Vent about Permanent Neuropathy
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Gingerbrew, I am not aware of the neuropathy from the other drugs being permanent, but there is a phenomenon called "coasting" in which the neuropathy from taxol or taxotere can seem to get better for a short time, then get worse over the next few months. I finished TC x 3 in Nov 2010 also, could not complete because of the neuropathy, so had AC x 1 instead of TC for my final treatment. The neuropathy improved a little, then in Jan. 2011 got progressively worse. I started tamoxifen in January also, and the combination made my life mmiserable, so I discontinued the tamoxifen (told my MO, she was not happy, but was aware of it, so when I had recurrence this summer, she considered it NOT tamoxifen resistant). Anyway, you might want to see a neurologist, a neurotoxicologist, or a medical toxicologist to get it sorted out. I am seeing a medical toxicologist who understands the mechanisms of nerve injury due to LOTS of drugs and chemicals, and she has been more helpful than the neurologist or MO. Best wishes.
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River Rat, I found my PCP was often the most helpful physician for the practical advice about just getting me back to feeling a little better.
Linda, its been awhile, the one was a compund script that I dont remember the compenents of, we also tried lidocaine patches. It is the MO nurse I've kept my anger at regarding the neuropathy. I have a note from after my first chemo round that I got a copy of. In it she pretty much makes fun of my complaints about my toes and belittles my thoughts it was due to chemo. I'd like to smack her silly some days because I didn't laugh then and I sure the heck am not laughing now., especially every morning when I try to walk.
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Linda and kmmd thank you for the information. It's nice to think that some help might be available.
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Thanks to everyone for sharing. It helps to hear other stories about neuropathy. I finished my last chemo on 8/9/11 and still have symptoms in my hands and feet. I don't have pain really but mine feel hypersensative and I have some loss of sensation. I take Gabapentin (Neurontin) 2-3 times a day and if I miss 2 doses it is noticeable. I too heard from my MO that this is just temporary - "the nerves take time to regenerate Nancy" - I'm an RN who is married to an Internist and I have worked in his office for 27 years so I know something about neuropathy but this isn't painful as many of you have described. I try to have a positive attitude and continue to hope that this will improve slowly over time but. Some days I can't tell if it's actually better or if my body is just learning to cope with it better. Thankfully I have not had to return to work yet but I dread the day that I do. For me, my husband also has two chronic illnesses and requires much more care than I do so I often have to put myself on the back burner to care for him. I have my first 3 month check up today and will talk about trying Lyrica instead. Keep the stories coming ladies - it is a great source of comfort to read them all.0
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I've had neuropathy in my feet since February 2009, it doesn't seem to be getting any better. I take 300mg gabapentin 2-3x a day which makes it tolerable. I wouldn't be able to sleep at night without it. My family Dr (not onco, who doesn't really care) says I may have to take it for the rest of my life. Temporary? certainly not in my case.
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Hi,
I just found this thread. I finished chemo in September and my neuropathy, mainly in my hands, is really getting me down.
Something happened last night that really frightened me. I woke with a numb right hand - I tried to massage it and my arm (I also have arm pain) but the pain got almost unbearable in my hand - especially my middle finger. It eventually eased but not before a lot of tears. Has this happened to anyone. Is this normal for us following chemo?
It's especially horrible for me being a professional musician, an oboist, as my playing is affected. My tongue is also effected which again, affects my oboe playing. I am so afraid that I'll have to give up something I love doing.
I take amitryptaline, 30mg at night. During the day, 75mg of venlafaxine (Effexor) and 75mg twice a day of Lyrica (gabapentin).
Please help if you can, or share your experiences if they are similar. My family doctor just does not seem that interested and my oncologist keeps saying "it will go away".
Thanks for any advice or comfort.
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I am sorry you are having neuropathy in your hands and that it has an effect on your professional life.
You may want to read back in this thread to where someone discusses going to a neurologist and other professionals who may have a better handle on the SE's of treatment. I finished chemo in October of 2010 and my neuropathy, feet and hands, has not gone away. I use Effexor at 150 mg once a day. I got afraid of the neurontin because I read that some people have a brain fog from it and I had so much already I didn't want to take a chance. I may go ahead and try it because the brain fog has lifted because I am on a break from Arimidex and going to go onto Aromasin instead. I will wait and see how the aromasin effts me first.
If I were you I would seek more help now. I have heard the accupuncture may help. It was recommended to me by my Onc, my Onc's nurse, my therapist/nurse practicioner and also my Rad Onc. I have not tried it yet but I would if my career depended on my hands. I pray you will have success at finding a solution and that your neuropathy is one that "goes away".
Hugs Ginger
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Oh, Lifelover, I so feel your pain. I am not a professional musician, but a professional musician-wannabe. Before chemo I played piano, was starting to learn fiddle & autoharp, and also played French horn. My mouth, teeth, and face were affected, my arms were so painful so the horn was out, and the fingers are a problem. I am on computer keyboard most of the day for my profession, writing, emails, etc, so my work has also been adversely affected. I miss the music in my life.
I am working with a toxicologist who really "gets it" and understands the variety of mechanisms that can cause the neuropathy. She has been the most help to me. I saw a neurologist who specializes in diabetic neuropathy, and she offered me the usual treatments for that, but didn't really investigate the literature of what works with the chemo-induced PN (CIPN), whereas the toxicologist did. My PCP is also helpful, she completed a fellowship in palliative care, and she really works with me as well. My MO just didn't recognize it early enough to discontinue the chemo - I am not a complainer, so when she asked if I was having pain or problems "doing my buttons" I just said a little, not much, even though it was very bothersome. After the second cycle, I was crying in so much pain that my DH actually called her, and after that I have been a real complainer, rating everything at 8-10 rather than 3-4 that I used to just so I get some attention. Apparently if your pain is less than 7 it is supposed to be "tolerable."
So call your MO and let him/her know. And insist that an adverse drug report be filed with the FDA, especially if it is interfering with your profession!!!! These adverse affects are unacceptable to many of us, but we weren't adquately informed about them. Keep bugging them. Don't let them get by with brushing you off. I see you are in the UK and it might be more difficult for you, but remember that the squeaky wheel gets the grease, so don't just give up!
As Gingerbrew mentioned, accupuncture has worked for many, especially if you don't want the SEs of the other drugs. Mindfulness-based practices for pain can be helpful in dealing with it - doesn't take it away, but does help keep a more positive attitude.
One thing to be aware of, and that they might not tell you, is that if you go on Effexor, it is a VERY difficult drug to come off of. I have been decreasing dose for two weeks, and didn't take it at all for 3 days because I thought I was at a low enough dose that I could safely do it then - I had discontinuing it approved by the neurologist, who said since my dose was so low I could stop it. Wrong. I went through withdrawal symptoms and lost a day to that until I could get the Effexor back in my system. I am weaning much more slowly, and the toxicologist told me to aim for being off of it by March, not 2 weeks!!! (I am just tired of the SEs from this drug.... have not had any luck with Cymbalta, Gabapentin, Lyrica, Tramadol, Celebrex.... arrghh! I cannot even remember them all, and I am just sick and tired of pills and SEs with more pills to treat the SEs etc.)
OMG, I am so sorry for writing a book here! Special hugs for my neuropathy sisters.
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Oh Linda, you tried to come off of Effexor in two weeks! Yikes that is way too fast. I was coming off of Effexor when I was diagnosed with BC. so I stopped and maintained at 75mg xr once a day. When I got into chemo and obviously was becoming depressed I went back to 150mg and have been okay there. My dosage before BC for a clinical depression (my Mom died) was 225mg a day xr. Coming off of that was simple for me because I did it over a period of 6 months down to the 75 mg. I previously mentioned.
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Just last week one of the women in my support group mentioned her neuropathy. She said the best thing she has found is a medical marijuana salve.
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I have to admit I am wanting to make some jokes just now, but I won't. It's difficult though.
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Not much helps my neuropathy either. Dang feet hurt so bad some days. I take Oxycontin, Flexeril and Ibuprofen. I have tried Lyrica and Neurontin and some others...none worked. When my feet hurt about the only thing that helps is for me to get in my recliner and get my feet up for about an hour or 2. I drop things alot and have to remind myself to hold extra tight to hot dishes etc. I can crochet but do drop my hook often but I can still do it. I gripe about it and it makes me feel better for awhile LOL. I am stage 4 so I kind of look at it different maybe. I'd rather be here griping about my aches, pains, not being able to work, not being able to run, etc etc...than to be gone from this world. No matter what our stage tho...it still kinda sux. HUgs and luvs, Mazy
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Thanks friends!
Ginger, I spoke to my acupuncturist about whether he could help me or not and he says there is no scientific evidence but it may help with the joint pain. I decided not to try it because I would have to pay for it myself but I think I may give it a try anyway - who knows, it might help some of my symptoms and cheer me up a bit.
Linda, I did see a neurologist who was a pain specialist and the best in London, I was told. He prescribed Lyrica but nothing more. The problem is, that there is no cure, and I can only hope that it gets better with time as I'm only 4 months post and from the posts above it seems that it gets worse about now before it gets better. I know what you mean about not being a complainer Linda - this got me into trouble when I was in so much pain and didn't have anything to take - I learned to speak up and tell my family doctor what was going on so he could help me.
I'm very hopeful. And I do lots of Pilates to keep moving. Positive attitude helps too
Hugs to you all.
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Just wanted to add that I spoke to my mom yesterday, and she is trying acupuncture for the neuropathy in her feet. I wouldn't be surprised if it works. I will keep you posted.
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I'm not sure how old many of you are, but I'm 53 and trying to cope with menopause along with neuropathy so some days I just want to be alone on a far off island with no one to ask me to do anything or be anything. I have had a very positive attitude about the cancer right from the start but the mood swings and the constant "irritation" of the neuropathy are bringing me down many days. Not to mention I live in the NorthEast where the weather is cold and miserable now. If this thread is a place to vent then I pick here to share my misery with all of you who know just how I feel. I log on often in hopes of finding a post by someone who has a new miracle cure to share - LOL - but I know realistically that is just not going to happen. My nursing background also tells me that damage to the nerves is more often than not permanent if it hasn't markedly improved after a few months of being off chemotherapy. I even tried Reiki recently which didn't do anything so I am reluctant to try accupunture. What I do know, both as a nurse and a patient, is that one treatment or drug that may work well for one person doesn't neccessarily work for another but sharing possibilities is always worth a try. Here's to taking one day at a time and learning to enjoy what we do have instead of wishing for what we don't. Hey......it's a thought.
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I haven't posted in a while. I went off the lyrica. My brain feels better off it! Weather does play a huge roll in our pain. I live in the South and for me heat makes mine throb worse. Also changes bring on the lighting strikes that make me scream out in pain. It seems my body prefers 68 degrees. Anything above at night time I can't sleep. Anything below 66 my feet feel like they are on ice. I can manage it during the day but not when I need to sleep. I may have to go back on something when the hot weather comes but for now I am dealing with it all on my own.
The past two weeks it has really bothered me. My Lymphedema has moved into my legs so the calf has been wrapped for two weeks now. I can't wait to get my garments and get out of these wraps.
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Nancinurse, I'm right with you . . . searching for that elusive cure . . . trying whatever is recommended knowing that some of the damage could be permanent.
KittyDog, I know what you mean about the Lyrica. I'll give it a couple more months but I don't like the "brain fog" it gives me.
I have an appointment for acupuncture next week - will let you all know if it works for me. Even if it helps the joint pain, that is a big plus at this point. Oh yeah, I also have a Reiki treatment tomorrow. Hmmmmm . . .
I'm going back to work next week - teaching pupils musical instruments - something I love. Really hoping I'm up for this big challenge.
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Lifelover, good for you! I find that my students energize me when nothing else can. It is great to be able to help them learn new skills.
I am doing much better today, on half a capsule of Effexor a day. I am emptying the capsule onto a saucer, separating the granules into half (eyeballing it - I don't have one of those fancy scales we used back in chemistry lab that weighs in milligrams) - put half into a sealed plastic container so the cat doesn't get them, and take 1/2 with a bit of peanut butter. We used to put our dog's medicine in peanut butter and it was a treat for him, and now I know why!
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I take OmegaXL and it does help with my knee pain. I had started taking it in hopes it would help with back pain. After 2 months I noticed my knees were 90% better. OmegaXL also keeps my bowels moving on a regular basis...something I had not expected from fish oil LOL. HUgs, Mazy
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Hi, all. Have been off Effexor for about 2 weeks. Discovered the SEs they listed in my medical record were SI/HI. I got to wondering about it - think it means suicidal ideation/homicidal ideation. I don't remember telling anyone I was homicidal, but who knows what I might have said out loud while I was on that particular poison. In any case, those ugly thoughts have passed, and I am now back to fingers feeling numb but not really being numb. Very odd, but at least they don't feel "creepy" and I am tolerating soft fur of my kitty and touching other human beings. Have been able to play piano for 10 minutes with just prolonged tingling but no pain afterward.
Pain in my right arm from ALND has been excruciating, and am trying a lidocaine patch for that. Seems to be helping - this is day #2 - am being hopeful but not too hopeful as I don't want another disappointment. Still using topical cream for my fingers, wondering what it would be like to have my 2 hours a day back (hour in the am, hour in the pm to get this stuff rubbed in and abosrbed), wondering if it is doing much for me, too scared to not do it for now. Talked with the neurologist about slowly weaning from it, and she said that would be OK, just whenever I was ready and do it slowly - can always go back to it if needed. It has been only 16 months since last chemo - I know I was told after this unfortunate SE occurred that it might resolve in 18 months or never..... and me being the nonpatient psessimist curmudgeon that I am want it to be completely better when I go off the meds and fearing that it won't be and wondering how I will deal with it if it still is a problem. I know my symptoms are not nearly as severe as some of you have, and I am grateful for that, but still not grateful that my life has been "saved" at the expense of doing those things that made life enjoyable. Will I ever find joy again?
I am reading a book about faith and joy, hoping that helps the emotional/spiritual issues that go along with these miserable physical issues. (Between Mirth and Heaven, by Thomas Martin, SJ)
Offering up a prayer from my heart to yours for healing, peace, and a little joy.
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Linda, and I'm offering up a prayer that the Universe sends back that healing peace and joy much multiplied.
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kmdd, many thanks!
The lidocaine patch is working pretty well for my hypersensitive skin at the back of my arm from the ALND! I have not had to take pain pain pills for over a week!
So GI system is all back to normal, too!!! (Well, I HAVE taken a few tylenol or alleve, but that was after starting yoga again.)I have been not using the Rx cream because I had hangnails, my nails look terrible, and the stuff makes my cold hands even worse, and takes 45-60 minutes in the morning and another 45-60 minutes in the evening. So now my fingers are tingling again, are hypersensitive, yet feeling numb and clumsy. Guess I will get more religious about using the cream again. *sigh*
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I have had neuropathy in my feet now for ten years. I tried amytrpoline 'neurontin but lyrics has been the best. I also had acupuncture which helped get the blood flow back to my feet. I am once again going thru balance training. I guess I just need to do that every so often.I am worried that the benefits of lyrics wear off.I have been on it for 8 years now and my feet are starting to hurt more.
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SoCalLisa, I couldn't tolerate any of the oral meds - I think I tried nearly every one of them. I started acupuncture this week, have it scheduled once a week for 6 weeks - did you find that was enough? Too much? Need a tune-up periodically? I didn't get any immediate changes after one treatment, wonder how many are needed to see a difference. Thanks.
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It's been a long time since I've posted anything specific about myself, or to anyone else, on any of the forums... Other than various articles of interest to share.
Getting back into it has been difficult emotionally for me - both my parents passed away last year. First my Mom, in July, followed in two very short months by my Dad, in September. This was more difficult than I had ever imagined it would be. My Dad would love to read anything I wrote. He would read them out loud to my Mom, as she could no longer see. Dad would share them with anyone he would encounter. He always told me he was proud of me. So, whenever I start to write, I think of that. Up until now, that was holding me back. No longer can it be my excuse. Instead, it will fuel me.
The day to day work load has taken its own toll. I was fortunate with my employer and management regarding my special needs. That actually lasted about a year... Changes in desk setup, changes in work hours, working mostly from home. I have now gone on full disability. I was a "worker bee" pushing through the days and evenings. Unfortunately, it began to take me 12 hours to complete 8 hours of work. The stress becoming more and more concerning. It's taken me several months to get used to not forcing myself beyond capabilities. I have a new stress, and that is $. Disability only nets about 50% of what I had been able to earn. Sad. But we are working through it, making changes, and making it work.
Enduring the nerve pain, tingling, electricity, numbness, weakness and overall discomfort is what we do, 24/7. It is down right miserable. It sucks. We try hard to not be as visibly miserable to others, as we want them not to suffer along with us. We want them to want to be close to us. We want to be able to do the things we loved. So we find a way. Being miserable and defeated does not invite many people to remain close. We want to be happy. For the most part we are. We want to be "normal" again - like we were before. That's not gonna happen. I understand that, but I don't like it. As none of us do. The Internet has given us many avenues to obtain information, and very importantly the ability to find others who are enduring the same miserable symptoms as we do. Wow... We are not alone! We have others we can vent to who do "get it"!! I can't imagine how difficult this could have been for people 25 years ago.
I would love if we could somehow share our new found disabilities and physical feelings with our medical care givers, employers, insurance companies, our government, research grant holders, family, friends, etc., who truly don't understand how this type of nerve damage feels. If we could share exactly what we are feeling with them, so they could have a true sense of how this affects us, then they would "get it". Just share those physical feelings with them like a Vulcan "mind meld" for a short time. Brilliant!!
In another forum, I read from a woman who did not have BC. She is a victim of soft tissue sarcoma. She has RIBP from her related radiation treatments, and found a thread to post for support. Shows that radiation damage is not only affecting BC or Hodgkins Lymphoma survivors. And it adds to the many of us who are looking for help. Looking for answers. Looking for changes for future treatments. There must be some way the Brachial Plexus can be preserved throughout radiation treatments. There must be some way to ensure our lives are ridden of the cancer, AND ensure the life saved, can survive with the highest quality possible.
The more collective voices we have, the louder we become. The louder we become, the more opportunity to be heard.
My Oncologist's PA talked with me the other day. We discussed my issues and damage from the chemo and radiation. She, recognizes the need for continued care of the survivor. She told me that this need is finally escalating. And that she would love to be a part of it. Is that not the best news!! Think about it, a clinic or Dr we could go to after the Oncologist turns us loose as a survivor. Someone who understands a "cold" for us is different then all other patients coming into a primary care physician. Someone who is extremely knowledgable of cancer survivor needs. Incredible! I believe we are making headway!
I have tried the Neurotin and Lyrica in the past. They did not help my pain and tingling.... They did make me feel spaced out. Didn't like that so much... I take Cymbalta now, 60 mg twice a day. It really takes the edge off of the intense "zinging" electrified pain I have all day. Brings it down to a more tolerable level.
I made the mistake of allowing the prescription to go down near the end of the year. I actually ran out in that window of time between the old insurance and the new insurance picking it up. That's when I realized just how much it was helping. I was so miserable from the constant pain and lack of sleep. I hope I never make that kind of error again.
Lifeover - I am so sorry to hear of the problems you are having with your ability to play the oboe. Our professions are also our lives, and most often what we love. I lost the ability to play guitar... Something I enjoyed since I was 12. I also thought I lost the ability to sketch with graphite pencils. I am right handed and can no longer hold a pencil or anything else on the right side. So, I have become one handed on the left. I picked up a pencil a few months ago with my left hand, and sketched. Surprisingly well. I can barely print with my left hand, but here I am sketching as well as I did with my right hand. It's harder to sign my name to my work, than it is to create it.
Being one handed in a restaurant can often be a challenge and also entertaining to others (and to me). The many times I had a bowl fly across the table, or a fork take a leap into the air, have been countless. :)
I was asked to write a short story for the Memorial Sloan-Kettering Bridges magazine, regarding my visit to the Rehab Center for survivors in August 2011. Here it is, in the Bridges - Spring 2012 edition.... Page 7, titled Surviving Survivorship. :)
http://www.mskcc.org/cancer-care/survivorship/newsletter-survivors
I hope everyone is doing well, and fighting the fight.
Stay Strong,
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Cindy, nice article!
My MO actually does listen to me, tells me she appreciates that I am willing to share my issues with her. She acknowleges but cannot truly understand because she cannot actually feel what I feel, but at least it's a start.
I have been taking about 12-16 hours to get 8 hours worth of work done, also. Very frustrating, very tiring, very discouraging. I don't want to quit working, but I am finding it more difficult to keep up, keep hoping things will get better. I am trying to hang on by my fingernails until graduation in May - then I get the summer off. Am not sure I want to go back in the fall, but am afraid of NOT going back.
Cindy, blessings to you for sharing, for paving the way, for pursuing answers. Thank you.
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Cindy I am glad you returned. I read your article and it is good. Actually I like what you wrote above even more. Losing both of your parents so close together is just a huge blow. It seems you have taken time to grieve by withdrawing from BCO for awhile. I withdrew into a profound depression after my mom died. I didn't know how to grieve properly, if there is such a thing? Your wonderful memories of your father are priceless, he showed you how proud he was of you in unmistakeable ways. That is such a lovely memory for you to carry along.
Thanks for writing. I'll be watching for you.
Ginger
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Cindy, thanks for the terrific post and sharing your emotions and experiences. It really helps me when others have so much to say that I can relate to.
Acupuncture has helped me. I've had about 6 sessions so far and a going to keep it up now ever two weeks until I get to a point where there is no improvement or I'm left with little impairment. One the "off" weeks I'm having cranial sacral therapy to help with my hot flushes.
Massage has also helped me. I get that every week. The muscles, tendons, ligaments - in my arms and hands - are also affected by the nerve damage from chemo. The sports therapist I see is exceptionally trained in these areas and works with pro athletes and musicians. I'm fortunate she lives near me!
All this costs money and I'm rapidly going through my savings. I went back to teaching. Something I love and feel that I have a gift for - my pupils really respond to my teaching. I worked about a month, called in sick one day and told them about 2 doctors' appointments I had and they asked me not to come in anymore. So, I'm now without my teaching work. Yes, I'm getting legal advice but in the meantime, it's hard not to be angry.
Anyway, I'm having breakfast in bed this morning and for today, am going to focus on all the good things in my life. I'm playing the oboe this weekend in 2 concerts and my hands and arms are holding out pretty well! Smile. Smile.
Wishing all of you more smiles
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I still have some neruopathy and I am going to tell you what you said you do not want to hear.
I changed oncologist and the second one let me have 600mg three times a day and it cleared up some old neuropathy that I thought was permanent. I used to have problems walking because of it. It is a very irritating thing to put up with. If your onc won't let you have a large amount og gabapetin, then go to a neurologist.
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ma111, thanks for this information! Does the gabapetin make you sleepy? How long did you have to take it once you got the higher dose? Thanks in advance!0
