Vent about Permanent Neuropathy
Comments
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Thanks for the stress comment Bosum.
I'm taking 100 mg B-6 and 1000 mcg B-12. I was taking double that amount of B-6 but my neurologist cut it down since she said it could cause more side effects than solutions. This is in addition to what's in the multivitimin - 3 mg B-6 and 25 mcg B-12. What quantities are you all taking?
Also still taking Biotin since my big toe nails haven't decided whether to get better or not. I was hoping to quit that since the hair on my legs is going crazy & and I can only use an electric razor due to numbness.
I have more feeling in some of my smaller toes, so now the biggest problem is the balls of my feet and 1/2 way up my calves.
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This thread is SO helpful! It helps to know I am not the only one... The neuropathy has been getting worse in my feet lately and I think it is because this summer I stopped going to my acupuncturist regularly. I am scheduling myself for once-a-week appointments asap!
Acupuncture kept me functioning during chemo (especially with the bowel issues) and it enabled me to regain the feeling in my fingers (so thankful!). I completed AC+T 12/30/11. My feet were the worst and, as I said, are getting bad again. I went to an appointment earlier this week and got relief almost instantly.
I am also going to try the Topricin as the pain is just too much. Thank you to those who recommended it!
<edit> My husband, a most amazing man, is popping over to Walgreen's to get it right now! It's 9:45pm... he is so good to me.
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Bosum - hooray for much improved!!! I need to find a yoga class.
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my gym has yoga, think I need to join the class, I know they have some beginner ones as it has ben way long since doing them
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I am sorry I am new here so I diddn't get time to read through all of the posts. I did post this in another thread in Stage iv
Has anyone been recommended L-Glutamine at 30 grams a day? This is tasteless and mixes in juice etc. I think the dose is taken 10 grams 3 times a day. I only know about this because I was on glutamine for wound healing during chemo and the dietitian had recommended "Juven" Later when I experienced Neuropathy she recomended I up my dose to 30 grams daily. She had a scientific paper I will try to track down but it helped immensely and is quite a bit cheaper than the juven.Very easy to take. My oncologist was very familiear with it so maybe worth asking L-Glutamine is just an amino acid but taken in higher doses than hormally seen in the diet.
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exercise_guru, I was aware of the 30gm of L-Glutamine and that protocol is for during active chemo. I did try it for a few weeks, but just could not sustain it over five months. I will be interested to hear if you can successfully take it throughout your chemo and whether you experience neuropathy afterward. Please post the results of your personal experiment here. Thanks!
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what I thought was neuropathy from the meds, now turns out to have been the early signs of spinal stenosis, pain in back and feet at just a part of it all
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BB, that stinks big time, hope you find some sort of relief, I am bonded to my lovelyheating pad but have been doing PT recently which seems to help all the junk
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BB--I found a good Physcial Therapy place that is helping me a lot, my balance was awful so we are working on that as well
amazing how many folks have back issues, just had an electrician in my house and he has back issues, if he were to take the heavy duty pain meds, he could loose his license if caught, and his wife is dealing with uterine cancer, guess that is why he came out to help me on this Sun morn!
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Hello Ladies
I have not been here in a very long time. As they say, life happens. I retired a few weeks ago and took my one and only grandchild to a college that is 2500 miles from home.
I am 2 years PFC and at its worst my feet would have the burning, tingling moving sensations that would keep me awake for hours when I am trying to go to sleep. I have been having other problems with my feet and ankles so the neuropathy was not at the top of my list of concerns. I mentioned this to my BS along with my complaint that most MOs seem to be so happy that they killed the disease or at least kept us alive that none of them appear to have any answers about the chemo side affects. My BS ( female who always listens) referred me to a rehabilitation specialist who has started working with chemo victims. He decided to try a two month trial on Cymbalta. I did not start noticing a difference until the second month but the neuropathy symptoms have improved.
My other foot problems have improved now that I no longer have to walk around 4 - 5 days a week on hard stone floors. Hmmm retirement does have some benefits.
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proud to spin, sorry to hear about the stenosis,
Bosum Blues, I think stress hurts coping abilities too. I don't know what the weather is doing where you are but cold damp weather really bothers me and I had quite a set back this spring when we had a spell of it. So much of the time it seems like we put things out there for each other to see if we can find things to help each other with it is so frustrating!
Gwenny, I absolutely think the ability to stop and get off your feet, get up again, stop, get up, stop, etc. is huge, Not many of us can do it but for those of us who are not on our feet working or who are retired it is a huge difference in how we manage
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sometimes my foot hardly hurts all day but then I'm tiring to go to sleep and I get these electric shock type sinners that take my breath away. Other yo ones a deep pain in the metatarsals. A massage therapist said its where there is a nerve that often gets a neuroma, but this is a different irritated pain in the middle of the foot behind the 3rd toe
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I just would like to say I understand all of you. I was diagnosed with an autoimmune polyneuropathy 15 years before my bc. I was 46 at the time. Neuropathy is really the worst pain one can have. It can give you all kinds of nasty sensations. From cold to hot, from burning to numbness, and just horrible pain. I do think that most docs are in the business of saving lives and not too sympathetic to the side effects of treatment. My advice is to get to a good neurologist while waiting for it to improve. Good luck.....
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I had a longer than normal course of chemo in 2012 - AC dd, Taxol dd, Carboplatin (6 months). Taxol caused my neuropathy - carboplatin exacerbated. I never had it as bad as most as I could hike on dirt trails and roads, though my feet burned and tingled toward the end of every 1-2 hour hike and I suffered the rest of the day with burning and I had constant numbness (initially I had some drop foot and weird stuff with my bladder and lower back, which I now think neuropathy)...walking on flat ground or down hill much harder than uphill (force). Walking thru the Costco parking lot, or standing on cement floors, the worst. I was told I would only see improvement for one year, maybe two years. That's about right until this last July, when I took 2 weeks off from walking and I experienced some miraculous improvement. I still have numb toes and the balls of my feet a bit numb, still burning and some tingling, but I would say I took a jump from 50% of the worst to about 20% in a rather sudden way after that break and this is year 3 after chemo! Other than the break, I can say since the first of the year I have been using B12 oral spray daily. Could that have made the difference? Yesterday I even walked 1.5 hours on paved FLAT streets with very little after affect. Yes, I still am aware I have neuropathy in my feet if I think about it, but my feet are not constantly reminding me of it, like they did, even earlier this year, so I think there is hope for improvement, even 3 years out.
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QuinnCat, Happy to read that you are continuing to improve. I have just passed two years also, but I never had a dramatic improvement. It has been barely perceptible most of the time, although I have arrived at the same place you have: Still numb in the toes and balls of feet but normal enough that I can sometimes go hours or a day without dwelling on it as I used to. Hope to hear more from you, especially if you have continued improvement. Good Luck!!!
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Elimar- the dramatic improvement surprised me! There were times, earlier in the year, when I thought of all the things I could no longer do because of neuropathy, and the realization I was over 2 years out and had read to expect no improvement after two years, I could get quite depressed about it all. I was only taking the B12 because I was trying a vegan diet (that didn't last
but I continued with the B12). I hope all can have surprises like this0 -
Hi. I'm new here and need some advice. I'm thinking of quitting chemo. I "only" am supposed to do 4 rounds of TC, but I'm 5 days after treatment #3 and the pins and needles are terrible. Maybe they will get better -I heard it does that between sessions sometimes- but I don't know if I could stand for it to get worse. I didn't get the oncotestDx, but it's estimated in the intermediate range. Did anyone stop chemo? Did anyone's neuropathy get better between treatments or stay bad after only 3 treatments? It's just so frustrating and scary.
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sloan15 ask MO about reducing dose or switching from taxotere to abraxane. Supposedly abraxane doesn't have a preservative in it that causes problems, but it is more expensive and insurance companies don't like to approve it. I believe it has the same chemo agent as taxotere. I had five treatments instead of 6 because I was stopped due to neuropathy (couldn't feel water temperature in hands, second toe next to pinkie toe was dropping and I had pins and needles and burning in lower legs, also gastrointestinal issues came up). For what it's worth, four months after chemo, all the issues have resolved. The MO also had me start alpha lipoic acid and something else for neuropathy.
But reducing dose or trying abraxane instead is a definite thing to consider.
The biggest thing to ask yourself is if you stop after round 3 and the cancer comes back, how much regret will you have?
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Polysorbate 80 is supposedly the taxotere preservative that causes problems.
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Italychick - as always, thank you for helping me. Your advice is gold. I'll talk to my MO next week. I also feel like crap which is making me want to quit, but yeah, I did this chemo to fight. I'm so glad to hear your neuropathy is better.
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Sloan15, any time. We are all here for each other! I hope you get your issues resolved.
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My MO prescribed L-Glutamine, medical grade powder, taken with liquid, 3X a day when I was on chemo.
He said it helped with a number of SEs, like mouth-sores, which I did not get.
I did get some chemo-induced neuropathy, but no pain, just weakness in the nerves of the legs. My nerve damage does seem to be improving since the end of chemo. I went to a neurologist to get tested during chemo and after chemo he said I basically was improving so much that I didn't need any followups unless something else developed.
The L-Glutamine was pretty horrible to take, though. Not bad tasting... no taste at all, really, but it was this super-gritty stuff! I'd rather have it in capsules! I actually didn't take it as much as I was supposed to... Maybe 2x a day, most of the time, and not while I was hospitalized for a week, etc. It was hard to tell if it was doing anything... but I really have a great MO who knows what he's doing, so I've got to think it had to be a good thing (even if I was bad at taking it).
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Sloan15 Hi there. IMO you could still get the oncotype done. With Stage 1 cancer no node involvement I'm not sure why doc would have you do chemo without the test being done. You have to outweigh the risks vs the benefits. Neuropathy is very serious and could affect your QOL for a very long time. I have the same stats as you with an intermediate oncotype and my MO said no chemo and I agreed. Can I ask where you are being treated? Good luck and ask a lot if questions!
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My one regret is having the 4th taxotere treatment. My neuropathy is life changing and the MO said that no tests were ever done to see if 3 treatments were enough or 4 were necessary. I was sick every day day during treatment (hospitalized twice) and thought the numbness was from the swelling. It wasn't. I got a much reduced dose but that was still too much. You will have to make your own decision and live with whichever choice you make.
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dtad - I'm still considering the oncotestdx. I thought my 1st MO did one, but it was another type of gene test for er/pr amounts. My ki67 was really high, so that put me into a luminal B like cancer, and with a strong family history (not Brca, but mutations), the MOs were split on chemo. The 3rd one asked if I'd regret not having chemo if the cancer came back. So, I had the chemo.
GraceB1 - What kind of test do they do to see if 3 is enough? How can they tell? That is where I am; I don't want to have regrets. Damn. I'm sorry for your pain. Does the radiation make it worse in fingers/toes, or just the part that gets radiated?
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Sloan15, I did cut my chemo short due to advancing neuropathy; however, when you read this please bear in mind that although my DX line is very similar to yours that my chemo was NOT for BC. I did not even have to do chemo for my BC. I am wondering why they felt you needed it...are you under age 50 or something? I do think Oncotype testing should have be included in the decision making process.
In my experience, the short term, acute neuropathy symptoms did change (decrease a bit) between rounds of chemo, but regardless all cancer chemo is cumulative, building over time. Many who post here did not get their long term, chronic neuropathy until after their last round of chemo. The saying is that if you stop chemo once you have the onset of neuropathy, it might already be too late to reverse it.
I agree with Italychick that you have to make a decision that you can be comfortable with, no regrets. It appears that your chemo is being given to you strictly as "insurance" and I am not even sure why because it looks like radiation and an anti-hormonals would be of greater benefit given your slow-growing ER+/PR+ BC.
It might help for you to think of it this way: The three rounds of chemo which you have already done would have done a great deal of damage---percentage-wise--to any rapidly growing cancer in your body. The final round will offer more benefit, but only to any remaining, growing cancer cells, those not already killed off in the first three rounds, so obviously a lesser percentage, if any. The thing is, most chemo presumes that within the window of when we do our chemo rounds that any circulating cells will find a cite in which to grow, thereby making them vulnerable to the chemo agents. Any cells that remain circulating, in other words, are not in a growth phase, may have the potential to become metastatic at a future point. This is why there is NO GUARANTEE that you will not have a recurrence, even with chemo, even doing the full course.
My own personal reasoning was this: Given that my neuropathy was advancing up my legs and affecting my field of vision, I felt that in doing 10 out of 12 rounds of chemo (all for the sake of "?question mark cancer?") that I probably reduced my chances for mets a great deal. I felt that IF I had (or will have) a recurrence, that the two rounds that I skipped would probably not have been the lynch pin and that it would have happened even if I did do all 12 rounds. I have lived comfortably with that decision ever since.
BTW, I talked it over with everyone while I was deciding what to do and the responses ranged from those who thought I was daft not to hang in there to chemo completion to those who thought I was daft to have done any chemo in the first place. Do your best at informing yourself, so that your decision will be right for you. Good Luck either way.
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elimar - you have given me a lot to think about. Like I said, I'm leaning toward no chemo#4. I thought about a reduced dose, but fortunately others chimed in on how that sometimes doesn't work. It helps to have stories to assist me with this decision.
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The problem is that there is no test to state when enough is enough. It's still just a guess, no testing has been done to find out if 5 treatments is better than 4 or 4 is really better than 3. Medicine is still a big guessing ground. It seems like every week something that medicine "knows" is true is found out to be false. First butter is bad for you but now they say the transfats are even worse so eat the butter. Eggs don't really raise cholesterol. Is coffee bad for you or not? This last week a meta study came out and said taking calcium and vitamin D doesn't help with fractures unless you also exercise. Hard to do when you're waiting two years for a hip replacement (finally scheduled for the end of the month
). If you're strongly er/pr+ hormone therapy will do as much to halt mets as chemo does according to my MO.0 -
Grace and BossumBlues --Thank you. I agree; I'm thinking the tamoxifen then AI's will protect me and not do the last chemo. (I'm 50, and I'm not sure if the chemo put me into permanent menopause, so tamoxifen for a few years). I still have to do radiation for 7 weeks. Will that make the neuropathy in my hands and feet worse, or does that just affect the breast tissue?
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You all have been really great, by the way. I really really appreciate your thoughts and advice.
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