Vent about Permanent Neuropathy
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Ativan is known to screw with your sleep wake cycles and it did it to me big time. Add that into the other meds and chemo and I didn't really sleep for months after chemo. Lack of sleep makes everything worse, I totally agree.0 -
Angela, if you are doing radiation, are you also on a steroid? Another helpful med that messes with everything and you have to wean off carefully. I haven't managed to get completely off it yet.
So sorry to hear you are struggling. Hang in there.0 -
Just a reminder to some of you who are thinking of "taking myself off" medications like gabapentin (Neurontin) - PLEASE discuss with your doctor first as some of these very powerful meds can lead to withdrawal symptoms if you quit suddenly, can make mood even worse, etc. PLEASE talk with your doc before starting or stopping ANY prescription medication! And at least talk with your pharmacist to make sure there are no potential drug-drug interactions when starting new meds.
Have been off the cream for a week, started having pins & needles in fingers again yesterday. I had forgotten to take Rx to pharmacy before the holiday, so got it in today, will get the cream tomorrow, and just have to wait a while to get things settled back down. Stupid me! I will pay better attention to expiration dates and running out of it!!!0 -
Hi All,I talked to my doctor today and I'm going to taper off,thanks for the advice. I'm off steroids since the end of october,thanks Chickadee for the caring words,Debdylan I'm hoping my hair will come back red again,and I do need to give myself time to adjust to being off all those chemo meds. The thing is the neurontin helped my neuropathy just not the rls and now I'm scared the neuropathy pains will come back. Is anyone on lyrica? Maybe that won't cause the depression/mood swings as much? My neurologist really didn't talk about options just put me on neurontin off the bat,I quess I need to do some research. Thanks for listening and all your input,nobody knows better than you all about this stuff.Angela0 -
Chemically, Lyrica and Neurontin are similar, except Lyrica has no inexpensive generic yet.0 -
Thanks Elimar,in that case Lyrica is out! Ang0 -
I have neuropathy as a permannet SE of chemo , mostly in my feet, some in my hands (ladies it is never temp SE, always permanent). I am on Lyrica now; Gabapentin (Neurontin) made me swell in my feet - no good. Lyrica works better for the nerve pains. Yes, Lyrica is expensive med with no generic available yet and you have to go through the loops with insurance to be approved for it first. I am still trying to adjust my dose, so I am not so loopy. I have bloory vision. Plus, ladies who take steroids - be aware that steroids cause diabetes type 2, because they alter islets cells in pancreas that produces insulin. I am now diabetic to everything else... because of use of steroids during chemo. And diabetes will cause neuropathy as well, and that whole thing is dangerous due to risk of amputations, etc.
For these who are still going through chemo: your hair will start growing salt-and pepper and curly (crazy curly) probbaly in 5-6 months, the hair folicles are affected by drugs and they literally collapsed, so that 's why hair comes out lacking pigment and curly. But now in almost a year post-treatments my hair started relaxing , and not so tight curly. I colored it, but you advised not to color unless the length is about 3" long, otherwise you still have too much drugs in your hair and color might turn weird color, just to warn you, you have to tell your hairdresser that you just finished chemo.Good luck ladies with everything!
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I haven't had chemo, but rads gave me permanent breast nerve pain. Is it ok if I join you all?
Been fighting dizzy and nausea for 3 months now and the pain doc decided to slowly get me off the Gralise (timed released gabapentin) - 3 days into the lowering dose and besides having some of the nerve pain back, I'm dizzy, very nauseous, creepy crawlies, twitchy and headache. Withdrawals???? you think???0 -
Welcome gmafoley. I don't have any experience but it sure sounds like you are sure suffering. I hope your doc has some better ideas.0 -
GmaF, yes, join us! Sounds like you are tapering too fast. I had a real problem getting off venlafxine, MAJOR withdrawal symptoms, had to decrease over 2 weeks and I was already on the lowest dose possible, so had to open the capsules and take half of the contents and then half again, etc.
Good luck, lots of hugs!0 -
Linda n-3, been there on the issues of meds renewal, just could have kicked myself if it wouldn't have hurt my feet so much!
I'll second the issue of weaning of gabapentin with a doctor's supervision. It was initially developed as an anti-seizure medication and they list seizures as one of the risks of too fast a wean from too high a dose. GmaFoley, I did fine with a slow wean until I was completely off, after that last 100 mg was done I had nausea, shaky feelings, at times felt like I was going to pass out and was sure the floor was rising up to hit me. Just a hard to describe horrible feeling. So, yes, I do think what you're describing could be what I thought was gabapentin withdrawal, sounds a lot the same.0 -
Can't taper off any slower - It is a 300mg pill that you can't split - and was on 900mg so lowest pill is 300.0 -
That is where I ended up too, down to as low as it can go and had to just go off completely. I felt better after a couple of weeks, I just had to be careful about what I was doing, not be the one to drain large pots of boiling water etc. , until I felt better again0 -
Gabapentin DOES come in a 100 mg. hard capsule. If you let your doc know you want to wean off, you could probably just get a Rx phoned in. It's not expensive but if you didn't want to buy a months worth, get a 10 or 14 day supply. You still may notice some withdrawl coming off that totally, but it won't be as bad as going cold turkey off the 300 mg. ones.0 -
I'm not doing this cold turkey - Let me clarify. He just told me to "Ride it Out" or take benydryl (to sleep it off) Kinda hard to do when you are working 46 hours a week.. I am on the timed released version and you can't mix the 2 types. I used to take 1800mg of gaba but only take 900mg of Gralise for the same effect.. It makes things even worse to change. It is one or the other and he thinks I will get through it without doing that. Really thinking of calling my primary but she always defers pain issues to pain doc.0 -
Hope you feel better soon GmaFoley.0 -
I hear you DebDylan, the meds for the chemo, then the meds for the side effects of the meds, then the meds for the side effects from the meds you took for the side effects of the meds0 -
kmmd - thanks for the laugh. Sure is true.0 -
Hoping everyone is surviving the storms. We are still Iced-in. The snow starts melting and freezes overnight. Can't get down our mountain unless you want to snow shoe or bobsled out. Problem is too many turns and too steep to bobsled . We are staying bundled inside. Fortunately, we put a heater in the pump house but cistern is frozen, so we will run out of water soon until we thaw out. Wreaks havoc on the nerve pain but makes for pretty pictures.
The dizzy and nausea have lessened a bit since I dropped the gralise down to 600mg. Withdrawals were bad but did opt to use the Benadryl. Got me through the snowed/iced-in week. I get shakey and headache, off and on, but bearable. That is the good news. Bad news is the pain is back and I'm having trouble wearing bras again. Not sure what to do. I will get through this, as I get through everything.
When you are nice and cozy or when you are having the dreaded hot flashes here's a picture to cool you off.
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GmaF, thank you SOOOO much for the beautiful photo! We used to live in the snow belt, and now live in the south where winters are cold (OK, not really cold, but about 40F), gray, and rainy. Nothing you can go out and play in! We really miss the beauty of the snow, but I have to say I don't miss shoveling my car out every day on the parking lot at work!
Am so sorry about the returning pain. I say, just toss the bras!!!!! Seems to me t-shirts and flannel shirts would be your best friend, just my humble opinion.
Of course, I always hated wearing bras to begin with, never wore them at home. Same thing with panty hose, and now I am stuck with that torture device on my arm instead of my legs. BOOOOO-HISSSSS! 
P.S. If my DH ever sees one of your photos from your home, he will want to move in!!!! We used to have a house that had a great view of mountains, now we are in a more gentrified neighborhood, have 3 acres, but it is like a city park, flat, allowed to have a horse but no chickens. Way too civilized!!!
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Both times I missed getting chemo, with some reluctance with the last one (grade 3), but quality of life matters to me after dealing with post mastectomy pain syndrome and I hear you about nerve pain. It's a bitch. I have had unrelenting burning mouth/tingling/numbness likely due to TMJ for almost 8 years now. Somehow, you cope or adjust, whatever it's called. There is some good research going on about pain meds and treatments; hopefully we can all benefit from them soon!0 -
Beautiful picture. Cold wrecking havoc with me the last few weeks too. My feet get so cold and hurt, then when I get them warmed up the burning intensifies and I wonder why I didn't let them stay cold, till the next night and I remember how much that hurts again0 -
Question for everyone (I posted this on the Taxol site as well): My last Taxol treatment was 10/21 and I still have neuropathy which has sort of maintained at the same level. Last week however, two fingers on my left hand (not the side where the cancer and surgery was) now feel really stiff and sort of "locked" in the mornings. Has anyone else experienced this? Not sure if this is still the neuropathy or if it's arthritis.
It's not freezing cold where I am but definitely colder and it's causing an increase of pain in my feet as well. Keep on truckin' ladies!
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Hi Y'all
I have not been on the boards since I returned to work full time. Now that I am on my feet more I have noticed some occassional numbness in my toes and fingers during the day. However, I still get the pain and alternating cold and hot sensations at night. Its hard to get up in the morning with 3 hours sleep. Now that I have stop taking the percocet after the surgery my sleep pattern is as bad as it was when I was taking taxotere this summer.
Aerno - the end of chemo has no relation to the end of neurapathy. In fact, my symptoms did not get bad until a month after chemo.. Sorry for the bad news.
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aeryno, I thought I had escaped the neuropathy because it didn't come on until about 2 mos. post chemo, and worsened slightly as the weeks went on, both in intensity and in the actual area affected (on my feet.) My neuropathy makes my feet feel cold (when they are not) but when they truly are cold they do seem number and stiffer. To me it is a sensation of walking around on lumps of something that are not feet.
This is really maddening because I do have some hours/days where I notice I have more feeling, but it doesn't last.
I have had six of the Anodyne therapy now. I think I am done because of the holidays and I won't take this experiment into the new benefit year. Can't say that I noticed anything significant with having the therapy. The actual day I would get PT & treatment, my feet did feel a little more supple (tho still numb) but I get an equal or greater feeling of that when I get a foot massage with lotion.0 -
When I read your post I felt like I could have written it! I'm desperate to talk to others suffering from "be patient- it will get better neuropathy". When I began the taxol I was told it would "be a breeze" compared to the previous AC chemo - no one mentioned neuropathy until my second treatment when I couldn't feel my feet or hands. I was then told it was temporary and would go away quickly after chemo ended. Needless to say it's been 6 long months and it has gotten progressively worse. I am constantly dropping things, cutting myself and/or burning myself because I cannot feel my fingers. I have gone from numbness in my feet to numbness in my feet which has traveled up my legs to my thighs. I have no balance and must now walk with a cane so I do not fall on my face. I take folic acid, B complex, and high doses of gabapentin.....still no relief. I have days when my feet and hands feel like they are on fire. Is there anything positive to look forward to? Is there anything I can request of my oncologist? Can a neurologist help? I feel so broken.... was hoping to go back to work, but walking is a challenge and driving is out of the question. I welcome words of wisdom.....
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Dawn - I am so sorry you have joined us. Other than that - warm gloves and hand pumping are about the only thing that I know that helps. I am praying that it will be a short hall for you and it will get better. My sister seemed to have the same treatment as you with some of the same issue. She said as long as she kept moving she was ok. It is when she stopped that things got worse for her.
I didn't have chemo but have knife stabbing pains in what is left of me breast plus lymphedema in my upper arms and breast/shoulders. Have you noticed the burning getting worse with the cold? I have been snowed/iced-in for a week and this bitter cold is making my breast and arms burn - like they are on fire and you can't put it out. I was able to take the timed-released version of Gabapentin - its called Gralise - I went from 1800mg to 900mg - It helped alot - The doc gave me a discount card for it with samples and that way it only cost $25/month. Unfortunately, for me - I am also suffering the dizzy and nausea and doc is taking down to 600mg and the nerve pain is back
. I would actually suggest you go to a pain management doc. They know all about pain and pain meds and helped me more than my oncologist. In fact, all my docs now say, "if you have Pain lets let your pain doc take care of it."0 -
Dawn,
I'm sorry to hear you're having such a hard time. The taxol seems to have hit you particularly hard. I know exactly what you mean when you say you feel broken.
I can't offer any solutions--my numbness, while not as severe as yours, hasn't improved any since it started during treatment (it began with my second taxol infusion). I've tried acupuncture, Cymbalta, and Gabapentin, and got no relief that would balance the side effects I experienced with those drugs. (The acupuncture was lovely, but didn't touch the neuropathy.)
I agree with GmaFoley--a pain doc may be able to help. It's worth a try. I know how exhausting all these efforts to be heard and find relief can be.
I think this is an area that's just beginning to get the attention of the cancer community. More survivors living longer and dealing with these permanent SEs that are really life-altering. So keep talking to your oncologist.
Hoping you find some relief.
Ann0 -
DawnMix, your post just made my heart bleed because we've all been there and heard that. I wish they would stop saying that crap, it just made me so much more mad when it wasn't a breeze, and I've had permanent disability from the neuropathy. I did find with time (a lot of time) my other senses compensated for balance. I still fall over if I close my eyes, I really depend on sight for balance now. I also use a lot of feedback for proprioreception from my ankles so can't wear boots and walk as well, my ankles have taken over what my feet used to do I guess. I still wouldn't dare climb a ladder, and I'm really careful on uneven surfaces, going up and down stairs etc. Usually there is some improvement with time. Basically they say at 2 years you'll know how much you'll get back, and where you end up at two years is how much neuropathy you'll have. I found that to be true.
My pain doctor did a work up similar to what a neurologist would do. It seems to vary center to center who takes care of neuropathy pain, a neurologist or a pain doctor. Just a little relief from the pain meant I wasn't as tired, slept better, and could be more active. So, I echo everyone above in saying I'd ask your onc or PCP for a referral to someone who knows about treating neuropathy.
AND UGGGGHHHH this cold weather is making my neuropathy so unhappy.0 -
Thank you both for your words of encouragement. It helps to know that I am not alone in this fight. I feel so guilty with this situation.... I should be thrilled that I won the battle with breast cancer but I can't be thrilled because I feel like I lost the fight. I had no idea that chemo had so many lasting and life altering side effects. GmaFoley - the cold makes the numbness worse - I feel like I have no feet, just stumps I'm trying to walk on. When my feet get warmer (like after I've been in bed all night) my feet and hands burn like a fire I cannot put out. My radiation nurse told me about the hand pumping - although I do it often it doesn't seem to help much. Ann -I will speak with my oncologist about a referral to a pain management doctor and also about maybe switching to Gralise. I believe you are right - this appears to be an area that has not received much attention to date - hopefully with brave women like the ones I have read about here more answers and acceptable treatments will be found.
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