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Thread: Hand and Foot Syndrome, still after all this time?

  1. #1
    Newbie New User jennydanger's Avatar
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    Hand and Foot Syndrome, still after all this time?

    I searched this forum before posting this question, but did not find an answer...

    I still suffer flare ups of Hand and Foot Syndrome, more than 5 years after finishing chemo. This last experience was pretty bad, i could not walk for 2 days.

    Initially, the oncologist simply lowered the dose of the chemo way back then, and did nothing more. I wasnt told how to care for the damaged tissue in my feet, I wasnt given any information about it. I was just told what it was and they would lower the dose.

    I spent the 2 following years in dress shoes, standing for 8 hrs a day at work. I endured the most horrendous pain, blisters, swelling, peeling. I was 'written up' at work for sometimes wearing Crocs or slippers (dress shoes were mandatory) as a way to get through the day.

    I dont know why my dr did nothing. I dont know why he didnt have me return for any follow up visits after finishing treatment. And I dont know why when I called to get an appt 2 weeks ago, it took over a week for them to call me back.


    Has anyone experienced H&FS so long after finishing treatment? Can anyone shed light on this problem or know anyone who went through this? I still have neuropathy in my feet, quite badly. I think that will always be the case.

    (I had to cancel my dr appt for a few reasons and wont be able to reschedule for about a month.)

  2. #2
    Moderator Top User jpearson's Avatar
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    Im sure you know all this but I figured I would post it for you, if you know it you can just ignore it.

    josh

    As the amount of oxaliplatin you take accumulates over several treatments, the risk of a longer-lasting sensory neuropathy in your hands and feet goes up. Initially this may be tingling or a feeling of pins and needles. Some patients may go on to have numbness and find it difficult to do small tasks with their hands like buttoning a shirt. In some cases, neuropathy can cause pain and difficulty with daily life, including walking or balancing.

    Oxaliplatin-induced neuropathy usually gets better once the drug is stopped, although some patients will experience an increase in symptoms after treatment ends that then fades. A small percentage of patients will continue to have some neuropathy for one to two years, and for a very small percentage neuropathy will be permanent

  3. #3
    Newbie New User jennydanger's Avatar
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    Thanks for that info. Ive learned to deal with the neuropathy, for the most part. Its the question of Hand and Foot Syndrome -still- being a problem after this amount of time, that I wondered about. I couldnt find info online about anyone having issues with it after such a time.

    Ive found that H&FS can be triggered by pressure, heat, impact, other trauma. The blisters, swelling, and pain are debilitating. I was hoping for someone to share their experience, but it seems like I might not find that here.

  4. #4
    Super Moderator Top User sheila's Avatar
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    Jenny- moms doctor told her the symptoms basically can last up to 5 years after treatment is stopped-some people it will go away some subsides to minimal and some unfortunately it doesn't go away and becomes a permanent issue I suppose depends on how much chemo was given to you and for how long you were on it plus the way your body eliminates it .
    all the things that will flare it up are things you mentioned plus over exertion can cause flareups such and manual labor jobs gardening etc and excercise .
    If you have a flare up make sure you dont develop a temp rise with it if you do call your doctor. staying hydrated minimizes the symptoms and avoiding those things. cool packs help when too bothersome. not cold -cool never heat.
    mom has the neuropathy which we believe will be permanant in her feel and a bit in her hands but she has not had much of a treatment of one kind or another in 6 years maybe one or two 6mo break and its not enough to figure out if it will go away.(were not counting on it) hope your doctor comes up with something that can subside your symptoms- should you discover something please share it hang in there.
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  5. #5
    Newbie New User jennydanger's Avatar
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    Thanks for sharing about your mom. Based on what you have told me, I am wondering if I will always have issues with this

  6. #6
    Administrator Top User ChemoMan's Avatar
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    Hi JD

    I don't think that wearing dress shoes and standing for so long is going to help. Could you try and get a letter from the doctor to at least be able to wear some sensible shoes without being written up and be able to spend sometime off your feet.

    Everything I have read about palmar-plantar erythrodysesthesia says that this should have resolved by now. Once again I would suggest you see a doctor about this as there maybe something that can be prescribed that may help and it could even be something else than PPE

    Good luck
    Age 58
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  7. #7
    Newbie New User jennydanger's Avatar
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    I should have clarified about not being in that work situation at this point. Ive been a stay-at-home-mom for the last 3 years. This last flare up was triggered when I was walking around for a about an hour and my feet began to sweat. I had on satin shoes which I expected to be non threatening.

    Thanks for responding. I plan to reschedule the appt I had to cancel, soon.

  8. #8
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    Jenny, your experience sounds familiar to me. I first developed hand and foot syndrome/peripheral neuropathy after starting chemo for advance breast cancer nearly 4 years ago. Although it improved once chemo stopped it has never gone away and at times can be quite bothersome - as it is at the moment....numb yet painful feet and lower legs, numb fingertips, burning sensation in hands, skin peeling. Early on, my oncologist gave me Lyrica to try but it didn't seem to help much then. After a recent bad flare up, she prescribed Gabapentin and that has helped. I try and take the capsules only at night because they make me a bit drowsy and generally I can take my mind of things during the day. I take 2-3 capsules at night. I have been on a clinical trial for the past two years (Bolero 2....Everolimus + Exemestane) and that hasn't helped the H&F syndrome though it has done wonders for holding things at bay...I have had virtually no disease progression.
    One of my main quests in life these days is to find the right shoes. I need plenty of room around the toes and soft inner soles. Around the house, thongs suit me best or lambs wool slippers in winter...but even they can get a bit hot. I do hope my rambling contains something that might help you. Take care.

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