Vent about Permanent Neuropathy
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Gwinny, mine is in my feet the hardest at night ..but since I have taken Lyrica, the pain has become alot less..
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Elimar & SoCallLisa
My post 781 above mentions the freezing therapy I'm using for my Taxol treatments in an attempt to prevent or lessen CIPN. Already had some nail loss from AC as well. Several women told me that acupuncture helped prevent neuropathy and nail loss. I just returned from my first acupuncture treatment ever. I was concerned that it might be uncomfortable, but I was actually able to relax through the treatment. Don't know if it will work, but worth the effort is how I'm looking at it. I will go approx. once a week for the rest of my weekly Taxol, and then maybe every other week post chemo for awhile.
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MomMom, Keep us posted, especially if you manage to get by unscathed by any CIPN, keeping in mind that some of us did not even have the onset of CIPN til chemo was months past. I say again, there is no scientifically known prevention. You can say there are anecdotes. I can say, yes, but even placebos work for some people. I do hope that you escape CIPN and I am rooting for you; however, if you do it will remain unknown whether it was any of the actions you did OR whether you might have been one of the lucky ones who did not get CIPN. Legend has it there are some of those people out there. You know, like Bigfoot.
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I had many acupuncture treatments for my feet. They helped some and got circulation higher. The acupuncturist was an MD.
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She included moxibustion and cupping.
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Maybe acupuncture may help. See a recent clinical trial study below.
http://clinicaltrials.gov/ct2/show/NCT02129686
A Pilot Study of Acupuncture for Chemotherapy-induced Peripheral Neuropathy in Breast Cancer Patients
First received: April 30, 2014
Sponsor:
Dana-Farber Cancer Institute
Collaborator:
The Comprehensive and Integrative Medicine Institute of South Korea
Detailed Description:
Chemotherapy
drugs used to treat cancer can cause temporary or permanent damage to
the nerves in the hands and feet, a condition called
"chemotherapy-induced peripheral neuropathy". The most common symptoms
of chemotherapy-induced peripheral neuropathy are pain, tingling,
burning or numbness sensation, which can lead to balance problems or
trouble using fingers or pick up/holding things. These symptoms often
last months to years after the completion of chemotherapy. Medications
and nutritional supplements can ease the symptoms of
chemotherapy-induced peripheral neuropathy, but many patients continue
to experience symptoms despite these treatments.Acupuncture is an
intervention in which hair-thin, stainless steel needles are shallowly
inserted into specific points on the skin, with the goal of influencing
the body's natural healing system. Acupuncture has been studied in
clinical trials in cancer patients and has been shown to be effective
for various conditions including chemotherapy-induced nausea and
vomiting. A few preliminary studies have suggested that acupuncture may
help to reduce symptoms of peripheral neuropathy, but more information
is needed about the benefits of acupuncture in breast cancer patients
This study is being done to evaluate the potential benefits of using
acupuncture to reduce symptoms of tingling, burning, numbness and pain
in the hands and feet of women with peripheral neuropathy after
completion of chemotherapy for breast cancer.This research study will
help to determine the benefits of acupuncture for the treatment of
chemotherapy-induced peripheral neuropathy. The study will also look at
two different acupuncture schedules to determine whether patients derive
benefits from lower and higher dose acupuncture treatments.0 -
MomMom and everyone,
Just to report my experience: I had 12 acupuncture treatments at Dana-Farber with a highly skilled, very well credentialed acupuncturist, trained both in China and at Harvard. He was wonderful, the treatments were wonderful and deeply calming, and they relieved the pains in my arthritic knees. They had no effect on the neuropathy in my feet.
If acupuncture helps you during treatment, by all means pursue it. Everyone's body and body chemistry is unique, and who can say if the treatments will help you? The main thing is to keep trying to achieve some kind of physical health and strength and mental tranquility. Good luck.
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Acupuncture didn't seem to help my neuropathy pain but it helped me seem a little less angry about it
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kmmd0 -
Has anyone had significant recovery from neuropathy, then had another chemo that has the potential to cause CIPN? My MO said there are several options for treating my cancer now, but all of them include chemo drugs that have the potential to cause CIPN. It took nearly 4 years for mine to settle down enough so that I can do some cooking, some gardening, and I don't have a creepy feeling when touching my DH or my cat, but I still get tingling and pain when on keyboard for prolonged time, like 30 minutes or so. I just cannot deal with the idea that I may get it again and my life my not be long enough to recover from it IF I get it to allow me the pleasure of petting my cat and DH. Is this an unreasonable fear? Am I being unreasonable for declining the chemo? There is just one more drug we are going to try next week that does not cause CIPN, but if it doesn't work, not much left. Looking for ideas, suggestions, support, "devil's advocate questions", etc. I am finding it difficult to see the "big picture" and not seeing a clear path. Thanks.
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Oh, Linda, that is such a hard position to be in. Most times when people ask "should I or shouldn't I?" about chemo or the hormonals, I usually say, "Well, give it a try and if it is too much for you, then stop." That is still good advice regarding many of the side effects but, with CIPN, by the time you feel the onset of the nerve damage, even if you quit right then and there, the damage still seems to progress past that point and with no guarantees whether it will reverse or not. I hear what you are saying about an acceptable QOL. You are not being unreasonable.
Good Luck with the one last chemo which does not cause CIPN. If I had your choice to make besides that one chemo, I would probably research the heck out of all the other chemo options. Of course, you have to weigh the other SEs as well, but maybe you can find out which has the least incidence of causing CIPN. Some must be worse than others, so unless there is a certain order the doctor feels you should do the chemos in, I would say try to begin with the one easiest on the nervous system. Hopefully you will tolerate it well and it will be effective at halting progression for a long time.
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Linda - what Eli said times two. I'm so sorry you have to make this choice. I'm really big on quality of life over just "more time", but I don't know what my choice would be - even though I have thought about it. When I complained about the neuropathy during my first batch of chemo, the MO gave me the choice at tx #5 and tx # 6 to cut back or skip. I went ahead w/the full doses since I'm not hormone positive and don't have lots of other options. I still don't know if the neuropathy was worth it. I agree about the research. Maybe some of the drugs are less damaging. I think age & family make a difference too so you'll be considering your circumstances. I'll be 70 this year, and am single, and don't have grandchildren, so some of my choices might be easier. I'll keep you in my thoughts as you wrestle with this difficult decision. Please keep in touch.
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Hello ladies...
Linda....when I went thru my treatment I didn't even think I had a choice in the matter, the bottoms of my feet and left hand have CIPN. I think my hand is improving and it was the last SE to show up. My feet are pretty annoying but I find good shoes help a lot. I can see where it is a hard choice to make, I always tell myself I wouldn't want to have treatment that would prevent me from being mobile. I pray you find the right answer for you.
I went to the express care on Thursday because I noticed I had an infection under the nail on my big toe. I had the same thing on my middle toe after chemo and it went away with Neosporin. Anyway since I have neuropathy and diabetes it really scared me and I guess I over reacted. I am terrified of getting toes or legs or feet cut off! (Who wouldn't be) Last night I soaked with Epson salt and put peroxide on it as the nurse suggested and it is gone. Also taking antibiotic.
Hope you all are having a nice Holiday.
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Linda, I had a friend who did. Had a recurrence and was scared to have to do a taxane again because of the neuropathy when she'd just started to see some improvement. But you know, it is so hard to go from individual stories, and it is such a personal decision. Hugs from afar I'm so sorry you're having to make that decision
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Thanks for the responses all. I have decided to NOT do more chemo right now, have opted for Faslodex only for now. It will take a while to see if it works, and it might be too late to change if the cancer decides to grow quickly, but I am at peace with this decision. I need my hands and fingers, and if that means dying a little sooner, so be it, at least I will be able to caress my DH and cat and do those things which bring me most pleasure. Here's hoping for good results overall, and sending hugs back to all of you.
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Dear Linda-n3,
What a difficult decision, and how well you've expressed what's at stake here. Happy for you that you've made your choice and wishing you good health and many long and happy days with your dear husband and kitty. When all is said and done, these are the things that matter most. Sending love and good wishes.
Ann
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I PM'd Linda last night. If anyone understands how devastating neuropathy is and how much it sucks out of your life it is the group here, we totally support you Linda
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Linda .... A tough decision. I woke up this morning with my left leg feeling like it was on fire. Now it's good. Don't know what I would do in your position. Hoping the tx you choose is kind to you.
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Thanks again for all your support and understanding! So far the Faslodex caused a lot more sore muscle than I had anticipated, but it is resolving, and I know other SEs won't be apparent for a while as this one takes a while to really kick in, but I am at peace with the plan. Kmmd is truly correct - this is the group that truly understands what neuropathy REALLY means to quality of life. MO says she understands, but acknowledges she really cannot understand at the level of lived experience, so she is also being supportive, even though she would rather I be more "aggressive" with chemo. Now off to walk to work out the soreness in my muscles from the injections - at least it's not burning up more veins. I am grateful that the neuropathy did not affect my feet as well because walking is the other great activity that I love, and am hoping to hike in VT in a few weeks, hopefully doing the same hike that my avatar came from. I keep that because it reminds me that I have been able to hike, and have hope that I will continue to be able to do that.
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For any who might not have seen it, here is the BCO recap of the JCO article listing ASCO guidelines about CIPN:
(I think that is my personal best of getting 4 acronyms into one sentence. Heehee!)
http://www.breastcancer.org/research-news/guidelines-address-cancer-survivor-issues
You will notice that using B-12, B-6, L-Glutamine; or the use of acupuncture or anodyne therapy is not mentioned, so feel free to read more on those possibilities in the chance you might like to "guinea pig" yourself on one or more of those. Above all, don't "settle" with having this SE. Do keep reporting it to your docs, keep reading and keep trying to find relief. In other words, try not to give up.
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I'm finding that walking barefoot on grass and pavement feel weird on my feet.
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Thanks elimar....I can hardly bear to walk on towels....0 -
Early on I went to an OT who tried to use some "desensitization" techniques, like touching all kinds of textures, including towels, immersing hands in rice, etc. Nothing really worked, but I do recall the towels were not real fun.
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Yet, somehow, even in the beginning when I had the least feeling in my feet, I found it comforting to kind of wedge my feet between the microfiber cushions on my sofa. (Try to sense the conspiratorial way I am sharing that weirdness with you. Wink!)
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I like to put my feet on cool surface like the metal on chair legs!
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I love the cold tile in our bathroom for my feet. My neuropathy my feet like to be cold. If they get too hot they feel like they are literally on fire and a heavy weight. My hands are similar but they just turn really red. I don't have the on fire feeling like the feet.
Do any of you notice your symptoms are much worse when you run a temp. I never put it together until two weeks ago.
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Bad burning pain today so I invited " Mary Jane " over.
Feeling much better. 
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good for you pip, we should all have such a good friend
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pip - right on. My best friend who died a number of years ago from pancreatic cancer was lucky to have such a good friend. Hope I do too.
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just joining this thread & reading over the posts...have nueropathy in both feet - toes mostly & the balls sometimes - gets worse when i'm on my feet a lot - affects my walking - which affects my bad knees - which affects my lower back/hips...no bueno
no i was not even aware of this SE with chemo - yes it didn't get bad til after I was done - yes my Onc just tells me it will hopefully go away with absolutely no advice on how to make this happen
no i do not want to take anymore drugs aka Lyrica, Cymbalta etc. - yes i have tried acupuncture with no success - vibration (tho admittedly not consistently) i wiggle my toes - rotate my feet - take all the supplements that supposedly help - lotions ( i like Aspercreme & Blue Aloe w/lidocane which is actually for sunburn)
tonight i tried a hot/cold shocker treatment
they say doing that in your shower gets the circulation going, so why not? alternated between a tub of a little ice water & my microwaveable heat pad - except for the initial shock of the water - my feet feel pretty damn good - so i will try it again tomorrow.have to ask pip57: is "Mary jane" an actually friend? or a little somethin somethin to ease the pain?
totally agree that they should have come up with a better "cure" by now with little or no SE's - somebody's making money somewhere...now they are done with us & back into the world they throw us - trying to go back to our old lives with all theses complications & no guarantees for the future
breast cancer survivor? breast cancer cure survivor - keep your pink ribbons
sorry, ladies, reading these posts got me going!
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MaryJane is a good friend to many
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