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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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    Aug 2012

    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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    Aug 2011
    Richland, Wa
    Im sure you know all this but I figured I would post it for you, if you know it you can just ignore it.


    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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    Aug 2012
    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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    Jul 2008
    bethel park pa
    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.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    mar-11 return to original site-oxyplatin,5fu
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  5. #5
    Newbie New User jennydanger's Avatar
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    Aug 2012
    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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    Jun 2008
    South Australia
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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 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

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  7. #7
    Newbie New User jennydanger's Avatar
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    Aug 2012
    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
    Newbie New User
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    Oct 2012
    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.

  9. #9
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    Oct 2012

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