Vent about Permanent Neuropathy
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At first it did make me sleepy, so take the largest dose at night. They uped it 300mg a week until it worked. I was very happy that some old neuropathy cleared up. I was unable to walk at one time. All is fine with the legs and arms now. I even had trouble typing because I couldn't tell if my fingers were on the key board. Oh yuck, the memories. I'm glad that is behind me.
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The only thing gabapentin did for me was help me gain weight. Too, the hot flashes down to nothing. But the weight gain made me stop it and the flashes came back. Didn't really touch the neuropathy. I'm always impressed by how differently everyone's own make up means how differently we respond to meds.
Sorry to hear about what you've been going through Cindy, but good to hear from you. I'm had to make some job changes too. Pushing and hurting yourself 24/7 gets old. When it is short term while you're in that group of patients who will get better it is one thing, but, when you're dealing with a lifetime of this and only getting worse because of the pushing it is another whole story
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Question - for those on Lyrica, did it make you gain weight? That's the biggest reason I've avoided it for years in connection with my Fibro. Curious cat here. The tinglies were there before BC although on and off. No medication treatment just yet, so hoping it doesn't make things worse.Thanks!
Sally
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Lifelover, I am SO glad to hear you were able to play your oboe! I still have dreams of getting back to making music, just going to take a little more time. And boy, do I hear you about the expense. This was not really what I had planned on spending my savings on either. I am just a couple years too young to retire, don't want to go out on disability, still enjoy teaching, but it takes a lot out of me. Hard choices to make.
Tonight my fingers are awful. I WANT MY FINGERS BACK!!!!
ma111, I am so glad you are getting results from the gabapentin. Some people need a low dose, but I have read that up to 1800 mg/day or sometimes even higher are effective. I couldn't tolerate it - left me unable to find words to carry on a conversation, couldn't put together lectures or give them.
As for Lyrica (pregabalin), about 9-10% of people taking it gained significant weight - about 10 lbs or more. It has a mile-long list of adverse effects, but as with most meds, they don't all occur in every patient, so it is kind of a crap shoot as to whether an individual will actually experience any of these effects. May be worth a try - you can always discontinue if SEs occur.
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Ma111 Was it the Gabapentin that made you unable to walk? Or was it the neuropathy that made you unable to walk?
Lynda did your faculties return promptly when you stopped the Neurontin? I have been afraid to take mine because I had such bad chemo brain and I am afraid it could become permanent.
I took Neutrontin for about 6 months after back surgery because I had the Sciatic nerve firing randomly after surgery as a SE. It hurt so very much the neurontin was like a miracle. I was 15 years younger then.
Any response could be helpful thank you
Ginger
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Ginger, it seems that any medication I have used takes a while to get out of my system - Neurontin (gabapentin) took several weeks before I felt like my fog had cleared.
I talked with my PCP today about the problem with fingers - she said there are MANY people on chemo (not just BC, but also other chemo regimens used for cancer and also bone marrow transplants) who get the neuropathy and bad fingers and that most MOs and other docs consider these "tolerable" SEs, but the patients she has talked with do NOT consider them "tolerable" but have expressed angry outbursts like "just cut the d*&*&*d things off!!! - not really meaning it, but trying to convey just HOW HORRIBLE this SE is. She says the docs "just don't get it". According to her, the new standards in cancer care include referral to palliative care at the time of diagnosis, not waiting until significant symptoms develop. Took me over 6 months and firing my original PCP to get in with my new PCP who is ALSO a palliative care doc.
So today, I am off all the oral meds for the neuropathy, miserable with the fingers, hating the drenching sweats and pain from the tamoxifen. She asked me what I want to do. She doesn't have a lot more to offer me - I am nearly ready to ditch the tamoxifen and feel at least a little better. But not yet. Tonight I am enjoying time with DH. Would like to spend a few more years with him, even with miserable fingers.
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Linda - do the Aromasin or Arimidex inhibitors work with your type of BC? They are supposed to be easier on the body and joint aches. I took both, finally ending on the Aromasin. Somehow I made it the full 5 years. I know how angry they can make our bodies. I understand how people are so frustrated and beaten by the pain, that they would say "cut it off". I often think about how could they make the brachial plexus pain from nerve damage go away? Amputation of the hand/arm probably would not help.... I believe the pain would still remain as phantom limb pain. It's the nerves in the brachial plexus that would have to be somehow numbed or removed in order to take away the pain... ? since that is where the nerve damage actually is in my case. I'm not in the medical field... But have paid many of their bills. You'd think they could inject some kind of pain blocker in the nerves damaged to help.
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Cincerly have you tried Neurontin. It worked dramatically for me about 15 years ago to stop the Sciatic nerve from firing randomly after back surgery. It was exceptionally painful when it would fire, it would cause me to wet my pants too. The neurontin worked! It stopped the firing totally, thank God for that.
I am about ready to take it for the neuropathy once I find out more about the brain fog it causes for some people. I don't recall it 15 years ago but I sure got it from Chemo so I am leery of it now. I do so want the neuropathy to go away or at least not progress any further.
Laters
Ginger
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Yes, I tried Neurontin and Lyrica. Both made me feel very foggy and odd-like in personality. The Cymbalta doesn't seem to do that for me any more than the regular chemo brain. Im glad it worked well for you with your back nerves! But, each drug seems to work differently for us individually. Hopefully, it will be a good drug for you again. If one doesn't work, try another and another, until you find one that helps he most. We take drugs for our nasty treatment SEs and then find we need more drugs for the new SEs. What a circle!
Stay strong,
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Cindy, thanks for the encouragement about the AIs. I had thought they were even harder on joints - I already have osteopenia, and was told the AIs would decrease bone mass, so would need to be on additional meds to prevent that, and those have more SEs that I am just not ready to deal with. Also, the AIs can have effects on cholesterol/triglycerides, which is yet ANOTHER problem. Am tired of being a physiology experiment to see what happens when we try one drug after another. *sigh* But maybe I will talk to the MO about this option. I found out today that I have cataracts - likely due to tamoxifen since I didn't have them when I started it. Am so frustrated with losing bits of me - fingers, eyes, brain function....You have been so brave and made so much progress in dealing with your life, and I just want you to know how much I appreciate you and your sharing here. I am aiming to follow in your footsteps if at all possible!
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http://hwmaint.jco.ascopubs.org/cgi/content/abstract/JCO.2011.38.0261v1
http://www.cancerpage.com/news/article.asp?id=11282
http://www.medscape.com/viewarticle/562672
Thought the above may be helpful informatin regarding the AI's. I thought especially the information that taking a break from them, switching to another one, or staring cymbalta can help.
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Having a rough day - neuropathy in fingers & teeth flared up very badly - not sure why. Teeth had been OK for a couple months, fingers bothersome but able to do tasks - now having problems washing hair & keyboard so much worse. Need to get a positive attitude before DH gets home late tonight - he has been out of town on business and left me alone for the first time in almost 2 years - need to reassure him I can do OK on my own. Does stress cause significant exacerbation of symptoms?
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Hi Linda,
I think that stress causes us to dwell on the more negative aspects of our life.
My onc said I should not be under any stress - even to be careful about joyful stress!
I understand what he means. There is a fine line between keeping occupied with tasks that engage your mind and overdoing those tasks to the point of exhaustion.
For instance, a good day for me would be a 1/2 hour walk, some household chores and shopping, some music practice and a music rehearsal.
It's important to not race yourself around trying to do too much or to set goals that are too high for your level of energy.
I hope that helps and I do hope you feel better soon.
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Hi Nancy,
I take a 30mg dose of Amitryptaline each night before bed. I was taking 10mg and then saw a pain specialist in London who told me that there would be no benefit at 10mg as 20mg is where a reduction in pain is noticed. I do feel worse the next day if I forget to take it.
I was taking Lyrica and it did help but I felt too woozy during the day so stopped it after about six weeks.
Weekly acupunture, massage and cranial sacral therapy helps me more than the drugs but in combination I am relatively pain free and functioning. I do trip and am clumsy because of my feet numbness but I don't have any foot pain. My pain is in my hands.
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Lifelover, the mention by the London Doc is so true. A shrink I saw for antidepressants told me that PCP's often do not prescribe psychiatic drugs to the level of efficacy. For example 75 mg of Effexor will not have an effect on depression. I think more education is important if PCP's are going to prescribe drugs not in their speciality. Thinking you are being treated and the treatment isn't working is a bad deal.
Ginger
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Well crap, so this neuropathy I have could be permanent? I finished chemo in October and it has pretty much stayed the same since, maybe a little better, not as bad as some of yours but definitly annoying! I have to be careful with stairs, i can't feel the steps so I have to look down. I have a hard time opening things and get very dropsy! fingers feel kind like they are frostbitten all the time. I can type, but writing is alomst impossible for me. I had severe fatigue with chemo and am now doing radiatin. My doctor put me in a program called ACTIVE where you do very easy, low intensity exercise, making sure not to push it or overdo it and it is helping with the fatigue, but not the neuropathy. Last time I had chemo and radiation I wound up with an underactive thyroid and was tired like you wouldn't believe for months, they finally figured it out and put me on medicine and I felt better within a few weeks. Have any of you had your thyroid checked?
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bak94 I too ended up getting treated for hypothyroidism after chemo. I think the chemo burned out a lot of things. It took a couple of years before my Onc was willing to admit the neuropathy was permanent.
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bak94 and kmmd, I've been treated for hypothyroidism for the last 15 years. It was as a result of radiation treatment I had in 1994. I take 100mcg and have my bloods tested fairly frequently in case it is too much or too little.
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Lifelover, thanks for the reminder about stress.
I am distressed (anger, fear, sadness, grief) each time I walk by my garden and see a weed that I would normally just bend down and pull, but now I debate the cost - how much pain do I want in my hands for that one simple easy task? And so the weeds continue to grow..... Am still so angry at times, but am working on it (the anger, that is).
Have filed request for reduced workload, and was granted release from all responsibilities except finishing teaching one class. Am sad, but relieved.
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Thinking of all of you, hoping for the best. Sitting here angry and depressed (again) about my fingers. Nearly finished typing a final exam,took me all day several days for a one-day job, lots of mistakes due to fumbling, fingers tingling a lot, numb on the tips. The topical cream was taking over an hour in the am and an hour in the pm to get rubbed in, so my toxicologist worked with the compounding pharmacist to increase the concentration of the meds in the cream, so I wonder if one of them is increasing the numb feeling; but it sure is easier to get 30 minutes in the am and pm done. Still angry at the MO who SHOULD have recognized the first problems with neuropathy with the first dose of chemo, SHOULD have reduced the second dose, SHOULD have NOT given the 3rd dose and SHOULD have talked to me about CHANGING treatment, with some reassurance that CMF is ALMOST as effective and LESS TOXIC than TC. She SHOULD have made recommendations based on the life values that I told her about and based on the risk of permanent damage. How do I get past the anger?????
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Hey all - hi Linda - so sorry to hear about your symptoms. Neuropathy is terrible.
I hope you all don't mind me posting on this thread. I read this thread b/c I am worried about developing neuropathy (have had one TCH). No symptoms yet. I am taking supplements (B6, acetyl-L-carnitine, L-glutamine) to try to prevent onset. I've read an article or two that showed that acetyl-L-carnitine helped reduce symptoms in patients with diabetic neuropathy - so it appears it may have some benefit in treatment, not just prevention. This may have already been discussed and tried by you all, so I apologize if my post is redundant...but thought I'd share just in case. My best wishes to you all. I've treated patients with neuropathy before (I'm a PT), so I know how debilitating it can be...that is why I fear it so. I hope you are able to find some relief of your symptoms.
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Hi Linda - I understand how you are feeling. Being a musician with neuropathy is very frustrating. I have quite a few problems and some of them are helped by weekly massage - but it's expensive as I see a specialist who works on my hand and arm problems. It seems that your oncologist may be like mine in the sense that saving my life was more important than my career as a musician. He didn't even want to argue about it - told me to take time off from playing which I will not do. I feel that I must learn to deal with the permanancy of the numbness and tingling.
Thanks Dancetrainer for reinforcing what others have said about supplements that show promise. I haven't tried acetyl-L-carnitine or L-glutamine yet mostly because of the cost. Perhaps I'll ask my GP if he can write me a script for it as it will cost nothing then: I get all my meds at no cost on our social health care system because I have low thyroid.
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Linda, for me it was time. It still flares. I'm in the same boat. I actually have a copy of the note after my first chemo round when I complained about the neuropathy and in the note they ridicule the fact I asked about the possiblility of neuropathy after only one dose. Well, I was right and I wish I wasn't. It was bad enough they didn't listen, but, they made fun of me for it, and now I'm the one living with it. The person who wrote that note isn't even there anymore. I don't think I got past it, I just got worn out being angry and don't have the energy for it anymore.
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A visiting Dr from South America told me it was impossible to get Neuropathy with Aromacin and Cytoxin. My Onc told her it certainly was possible. THen when I started on Taxol after the second treatment is when I was walking around the house with my booklight IN my slippers and I couldnt feel it at all. Onc took my off chemo immediately. Unfortunately it appears it is permanent. My fingers are partly affected but my feet are numb and from time to time the monster electrical burning shock sort of thing happens in my toes. I can put up with a lot of annoyances but I sure wish I could get rid of that particular SE.
Hugs Ginger
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I feel bad for all of you and thank you for sharing. I have neuropathy bad in fingers, hurts to type and hands go numb and tingle frequently. Tops of feet-bone just below big toe toe nail, anyone have it swell and turn red to bright red? My feet hurt too, have to wear at least socks, FitFlops are nice looking flip flops (Nordstroms) the top of it does hurt a little,but easy to wear and very comfortable. I also am freezing to death, I shiver really bad and feel like I live in a freezer. My house is 75degrees. We were in the caribbean in Feb and I went in the water in Aruba, by the time we got back to the ship my feet were bright red and my ankles were really swollen. Looking back I wish I would not have done chemo. I too cannot tolerate the drugs, tried Tamoxifen for 8 weeks and froze so bad and neuro issues had to stop. Accupunture hurt really bad and left holes where the needles went in, after 5 treatments finally stopped going the pain and cold were too bad to tolerate. I hate getting in the shower, I freeze and the water hurts. I am ready to quit work so I do not have to deal with feeling cold and showering everyday. I sweat really bad at night because I freeze (no matter how many sweatshirts I wear) our bed has a heater and is turned way up, I cannot tell. I am tired of freezing all day at work, it wears me out. I tried doing water aerobics in a 98degree pool and froze in the pool. I did enjoy the exercise though. I am finding if I walk over 20 min or stand on my feet very long the nueropathy gets worse and I get colder.
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Cindy, very nice article, I appreciate your sharing it. Anyone tried "Arnica cream"? If it wasn't for the neuropathy I would still be in denial that I had this disease and life would be good again.
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Greytcruise, have you considered going to a pain specialist? There may be other treatments that could help. You also might want to post your experience in a topic that is busier, I don't know which one. The Side Effects from AI is one that Ican think of. You need some relief from this freezing.
Sending you hugs
Ginger
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Greytcruise, did you lose a lot of weight with chemo and treatment? I have similar problems with being cold all the time, thyroid is fine (had that checked). I talked with an integrative nurse practitioner about the concept of "adrenal fatigue" that I had read about - she is very open-minded about lots of possibilities, but said this is probably not a "real diagnosis" but certainly constant stress (such as being in treatment and having persistent neuropathy) can really wear us down and interfere with our major stress hormones, which also control body temperature. I lost 25% of my body weight and couldn't gain any back while I was on tamoxifen, but have seen some improvement in the last couple of weeks (have been off the tamox for almost 2 months). All of my symptoms get worse when I am tired, so rest is really critical. I also have seen a medical toxicologist who writes a prescription for a topical cream for my fingers that seems to be helping. None of the medications that the neurologist prescribed for me worked - she is an expert in diabetic neuropathy but not chemo-induced, and the meds just messed my mind up terribly. PM me if you want info on the topical cream. The medical toxicologist has been the most helpful so far as the MO, PCP (first one, not my current one), and neurologist just didn't help much. I agree with you that if it wasn't for the neuropathy, I would be able to move on with life. As it is, life kind of sucks much of the time, and I also wish I had never done chemo. Won't do it again - sometimes feel like I am just waiting for the cancer to come back and offer me a "graceful escape." Most of the time, I try to find "moments of grace" each day and enjoy those moments for what they are.
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I was on FEC and had bad SE but when I we went on Taxotere omg it was bad like everyone has said. My onco took me off it and put me back on FEC so I only had one. If she hadn't taken me off it I wasn't having anymore, no way.
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Moments of grace today: remembering that others are hurting and that I can be of some comfort. One of my dear friends has MS and has been unable to participate in a Thursday morning study group that she dearly loves because of fatigue and weakness. Keeping her in love and kindness, and promising myself to call her but not tire her with prolonged visit.
Ali68, so glad your MO backed off the taxotere when you had SEs. Hope the does the job and hope your SEs are less. How many more do you have? I think that is flurouracil/epirubicin/cytoxan? Can't remember all the list I was shown when I agreed to TC - remember that CMF was supposed to be less toxic but also less effective. Of course, as one of my sisters says, statistics just doesnt make sense: it's always 50/50: either you get the SE or you don't, either it works or it doesn't in the individual case - stats are based on POPULATIONS.
Right now I am personally working on the 50/50 rule, doing what I can to boost MY INDIVIDUAL immune system to fight off any cancer cells lurking and not worrying about it too much otherwise. Most of my effort is into gaining some energy & strength back so I can walk, hike, play music (not piano or strings unfortunately), find things I can do that do not involve prolonged tapping of my fingers or fine touch.
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