Vent about Permanent Neuropathy
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my feet just ache sometimes more than others. Today is a bad day...
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SoCalLisa, so sorry you are having a bad day, hope it will pass soon.
I, too have seen very small and slow incremental improvement over 4 years. I also have good and bad days. I find that fatigue will set things off, so trying to get the amount of rest I really need is critical. I also have quit doing many things that stress my fingers (my feet & toes are fine, just my hands). When I do lots of typing and email and posting, my left hand, which has always been worse than the right, starts having tingling pain in the fingers, but if I quit, it resolves over a few hours. I can now touch my cat and even my own skin and DH skin without the "creepy" feeling that I had for a few years. I just recently noticed that. Elima, I think you really hit the nail on the head about the SLOW incremental progress that we cannot see day-to-day, but all of a sudden, one day, we sort of wake up and say, gee, I don't remember when but this is better than it was 3 years ago! And then I am very grateful! And realize I also don't really have the patience for this, but it is what it is, and I am learning to deal with it.
When I find myself being pulled back into the vortex of anger and self-pity, the thoughts that I don't WANT TO DEAL WITH THIS - well, I take a few deep breaths and remind myself that it does not make me happy to let my thoughts wander off into THOSE dark alleys, so I try to bring them back to something more productive. That is the only way I am getting through this. And then when I read posts like Elamir's, and realize I AM making very small progress, it is a little easier. I still feel badly for SoCalLisa and others who are NOT making as much progress and who have been dealing with this for so long. Sending special hugs to those who need them for this miserable condition.
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After one week of my 12 weekly taxol treatments I began to feel some numbness and tingling in my feet. My last taxol infusion was 3 weeks ago. I´m still have two FEC infusions, similar to AC.
I think my symptoms it is not very serious until now , but I am worried. I feel some pain,burning sensation and tingling in my feet if I walk for few minutes, sit or stay up for some time. I feel almost nothing if I lay in my bed. The pain is tolerable until now.
Do your MO recommend anything to try reverse neuropathy right after the first symptoms or just wait ?
Should I try to walk more or stay more time in bed ?
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Linda-n3, Yes, I agree with getting enough sleep. I had to go back to my earlier post and added that to the list of what seems to help me. My "bad days" almost always follow after I did not get enough restorative sleep the night before. Your story is encouraging in that improvement can still happen even after the 2-year time period quoted by most doctors. (Hmmmm....Maybe 2 years is the time patients quit mentioning it to the doctors, since they really can't do anything about it.)
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the problem is the pain prevents you from getting a good nights sleep.a vicious cycle
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Have to add that, today, I felt a single grain of rice that stuck to the ball of my foot when I was in the kitchen. Woo-hoo, good times!
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Elamir, you are cracking me up!
SoCalLisa, you make a very good point - something the docs frequently ignore because they just don't know the answers and it is so hard for them to admit they don't know something! And you have been dealing with this much longer than most of us - I truly don't know how you do as well as you do!
robsp, talk to your doc!!!! There are some medications that might be able to relieve the symptoms. You may also experience worsening of symptoms over the next few months, called "coasting". The damage has been done to the nerves, but the symptoms don't occur immediately, but rather over time. Again, talk to your doc! Get answers from him/her.
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Hello ladies.....I don't write here a lot but wanted to share I finally got a pedicure...I went to a fancier place than I normally do with my Mom. It hurt a bit but I am glad to get it over with and my feet look beautiful. I then bought 3 new pair of Clark shoes that were on sale for more than half off. All the same style but in different colors. They come up much higher on my foot than what I was wearing and I think the support is doing me good. My last chemo treatment was in December and I would agree that my neuropathy is a little better. the bottoms of my feet and toes are still pretty bad, but I have hope they will improve.
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Love - did you take your own nail 'tools'? Everything I've read has me scared to go. Besides I'm still in the process of losing my two big toenails. It seems never-ending. I almost wish they would just lift off like Lago described in another thread.
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Minus 2....I talked with my MO nurse a great deal and she just advised me to go someplace higher end...I watched them sanitize the tools and I soaked my feet in some sort of bath for quite some time before they did it. My Mom called and made the appointment because I felt funny telling them my BC story so it made me feel for comfortable that they knew before hand. I thought my middle toes might fall off because they were white half way down the nail bed, she clipped them off and painted them. She said she thought maybe a nail was growing underneath but wasn't sure. The massage felt really good but the scrub hurt. My pain is mostly at night. I am very glad I got it done but I can understand you feeling frustrated about it...it was driving me nuts not to have them done for Spring. Maybe talk with your MO nurse and see what she says. Wishing you the best.
PS Also this place opened new bottle of polish and let you keep it. I thought that was a nice sanitary touch.
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Linda-n3 - My doctor recommend to wait or can give me anti depressive like Cymbalta to relive the symptoms, but he says this drug do not treat nerve damage. I noted that some pain that I have is decreasing. The doctor says that most cases with taxol the symptoms go way, but I am not sure.
My MO says that I can walk, but I tried to walk 20 minutes in the morning and at afternoon the symptoms became worse.
ASCO updated a guideline about neuropathy this month and only thing they recommend is Cymbalta.Visit the link below.
http://www.asco.org/prevention-and-management-chem...
I decided to just wait. I hope that the symptoms go way.
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Just be aware that Cymbalta has a moderate drug interaction with Tamoxifen, possibly lessening effectiveness.
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Thought people may find this interesting
http://jco.ascopubs.org/content/early/2014/04/09/JCO.2013.54.0914.abstract
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Pfffft! So, the most conclusive finding was for Cymbalta which, as I posted above, really should not be taken with Tamoxifen; which a lot of us (possibly a majority) are on. Nothing to prevent CIPN, Cymbalta (has it's own nasty side effects) for pain, and nothing for numbness.
I'm not scoffing at you for posting, kmmd, just scoffing that CIPN has been reported for years, not even mentioned to many patients beforehand, symptoms not taken seriously by docs ("it will go away in time,") and even after all this time the pickin's are pretty slim as far as offering us relief. Terrible!
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Elimar, I hear you. It's very frustrating to deal with this life-changing side effect and get what amounts to a blank look from oncology and primary care doctors. I think their lack of responsiveness is due to the fact that there just isn't anything out there to treat CIPN once it takes hold. And, as you point out, nothing to prevent it, either.
I'm seeing a physiatrist (my second) who at least acknowledges the difficulties this causes. I have a complicating condition with arthritic knees. I'm seeing a physical therapist, giving gabapentin another try (better managed dosage this time), and joining a post-cancer exercise program. I'll try the compounding cream once my insurance company and the compounding pharmacy figure out how to talk to each other. So at least I feel I'm giving it a full-court press. This condition can be very depressing, just about the last thing you need once you've finished with treatment for breast cancer.
Onward and upward. Sending healthy thoughts.
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People who are weighing the pros and cons of chemo should really have a better idea of how limiting the long term side effects can be.
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If not Prevention, then Cure.
If not Cure, then chemo for only those who need it.
If not chemo for only those who need it, then chemo without deadly and permanently disabling SEs.
I am so fed up with news article that come out touting a new cancer drug, with the usual bad SEs and marginal breakthroughs (like extending life another 1.7 months in 51% of the hapless human guinea pigs that put it all on the line for the clinical trials.) I'm so unhappy that this is all the research billions can come up with.
I'm in a
mood!0 -
Hello, I am new to posting here, but have been looking for this title. I have had only the first two of 12 weekly Taxol. I already lost one big toe nail (with the second one improving from an anti-fungal cream I got from my dermatologist) from just the A/C, which isn't known for losing nails as Taxol is. Of course I'm also terribly concerned about preventing neuropathy in my toes and fingers. I am very physically active and exercise daily. My onc recommends ElastoGel gloves and booties - cyrotherapy - you bring them in frozen in a cooler, put them in the freezer there, and wear them just prior to getting the Taxol infusion. They are supposed to help prevent neuropathy and nail loss. Doc also recommends using tea tree oil, which I put on nails several times a day. Did any of you now suffering from these issues get any preventative info from your oncs prior to treatment?
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No, nothing from my doctor. It is like the dirty secret behind the everlasting gift of chemo.
But I would still do it again.
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I had my last DD taxol 1/30/14. I had started to develop some neuropathy in my feet after the 2nd treatment. It's still here and I don't think it has gotten better. I was hoping it would be gone by now. Doesn't neuropathy eventually resolve in most cases? I have a mild case but it my feet are partially numb and while I can walk okay, it still would be nice not to have any at all.
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Hi MomMom,
I think you're lucky to have gotten information about preventative action before chemo. I didn't, and I think most other women don't either. My dr. pretty much dismissed my complaints. I started to feel numbness in my feet after my second Taxol treatment. My neuropathy didn't resolve, and it's a disabling SE six years later.
2timer, yes, from what I've heard most cases of Taxol-related neuropathy resolve. Good luck. I hope yours simply goes away.
pip57, I'm with you. I'd do it again too, with a her2+ tumor. But I'd make much more noise about numbness in my feet when I first noticed it!
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I have heard oncologists say that they don't quite to do with those of us who have outlived our prognosis and have these long term side effects.
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Ladies just now posting, if you have not read the short abstract in the LINK posted by kmmd ABOVE on this page, please go back to read it.
There is NO PREVENTION and NO KNOWN CURE for CIPN. Period.
Some people's nerves do heal and regenerate over time. Do they come back 100%? Not always.
There are a few meds that help if you have PAIN. There is nothing for numbness.
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Here is what is upsetting me: New people come to this thread and they don't know this. NO ONE IS TELLING THEM THIS BEFORE CHEMO.
Yes, I know most of us would still take the risk of CIPN and do the chemo, by why are so many still blind-sided by CIPN. That is wrong!
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im with you, elimar. plus all the other crap they dont tell you before hand. they tell me, well, you are getting older. well, yeah, cause im not dead! but, i was getting older pre-dx, too, but now i feel i am on the accelerated aging plan. i was fine, balance was perfect, and xtremely strong fit and able at 52 when i was dxed. year and a half later, ifeel 60...crap. and i am just so angry this week.
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Elimar, While the link is depressing and certainly sounds final, I'm willing to give the cyrotherapy a try because at my onc practice, it's helping at least anecdotally. They've had fewer complaints with the women who have used it. I have heard from many women that losing toe nails in particular can occur months after chemo has ended. I don't know if this is correct, but someone told me you can lose them up to a year post chemo. In the greater scheme of things, it's not that a big a deal considering the rewards to be gained by the chemo, but it's painful and disfiguring and if there is anything I can do to avoid it, I'm gonna give it a try:-).
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MomMom - by all means do the icing. That is more to help w/the nails than the neuropathy but maybe you'll get an extra bonus. I iced with frozen peas and didn't do my toenails the first time. So I'm losing both big toenails. My Taxotere chemo was over in August 2013 & the toes still aren't finished. Derm doc said it could take more than a year.
As for the neuropathy "resolving": 70% get better over two years - some more than others - but my neurologist says you will NEVER get back to where you started. Better is a sliding scale. 30% never see any improvement. I'm in the watchful waiting stage with ice lumps for feet and fingers that will no longer do up my pants zipper or pick up coins or figure out if the plants need water.
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MomMom, Cryotherapy...why not? I do agree with what Minus Two said, tho', that it is more likely to have a nail sparing effect than CIPN prevention. All kind of anecdotes out there...all things possible (but for CIPN, just not too likely.) Let us know how you do after 12x of Taxol. Good Luck!
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I did not get told about anything to lessen the side effects from Taxol. I only had 3 treatments before it put me in the hospital and took it away. My CIPN got some better but feet and finger tips are still awful. I was one that started loosing toe nails 5 months after they stopped chemo. Lost all finger nails too but lost those right after stopping chemo.
Give it a try...anything is worth a try.
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Hi Ladies
Been mia for a few months. I finished taxotere on 8/15/13. Neuropathy started in sept. I now have tingling almost every night, especially when I am tired. I usually get the associated pain on the nights when I really want to get a good nights sleep. Fortunately, my hands are ok. I bought a topical cream from store. I only used it twice because it had a stinging sensation but did not seem to reduce the pain or tingling. Since some of you are seeing improvements after 2 years, I will try to be hopeful.
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GwennyMD, Even tho' I had different chemo agents, your story is so familiar. My last chemo was 8/19/13, and I had a few good weeks before CIPN began in Sept. I actually went ion a cross country road trip to move my son out to college at the end of Aug. and am sure I did not have any foot complaints at the time. My hands are not affected either.
In the early months of Sept./Oct./Nov. I had pain that felt like cold/crushing. I had PTx6 with Anodyne Therapy (it uses far infra red.) At the time, it did not seem to do much but, looking back, by end of Dec./Jan., the pain had given way mostly to just numbness.
My new theory is that the pain does not just come from damaged old nerves. I am wondering if the pain does not come from strange and irregular growth of new nerves because they don't get "wired" properly. This thinking is because a lot of us don't get pain until the chemo is over, when you would expect our cells to begin the repair process. But the nerves are repairing themselves in a crazy, jumbled way now. Oh well, just an idea, probably wrong since this does not seem too difficult for science and a good anatomist to check out. I'm always trying to understand why I am like this (and when you are numb every day, it's just a reminder to keep thinking about these things!)
A few posts back, I listed the degree of numbness in each foot. I think
I am about at 30% for lefty now, and 40% for righty. Left toe feeling
somewhat human, right toe still a foreign object. So, that is a tiny bit of improvement, I think.A good night's rest is KEY to having them feel a bit better.
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