopoic acid (1,000-1,200mg per day) along with B6, B12. B- complex and folic acid, as studies show they (especially the alpha lopoic acid) can help regenerate the nerve coverings destroyed by the chemo that protect the nerves.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited October 2017

    Thanks, Jackie.

    ---------

    Three days ago, I had a massage and acupuncture. I think it helped a lot. In my new city we have "Community Acupuncture" which lets you pay on a sliding scale.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited October 2017

    I think someone posted not long ago that folic acid is not good for BC? Will try the lipoid acid though.....My neuropathy just gets worse and worse. It is really starting to make me crazy! Enough to consider quitting my current tx.....

  • gardengypsy
    gardengypsy Member Posts: 499
    edited November 2017

    I just started taking a high quality Glutathione from naturopath.After just a few days, I am noticing a decrease in pain.

    I still need to run it by the pharmacist who specializes in oncology.


  • gardengypsy
    gardengypsy Member Posts: 499
    edited November 2017

    Lita~ I definitely think that the Tamoxifen has made my Neuropathy feel worse. I have joint pain in my ankles and that enhances the neuropathic pain in my legs.

    My PT is working on leg and foot balance and strengthening. Also cardio on the bike, since walking enhances the neuropathic pain in my legs..

    Here is an article on neuropathy and MMJ.

    https://www.marijuanaresources.com/marijuana-for-nerve-pain-offers-hope-neuropathy-sufferers/?utm_source=E-News+-+November+2017&utm_campaign=E-News+-+November+2017&utm_medium=email

    Hey Bosom...You hanging in there??

    MODS: Is there anyway to combine this thread with the “Vent" neuropathy thread?

    <3<3

  • dtad
    dtad Member Posts: 771
    edited November 2017

    gardengypsy...so sorry you are suffering with neuropathy. I have an autoimmune neuropathy that was present before my BC diagnosis. It is the main reason I refused anti hormone therapy from the start. My QOL was already impacted and I just wasn't willing to make it worse. Nobody can judge unless they know the pain of neuropathy. BTW I'm in the process of getting medical marijuana. Good luck and keep us posted.

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited November 2017

    For whatever reason I have seen significant improvement this month with my neuropathy. To briefly reiterate, I finished my chemo 4 years ago and there have been ups and downs, but mostly downs and progression. My lifestyle is the same, as are my supplements, so I am unsure why the recent improvement. If I had to gauge it I would say perhaps 25% better as a whole. The burning is greatly reduced by 50%, my hands are much better, the zaps and firing of the nerves remains constant but even the leg weakness is somewhat improved and in the comfort of my home I manage quite well and it is most evident when I venture out, though I no longer bring my cane for safety and stability. I wish I had some remedy to share but I have none except my stress level has been reduced. I had been dx'ed as having PTSD, not from the BC alone but from all the trauma of life prior to and thereafter. I am a fighter by nature with a strong belief system of right and wrong but I have walked away from most of my battles, at least for now, so that is the only thing in my life that has changed. I just hope I don't slide back again as emotionally that takes it toll and is a major mind f*ck.

    From all my research, doctoring and my personal experience along with others who contribute here, the window for nerve regeneration is roughly one to one and a half years after chemo. If improvement is not made during this time frame the prognosis is not good and course of treatment is pain management. This current reprieve is a welcomed change and it has given me hope that we may all still see improvement in the days to come.

    Loss of QOL is very difficult and my fear of loss of independent and being dependent on others frightens me a great deal especially as the aging process progresses, but neuropathy is especially cruel in that it serves as a constant reminder of BC and makes moving on and forgetting the past especially difficult. No one warned me as to the risks even when I asked several oncologists about potential SEs. These doctors had best get on board and acknowledge the potential adverse SEs of these drugs, especially when treating early stage cancers. At my next MO appointment I will be sure to mention how I suffer. I never mention it anymore feeling it falls on deaf ears but I will need be more vocal so they will be more forthcoming to the next potential victim.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited November 2017

    dtad~ Taking Glutathione, doing massage and acupuncture. I think it's helping

    Gotta get the mods to combine these two neuropathy threads. It's driving me nuts..

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited December 2017

    The neuropathy is back with a vengeance. I was so hopeful and so this decline is especially cruel.

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited December 2017

    I just realized that I had several drinks over the Thanksgiving holiday. I never made the association because the decline started a couple days after the alcohol intake. Perhaps it is random but that could well have done it. can't believe I didn't think of that.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited December 2017

    I can never tell what makes it worse. It so frustrating.

  • socallisa
    socallisa Member Posts: 10,184
    edited December 2017

    I have had painful neuropathy for 17 years now. Yes I had my BC back then. They tried all the meds on me but nothing worked like Lyrica. I started taking it when it first came out. I started with a small dose and worked up to 200mg twice a day . If I miss a dose I pay the price. My pain is in my feet and really pops up at night if I missed a dose.

    I tried acupuncture and it did help some. Our breast health center had an MD doctor who did it. She is a pathologist from Korea, but did her medical training in the USA. She moved unfortunately.

    I recently fell and broke both my ankles, had surgery and was in a wheelchair for 4 months. I couldn't put any weight on my feet and had casts. Now I am vertical and slowly getting better but hobble around. The pain in my ankles trumps my neuropathy.





  • socallisa
    socallisa Member Posts: 10,184
    edited December 2017

    I have had painful neuropathy for 17 years now. Yes I had my BC back then. They tried all the meds on me but nothing worked like Lyrica. I started taking it when it first came out. I started with a small dose and worked up to 200mg twice a day . If I miss a dose I pay the price. My pain is in my feet and really pops up at night if I missed a dose.

    I tried acupuncture and it did help some. Our breast health center had an MD doctor who did it. She is a pathologist from Korea, but did her medical training in the USA. She moved unfortunately.

    I recently fell and broke both my ankles, had surgery and was in a wheelchair for 4 months. I couldn't put any weight on my feet and had casts. Now I am vertical and slowly getting better but hobble around. The pain in my ankles trumps my neuropathy.





  • justamy
    justamy Member Posts: 296
    edited January 2018

    I have had neuropathy since I ended chemo 3 years ago. For some reason it has gotten 10 times worse in the last few months. My oncologist increased my gabepentin today. I just don't get why it would go from mild tingling and burning to flat out stabbing radiating pain with total numbness. Has anyone else had this happen? I am so angry that no one mentioned the risks of chemo before I had my treatments. I almost died during chemo from an allergic reaction to Taxol then they just replaced it with Taxotere. I had no idea it would cause permanent damage.

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited January 2018

    justamy, I hear you. :( I am pissed that two different oncologist practices mocked me when I mentioned icing my hands and feet and also when I wanted to use cold caps. I was told that my hair would grow back so get over it and they don't work anyway, and icing is a myth so stay off the internet and even if I did get neuropathy it would go away in a couple months. Well, my hair never regrew to what it was, a completely different color, texture and amount, and I have very little body hair since chemo. As to the neuropathy mine fluctuates hourly and daily which makes it hard to plan anything outside the home but has gotten progressively worse in the last 4 years. My glucose levels are in the prediabetes range so maybe that is a contributing factor and I should likely take the dang metformin to bring these levels down but I am not fond of all these meds.

  • socallisa
    socallisa Member Posts: 10,184
    edited January 2018

    did you get your nickname from pink's song.? I love it.

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited January 2018

    Ha! Yep, I am not much into pop music but I do like her song. It's kinda a catchy tune and "not broken just bent" describes how I feel even after 4 1/2 years. Initially I felt broken so there has been progress. ;)

  • socallisa
    socallisa Member Posts: 10,184
    edited January 2018

    I am not a Pink follower at 75, but I like that song and "Try". Try has been my theme recovering from both my broken ankles.

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited January 2018

    Not a Pink fan either but I know that song too. I worked with a bunch of young people and they would always turn the radio to all these pop stations. Yes SoCalLisa, Try is a good theme song too. ;)

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited February 2018

    I have a bit of good news to share. I ran into an old friend who is 9 years out from her BC dx. She suffered with terrible neuropathy issues but she shared that even this far out she continues to improve. The progress is slow but steady and better measured by years as opposed to weeks or months but she now is driving and able to do many things that 5 years ago she gave up hope of ever doing again. I was happy to hear this and it came at a good time because i have been very discouraged and depressed. FYI....she is still on Gab but other than that she only takes a vit B complex for the PN.

  • socallisa
    socallisa Member Posts: 10,184
    edited February 2018

    I could hardly walk. Then Lyrica was approved and it changed my life for the better.That was probably more than 10 years ago.

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