Vent about Permanent Neuropathy
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I hope that we can all find relief after enduring so much physical stress on our bodies. The side effects from multiple cancers with many cycles of chemo and radiation sure does give a beating.
I hope that y'all are on Facebook - so that you can check out my page devoted to these kinds of side effects - Please view the page and be sure to click the "like" button, as Facebook will provide me a direct url link for the page if I can collect enough who actually "Like" the page. that alone will help get us more visibility and hopefully more responses from the medical researchers. They need to know we are out there... they need to know it needs research funding... we need to give them our voices.
I started a facebook community page titled "Surviving Survivorship - Breast Cancer Treatment Nerve Damage".
Created for the voices of cancer survivors, who are surviving survivorship, with chemo and/or radiation treatment related side effects. Specifically, Radiation Induced Brachial Plexopathy RIBP and/or Chemotherapy Induced Peripheral Neuropathy CIPN.
This facebook community page is dedicated to the cancer survivors, who are surviving survivorship. Geared towards giving us all a voice.
My hope for this page, is to help others who have been experiencing nerve damage symptoms following their cancer treatments. Sharing their own stories of how this has affected their quality of life, how it has affected their families, caregivers, friends, ability to work, to play, to live. Providing a place for us to share ideas, helpful hints, encouragement, collaborate, post links to medical articles and useful informative related reading. A place to come together, not feel alone, and be strong. Similar to this forum, and others like it - it's just another avenue to communicate.
To find the page, log into your facebook account, and in the Search field at the top of your facebook page, type in "Surviving Survivorship - Breast Cancer Treatment Nerve Damage". After you visit, be sure to click the "Like" button, and it'll add to your news updates when someone posts comments or information, or links of interest.
Hope everyone is well.... Stay Strong.
Cindy
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Michael D. Stubblefield, MD has got it goin' on for us! He terms these RIBP survivor complications "radiation fibrosis syndrome".
http://www.mskcc.org/prg/prg/bios/666.cfm0 -
Correction - Dr Stubblefied is not speaking of RIBP - he is speaking of RIF. Two very different diagnoses. My error.
I got the following info from my friend at Step Up, Speak Out - RIF has been shown to respond to trental and Vitamin E, especially when treated early. But RIBP, unfortunately, doesn't. Here's a section with recent trental/E studies:
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#drugs tren0 -
Nancy, taxanes, including taxol and taxotere both cause neuropathy in over 50% of those who take them, and it usually resolves, but only 5-10% end up with severe problems. That doesn't seem like a lot except if you are one of the 5-10%! Your docs should look up the drugs they are using!!!!
My MO told me that T/C could cause neuropathy, but that it was usually mild and could be managed. She was wrong. Now both she and my PCP tell me it probably won't ever get 100% better. I am angry, sometimes bitter, and much of the time am NOT grateful that my life was "saved" as I might have survived anyway without the chemo! But I was led to believe this was my best "choice." I now have lost the ability to do fine needle work, play piano, type, garden, etc. I can no longer function in my profession, which requires manual dexterity. I hate eating because my teeth and mouth continuously tingle and are painful. Things are much worse when I am tired or stressed. I have asked my MO to submit an adverse reaction report to the FDA, but don't think she has done that yet. I believe anyone who has had this SE, and to this severity should DEMAND that their doc submit the report, and if they don't, there is a place for us to do it. You can find info at http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm
I have tried several pain meds, neuromodulators, antidepressants, none of which worked and all of which messed with my brain so badly that I could not think straight and was even more miserable than I am with the neuropathy. Right now I am trying a topical cream that has been used in a recent study by Dr. D. Barton for CIPN. I posted the reference on another thread:
http://www.ncbi.nlm.nih.gov/pubmed/20496177
Dr. Deb Barton has done a LOT of research on quality of life issues for breast (and other) cancer survivors.
I had one acupuncture treatment, ended up with a severe bruise and pain on my left elbow that lasted over 2 weeks, so am a little hesitant to try it again, but am considering it in light of some of your comments above.
kmmd, thank you for starting this thread because I really needed a place to vent. I, too, am fed up with being told to "be patient" and "be grateful you are alive" because some days I just am NOT! That being said, I DID have a good day today because I discovered that I CAN still use paint brushes and went to an oil painting workshop and truly enjoyed it!
Linda
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n3ypb, you're welcome, that is exactly why, it is such a knee jerk reaction for people to say "it will get better mine did," and if I don't come here and vent I'll say "what makes you think your experience makes you an expert." and since that really isn't very nice I'm happy to have this thread
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I don't have neuropathy but when I asked my MO about it when discussing chemo, I was told chemo wouldn't be a good choice for me if I was a "concert pianist". It does seem that all they think we care about is losing our hair.
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Oh my I will rant too. I have my MO appointment three weeks ago. I too rarely see the Dr. mostly the NP. I was asking if she thought my swollen legs were a side effect of the Lyrica.. Her reply. Your neuropathy should be gone by now why don't you stop it. Ugg she didn't even really know the medicine because it has to be slowly stopped. She said cut it in half...umm it's a capsule. Then take it every other day. I told her but my neuropathy is not better but I will give it a try. Yes Lyrica was causing the leg swelling and I didn't last two weeks of going every other day. Just let my hands or feet get warm and that start burning. It makes me wonder do they listen to anything we say? Yes I am thankful I am here but I would like to be able to go and do all the things my 8 year old would like to do. I too can't walk far because of the muscle weakness. Maybe I should look for a new Dr. too. OH I can't I only have two choices. This one or the other practice.
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kitty dog, it is amazing to me that even the MO who will admit neuropathy occurs just don't get how much muscle weakness comes with it, they think we're only complaining of pain, "uh no, I'm complaining about how much I can't do anymore AND how much it hurts."
What the work we can't do doesn't matter, not unless you reach the level of a concert pianist? I don't get that reasoning at all
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I don't have chemo induced neuropathy but my DH has peripheal neuropathy and was not happy with his neurologist. When my BS sent me to the pain Dr. for my breast nerve damage I made an appt for DH. I have never been to a pain Dr befor but if they are all like this guy may some of you should give it a try. DH had taking neurotin then switched to Lyrica, both he had to be on high dosages and made him goofy, he could not think straight. So pain DR. changed him back to a low dosage of neurotin and put him on noratryptaline and also a compounded cream. My BS had put me on Amatryptaline and he added the compounded cream to me as well. It is amamzing how much better DH neuropathy is. Also found how that a low B12 can cause neuropathy to be worse so you might want to have that checked. DH was way low, he got it up with a precription B12 and he has to keep taking it for another 6 months. When I was at the MO office the other day I noticed a drug rep had left some of the same B12 samples at my MO office. So I guess to sum it up if your MO's are not taking care of your neuropathy you might want to try going to a neurrologist or a pain Dr. No sense in continuing having problems if the MO is not helping you out.
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Sherry C, very good advice. My Vit B12 was fine--so was everything else they tested to see if something else could be going on. Nothing to blame but the chemo. However, I agree, the chronic pain doc and my PCP have been much more help in getting me more funcitonal. They don't waste time trying to deny the neuropathy, false hope, platitudes, or hoping just maybe it will go away, they just started working on trying to make me functional. Nor, did they waste time trying to tell me it will get better other things could be going on. blah blah.... just, this sucks what can we do it help. Very refereshing and much more helpful
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I really don't know why some onco try to deny neuropathy. When trying to decide on chemo that was one of my reasons for not doing it. I already had some nerve damage from a car wreck 16 years ago and did not want to make it worse and the MO said that was a possibility. My onco score was in the middle of intermediate so because of the SE I decided against it. Just wish my RO had thought the same way. the rads did end up hitting on the already damage nerve and now I have two more fingers that have lost sensation. pain Dr says it was definitely the rads and that I was not a good candidate for rads because of my existing nerve damage. Luckily I have not lost strength and it is not causing any pain. If it stays like this I can live with it. Now I am going for a MRI so he can see what is going on with my nerves. Fun and money$$$$$
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Sherryc, I'm so sorry to hear that, how frustrating.
I'm venting again tonight. It is hot here, so, of course, the neuropathy is just BURNING, ugghhh In the winter the cold makes me so very cold, in the summe, it just burns.
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The protocol for me was first amytrypiline, then neurontin and when they didn't work
lyrica...the neurotin worked for a little while, but then stopped..I have been on Lyrica since it was approved and maybe it isn't working as well as it did..that has been five years I think. But before
I couldn't do anything and now I can walk, and even play 90 minutes of tennis., but no more.
I am interested in tht compounded cream, but wondering if they make it without the antiinflammatory as the chemo fried my liver so I can't take any NSAIDS..
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SoCalLisa, the cream I am using is compounded from amitryptilline (antidepressant, good for chronic pain), baclofen (antispasmodic, good for spasms in blood vessels), and ketamine (general anesthetic). No NSAIDS. If your doc is interested in it, the article I referenced above might be helpful. I saw a toxicologist who worked called the researchers for the exact instructions on preparation, then she worked with a compounding pharmacy to get it for me. It only lasts for 2 weeks before it becomes unstable and expires, and has to be refrigerated. I have been on for about 2 weeks now, might have some improvement as I am now typing my emails, but certainly cannot play piano (no, I am not a concert pianist, but that WAS one of my most enjoyable hobbies, as well as stringed instruments, which is no longer possible).
Yesterday was a particularly bad day, face and jaw aching and tired all day. It just felt sad face, unable to talk clearly because my tongue was tired and tingling, teeth tingling/vibrating, and face just exhausted.
I think not getting sleep makes it worse because I had not slept well for a few nights, then last night went to bed at 8 pm, took ambien, slept all night, feel a little better today. I have an appointment with a neurologist next week (finally!). But I am also getting very tired of all these appointments - I did much better while on vacation for 2 weeks, able to sleep every night, exercise appropriately every day, not worry about any appointments or work, and felt closer to normal than I have in a year.
For those of you whose health care team refuses to acknowledge neuropathy as an adverse effect of Taxotere, here is the prescribing information they SHOULD be reading BEFOREnusing it on anyone, and you can print it off and yellow highlight the neuroapthy section if you want to make a point!
http://products.sanofi.us/taxotere/taxotere.html
With the OK of my MO, I used L-glutamine 30 gm daily (10 gm, three times a day) and vitamin B6, but not in large doses as high doses can also be neurotoxic, and still got the neuropathy.
I have done a pretty exhaustive literature search on Medline, and the nursing literature has a LOT of stuff about CIPN and quality of life, but the medical literature (what the docs read) simply has lots of statistics about how wonderful these drugs are in killing cancer cells and how the SEs are "tolerable". I want to strangle the authors who announce that these SEs are TOLERABLE... tolerable to WHO!!!!!???
OK, indoor voice again. I was able to get all my planters filled with potting soil and am getting ready to go for my first solo road trip in a year. Hooray!
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I go for a MRI tomorrow of my cervical spine to see what damage the radiation has done to those nerves. They were the nerves that were originally damaged in a car wreck 16 years ago. Since radiation I have gotten more numbness in my fingers on my left hand. I have not lost any strength which is good and I have not had any pain, but more numbness and I also have tingling sensations when doing yoga that I never had before. My Dr wants to see what the nerves look like to see if I need to go back to the Neurosurgeon. I have really been annoyed at this as I was stable for 15 years with no problems until now. I can live with the change I have I am just hoping it is not anything more serious.
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Glad I found this thread! I had neuropathy the first time around in 2004, it left me with three "dead" toes. You never realize how much you need those little piggies to balance, until they are numb. But I adjusted.
This time around, I had to stop treatment at 5 of 6, due to neuropathy. I'm on the neurontin and nortriptoline - which helps a bit with the zings and pain, but makes me so sleepy. I just drove my son to camp - 12 hours round trip, and it has really stirred things up. I am 2 1/2 months out of treatment. I wonder if this is going to be another "new normal"
I have terrible foot pain, pins and needles in arms, balance problems, and lets not forget the freaky pains and sensations like bugs crawling and icewater dripping, on legs, stabbing leg pain, etc.
I also wonder what drugs I would be able to have, if this treatment didn't work (jury is still out - awaiting another tumor marker test). I don't think I would take a taxane or platinum drug.
I see the neurologist again the 28th, I'll ask him what he thinks, but in the mean time, wondering what any of you have been told in relation to taking drugs that are known to cause neuropathy.
They have identified a biomarker to detect who will be prone to CIPN. Hope it becomes available soon, so women can make better decisions.
Thanks for listening...
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Having a better day today. Finished my first solo road trip in a year to go visit family, and was very pleased. Also saw the toxicologist today, got more encouragement. Will see the neurologist next week. Am realizing the symptoms really worsen with fatigue and stress, seem to be much better when I am rested and doing things that I enjoy, such as hiking, dancing. Not sure how well I will handle the stress of the start of the academic year, new courses, lots of computer work, etc.
Sherry, how are you doing? Hope the MRI gives you some answers and that your symptoms are treatable and resolving soon.
OBXK, the taxanes, Taxol and Taxotere both cause CIPN, and I think some of the others can also, but not as often and not as severe. I also saw the news article about the biomarker that may predict CIPN, and I am going to research that a little more. I am teaching a course in pharmacogenomics this fall, and will be looking at a lot of drugs whose effects and SEs are linked to genetics, including some of the cancer drugs (among others). When I can focus on the scientific information without the emotional baggage that I have at times, this is a very interesting topic, and we just happen to be unlucky enough to have had chemo BEFORE they are able to predict who will get SEs and who will not, but I have hopes that other women may be spared some of these horrific problems when we learn more.
What can we do to help each other? I think venting here is safe, and sharing anything that might give us hope, little daily successes or joys, insights, and any other positive thoughts are also good. Some days I find easier to have a positive thought, and I truly enjoyed my visit with my mother (an 18-year survivor) and am thankful to have had that opportunity.
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Thanks Linda, I hope to get my results tomorrow, also the dr was going to take a look at the x-ray of my left hip that another one of my dr's had ordered. He wanted to actually look at the x-ray. My RO called me today and asked how I was doing I told him I was feeling pretty good but the nerve issues were really getting to me. Told him the other Dr had sent me for an MRI and all he really had to say was he hoped they found out what was going on with me. I said I hope so too because I really do not want to have to go back to the neurosurgeon. I've been down that road and it was not fun. Much worse than cancer. What does the toxicologist do for you. I have not really heard of anyone see on?
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n3ypb: where are you teaching, that sounds like a very interesting course. I would happily give some DNA to the person working on a marker to ID who will get big SE on taxanes. I think part of what makes me cringe is the thought of that 10% with a polymorphism that get SE's w/o benefit to opioids, what if we find out those with the worst SE's on taxanes get the least benefit? What do you tell people about the tamoxifen metabolism test with such conflicting reports on its clinical utility? Plus, if we look at the conflicting reports on clinical utility of the CYP2D6 do we really know how important it is for those on tamox to avoid drugs that interfere with tamox metabolism? Huge QOL issue for some. BTW: I notice fatigue really effects my coping also. Its hard to get people to understand that fatigue doesn't lead to discomfort, fatigue leads to shut down
Thinking of you waiting for results Sherryc
OBXK: thanks for listening is right, vent away!
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Well I just heard from my Dr. and I have a herniated disc at C5 & C6 in my neck. this is the same location that I broke my neck 16 years ago. C6 & C7 are fused together. The reason my arm has not hurt is because of the medications I am taking for my breast nerve damage. I am very active in yoga so I have not noticed any muscle weakness in the areas I would normally. So for now we are going to watch it. Dr. does not think it is bad enough for surgery but at some point I may have to. I guess good and bad news but will treat conservatively
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Sherry, I am glad you don't have to have surgery for now. I was hoping it was not radiation neuropathy, glad it is "just" herniated disk. I'm guessing you will want to be careful with some of those yoga poses! I did yoga for a couple of weeks while on vacation in June, and found it SO HELPFUL, and am starting weekly lessons again next week.
The toxicologist has specialty training in anything that poisons someone, and how those poisons affect different organ systems. I knew that they do deal with some chemicals that cause neuropathy, so called to see if I could meet with one just to explore any ideas she might have, and she has been very helpful, looking into topical drugs so that I would not have the SEs from the other drugs that are supposed to help "manage" the CIPN. Yesterday we decided to discontinue the topical cream for the weekend to see if I can tell a difference between using it and not using it. It has been hard to tell because I have been avoiding anything that stresses my fingers, and now I have to get ready for the new semester, so plan on stressing them big-time over the next week, so maybe can get an idea as to how much help the cream will be.
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Yes I will have to watch some of the yoga posses. I am relieved that I do not have to have surgery on my neck at this point and really hope that it resolves itself. The surgery I had 16 years ago was brutal and the rehab took months. It was a good year to year and a half before I was at a point that I was as good as I was going to be. Have always had nerve damage and that never went away but was livable. So now to deal with my breast nerve damage that is caused from radiation. At least they are all the same drugs so i am not having to add anything at this point.
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Saw the neurologist this week, and finally agreed to try one more drug. Anyone have any experience with duloxetine (Cymbalta)? She started me on the lowest dose they make to see if I can tolerate it, and after 3 doses seem to be doing OK as far as SEs, but nothing helping the symptoms yet. I think the topical cream really DID help with cold sensitivity and some of the tingling, but it is so messy and didn't do a thing for my mouth/teeth/face.
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Hey Linda - I am on low dose Cymbalta for about 3 months. I take 20 mg in AM and 20 Mg in PM. It takes some of the edge off of the tingling and buzzing in my fingers. I stopped for a few days and could notice the difference. It is not dramatic by any means. But helps a little. Seems like everyone has different results.... The Lyrica and Neurontin did not help me, but I see it has helped others with some symptoms. Good luck with it, I hope it gives you some relief!
Stay Strong,
Cindy0 -
Took Cymbalta for about 10 days after discontinuing topical cream. Added diarrhea, nausea, jitteriness, jaw clenching, and headaches to my SEs. Couldn't use regular headache meds due to interactions. Couldn't eat so continued to lose weight. Couldn't be too far from a restroom, so decided to discontinue so I could at least go on a beach vacation, which I am doing this week. SEs mostly gone within 3-4 days of discontinuing. Will ask to go back on topical cream when I get back from vacation as I think it did actually help the painful cold intolerance. Cindy, seems like nothing gives dramatic relief, but in retrospect I THINK the cream has helped the most and with the fewest SEs. It's just messy, takes time, and my hands get super-crinkled in water during regular shower or water aerobics class. I think I can learn to deal with that more easily than the generalized SEs.
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Well, I"m 9 months out from my last chemo and looks like the neuropathy in my legs and feet is here to stay. Thanks Taxotere. I've tried a number of 'remedies' and am now on Lyrica. Well, I have been high for over two weeks and its not fun. ("feeling high" was in the list of possible side effects- hmmm) Its just like being stoned and sleepy, so yes, I spent a good deal of time dozing on the sofa. Unsure of my driving abilities, and no interest in doing anything like shopping for food, cleaning, etc. I was hoping the side effects would go away over time, but no. Problem is, I take a small amount of hydrocodone for 6yr back pain and it intensifies the sensation. So I'm facing the choice every day of Feet/legs hurting OR back hurting. It also interacts with the 1/2 tab of Ativan I take at night to get me to sleep, so I wake up dazed and confused every day. Should I try another med for my feet? It feels like someone has hit the bottom of my feet with a sledgehammer and I have to walk with broken bones. My calves would burn constantly and take about 2 hours at night to get quiet so I could sleep. That's gone, but at too high a price. I'm trying to get well enough to get a job as my disability and gov't supplemented health insurance end this month. OMG, I am scared.
good to find this thread, and hugs to everyone who find themselves here~
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Ruth, you have come to the right place for support for the neuropathy. I think Lyrica is one of the anticonvulsants that has been found to be helpful in treating diabetic neuropathy, and MIGHT be helpful with chemotherapy-induced. I have had lots of trouble with just about every oral medication tried, including tramadol (pain med), Neurontin (gabapentin, another anti-seizure med), cymbalta (an SNRI antidepressant that has been found to be helpful for diabetic neuropathy, and MAYBE CIPN), have refused to try amitriptylline or others that already have known SEs of drowsiness, etc. Finally tried a topical medication that may have been helpful. Nothing has been GREAT, but the topical may have taken the edge off a bit. Every once in a while I get a little optimistic that this MIGHT get better - it has been about a year, and some people do continue to improve over 2 years or more, but most of the women here have had problems much longer. One thing that we need to address is the disability this drug has caused, and we weren't really warned about how severe it could be, except a little line buried in all the other information on the "informed consent" form we had to sign for treatment. That's what REALLY p***** me off!
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Great work by Chemobabe! Komen does have the ability to do the "right thing" and use the multitude of $ raised to better serve the current needs of those recently diagnosed, with better/safer/kinder treatments, and for those who have survived the hell of the worst of it. Come on Komen!! We all need to make our voices heard - or change will not happen.... http://www.chemobabe.com/2011/08/attention/
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Am on my beach vacation and took a vacation from ALL my meds and supplements except that little half of an ambien for sleep. Was hoping I would wake up better and back to normal. Didn't happen, but I have had an awesome time with family. So I feel a little guilty when I wake up feeling sorry for myself with hypersensitivity/tingling in feet, fingers, mouth/teeth - it is SO ANNOYING and WON'T GO AWAY and LEAVE ME IN PEACE. ARRGGHHH!!!
OK, thanks for listening, I can get on with my day now....
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Give the venting to us Linda!! We certainly understand - and relate!! We know how hard it is to feel those sensations and pain 24/7. It never stops..... sucks. So whenever you need to shout about it come here and blow off that steam it builds up!
Enjoy your family - soak up the beautiful beach... breathe the freshness of the salt air.... taste the salt on your lips.... if youre at the jersey shore, do a dolphin boat run.... they are wonderful creatures.... in my mind, i'm almost there too!
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