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.)
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
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.
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.
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
surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
port-port rejection-port removed 1week.
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-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!
starting a regimine of celebrex
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)
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.
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
Diffuse Large B cell Lymphoma
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 on the 2/01/2013
No more scheduled visits to the Prof http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules
Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.
I may not have gone where I intended to go, but I think I have ended up where I needed to be.
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.
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.
Women may be the preferred traditional crochet UGG Basic Tall boots
The traits of the natural leather are better than other materials. The reason lies throughout its flexibility, venting, durability, folding endurance and elegance. So it is the essential heel material for your abercrombie pas cher high-quality leather shoes. There is a great difference among the parts of the whole little bit of the natural leather. Because of the different functions with the fur of the animals' bodies, the fiber construction in addition to dense of different parts are different after making into your leather, especially the appearance, touching feeling and toughness.
When the UGG brand of shoes began in Australia from the canada goose jassen 70s, nobody knew how large and popular it could eventually become. There are now stores in numerous different countries, and UGG products are acquireable online.