Vent about Permanent Neuropathy
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GmaF, that seems like a reasonable time to taper. I would still call the doc about your symptoms.
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ChickaD - I had an EMG/NC study today and while the neurologist was doing it, I happened to ask him about my muscle twitches. I only have occasional muscle twitches that are self limited and occur in different areas (in Nov they happened almost nightly in my right neck but otherwise haven't happened every day and have moved around my body). They started shortly after I began chemo and I still get them - last night was in my left neck. He said it wasn't anything to worry about and was most likely due to an electrolyte imbalance. I'm not sure what to make of that since my blood work hasn't shown any sign of an electrolyte problem. Anyone else have them?
Anyone care to share their EMG/NC results (and symptoms/reflex exams/prognosis) - According to my neurologist, my EMG/NC combined with my physical exam and history show that I have a small fiber neuropathy. Has anyone else been diagnosed with this? He says that this (combined with an article he read about taxotere neuropathy) suggests that I have a good chance of recovery. I am very skeptical of this since he said the article suggests that the neuropathy from Taxotere should improve or go away within a few months of discontinuing the chemo - where have I heard that before? I am almost 6 months PFC and my neuropathy has progressed, not improved! I want to believe that it will go away but my progressive pain makes it hard to believe!
I would be interested in hearing what others EMG/NC results, symptoms, exam findings, and diagnoses are! Anyone else have a Small Fiber Neuropathy?
My results:
PFC = almost 6 months
Symptoms = I have pain involving every inch of my body from head to toe - most severe in my feet, left hand, and mouth; it started after my first chemo and has progressed, even getting worse after I was done with chemo (still on Herceptin). Wearing shoes feels like putting my feet in a vise! Driving/typing hurts my hands. Part of my mouth burns as does the skin of most of my body. I have some numbness in my hands that only gets bad when it is cold.
EMG/NC = normal
Physical Exam = Loss of ankle reflexes
Diagnosis = Small Fiber Neuropathy (Definition = a predominantly painful neuropathy involving only the ends of the nerves)
Prognosis (according to neurologist) = I should get better (actually I should have already started to get better according to my prognosis so I question the accuracy of it)
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I had SFN before bc from diabetes. There is no cure for either. The Taxotere almost killed me. I had a severe allergic reaction to it. Think hand foot syndrome ALL over your body. It took about a month for all symptoms to resolve, longer for all my nails to fall off and regrow. I'm now over a year PFC, the neuropathy is just a tiny bit worse.
Neurontin and Lyrica are in the same class of meds, some get relief with them, I can't take them, and didn't help with the tingles.
Mostly my feet. I wear Birkenstocks year round. I use BioFreeze with good results, I have lidocaine patches for when it's really annoying.
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Spookiesmom - Wow! Sorry to hear about your reaction to the Taxotere. That sounds terrible. When you say it was like hand/feet syndrome all over, does that mean red and painful? I'm so glad that resolved for you - it must have been tough! I assume they stopped the Taxotere when that reaction occurred! When you say the neuropathy is a bit worse, is that compared to the neuropathy you had before chemo? I'm still trying to learn about SFN. How do they know who it will get better for and who it won't?
Right now I am looking for hope! And trying to understand if there is a commonality or way to tell who will get better and who won't.
Anyone else know their EMG/NC results and willing to share them as well as their symptoms, exam findings, diagnosis, and the prognosis they were told? Anyone else told they have SFN and it should get better?
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Stacie: Sorry for your pain. I have neuropathy in my toes/feet/lower legs/hands/fingers. I do not have diabetes and never had any problems before chemo. I finished the 6 taxotere series on 8/7 and the neuropathy has gradually been getting worse. That said, I haven't done EMG/NC but met w/a neurologist & will be going for a gait & balance assessment Thursday.
I think ALL of us are told "it will get better". At least I feel my neurologist was the first doc to "level" w/me. She said the symptoms get better for 70% of people but by "better", I shouldn't expect to ever get back to where I was. Also unless you have a pre-existing condition like diabetes before chemo, I don't think there's any way to predict who will get neuropathy. But that's just an opinion & I haven't thoroughly researched.
Did you have just two taxotere/carbo infusions? Are you still on Perjeta? One of the "experts" from MD Anderson told me that Perjeta doesn't cause or aggravate neuropathy even though it's a listed side effect. It's such a new therapy I'm hesitant to discount that possibility.
Hopefully someone else will weigh in with more info either here or on the Taxo thread.
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Minus Two - Thanks for the response! I'm sorry you have neuropathy too! I did 2 Taxotere/Carbo then 4 Taxotere/Cytoxan all while doing weekly Herceptin. I did 4 Perjeta with my Herceptin starting in September due to the reports that were coming out about survival benefits. However, I stopped the Perjeta after only 4 doses because my neuropathy was continuing to worsen and I didn't feel there was enough knowledge about Perjeta since it's so new. I really wanted to do the Perjeta until I was done with Herceptin but the worsening of my neuropathy had me too scared. I'm really not sure about the Perjeta's contribution though. I believe my neuropathy is more severe than most because I think I was given too much (the liver clears the Taxotere from the body and my ALT went up into the 300s during my chemo - was 18 before starting) but I have no idea why it keeps progressing. Did you restart your Perjeta after you were done with your 4 AC?
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Stacie, so sorry to hear you are having worsening of symptoms right now. This is called "coasting" and it occurs because the nerve damage happens, then there is a "dying-back" process where the symptoms continue to get worse over several weeks to months, and that is followed by nerve regeneration or healing, which can take years. The small nerve fibers are the ones that carry pain sensations.
I truly believe there WILL be a way in the future to figure out who will get the neuropathy, but it will probably be from some type of genetic testing. I think in my own case the MO should have discontinued the taxotere after the very first dose as I had symptoms, but she blew them off, told me it would get better (and indeed, it did get better before the next dose, and then I had a horrible time, which again got a little better but never completely resolved, so she reduced the dose, and finally discontinued after #3). I think the docs should pay more attention to early symptoms in order to avoid permanent damage, but we have to be the ones who "holler loud and clear" and so often we are afraid of being a bad patient, a complainer, or whatever and we don't stand up for ourselves early enough.
The other thing that I keep encourage everyone to do is to DEMAND that the MO file a report with the FDA regarding adverse drug reaction, especially if you continue to have symptoms more than 6 months after chemo. That is the only way the FDA can track this and then send out sterner warnings to the docs about this SE. That is what happened with the the fluoroquinolones (Cipro, etc.) a year or so ago - enough people reported neuropathy after taking that drug that the FDA has now put a big warning on the prescribing information.
It has been 3 years for me, and I do notice a very slight improvement as long as I do not stress my fingers. Typing these long posts aggravates my fingers, lots of tingling pain, but I can't stop myself, LOL!
I hope this helps a little. Wish I had lots more answers, but I have done a ton of research on this, and actually was part of a professional presentation last year to a group of toxicologists on CIPN. Many of them are PhDs and MDs and are studying the similarities and differences between the various peripheral neuropathies, comparing diabetic to taxol to taxotere to cisplatin to antibiotics to etc etc etc. Bottom line is they are finding differences in mechanisms of injury, nothing that will work for everyone for symptom relief, and there are just tons more questions. So I know there is a group of dedicated scientists who are interested and working on this, but funding is tough, and not enough people are making enough noise to help get this research bumped up in priorities. Maybe a good economic study on how much this costs everyone would be a place to start - it's always about the money!
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Kirkland gal - I think I'm one of the luckier ones here. I am 18 months PFC and there are things I can do today that I couldn't do 6 months PFC. I think I've improved into this second year, also. My neuropathy came on right after first Taxol. I was given an extra boost of Carboplatin and could not complete that series due to the neuropathy in my hands and feet, plus incontinence, lower back issues and a collapsing left ankle. Taxol seemed to deliver the brunt of it. It only remains in my feet and the burning is a function of how long my feet are in a contact with a hard surface - standing or walking. At it's worst, it kept me up at night. Now I can walk for a couple of hours and only have slight discomfort. As opposed to the period up to 12 months PFC, it was constantly on my radar. There is hope for some of us.
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Linda and Kam - Thank you for the responses! It is helpful to hear that there is hope for improvement!
Linda - Do you know how long the coasting can last? You say weeks to months and I am almost 6 months out - do you think months can mean longer than that? I should have done what you did and stopped my chemo because of my symptoms - I only kept going because of the MOs reassurances. I kept hearing - "Taxotere related neuropathy usually goes away after treatment." I have been kicking myself for not listening to my body instead of my MO! The neuropathy in my face started after my 4th infusion (when my ALT was 310) and I went ahead and did 2 more infusions after that - what was I thinking!!
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You can do a search on Wiki about hand foot syndrome. It has a few pics. I was red, swollen and in extreme pain, from the soles of my feet to the top of my bald head. I had to get my rings cut off. DH took me into MOs office in a wheelchair I couldn't walk more than a few steps. Yes, MO stopped it. I was supposed to have 4 tx. I lost finger and toe nails. Peeled my skin from top to bottom, even where the sun doesn't shine.
As I said, I lost a few nerves to D. The chemo affected the same nerves, and one or 2 more. The top of my feet were more affected, but not painful. More like a dentist and Novocain. You can feel, but you can't.
I've had several EMG/NC done. Not a fun test, but doable. I have permanent nerve damage from a botched laminectomey. My hands recovered from the Taxotere.
Geez didn't mean to write a book!
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Kirkland: I'm scheduled to start the Herceptin again the end of January. At this time the MO says why don't we save the Perjeta for down the road, and I sure don't want to do anything to make it worse in spite of everything I've read about the benefits. I don't like to think about more 'down the damn road', but that's apparently what BC is all about. I'm making a list of quality of life questions vs. his 'down the road' to discuss before I start Herceptin again & radiation.
Thanks Linda. You always have such good info.
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Spookiesmom I had that kind of reaction to. It started on AC but when I did the first Taxol my feet hurt so bad it made me cry to stand up on them. The pain only lasted a few days but the rash remained. I too lost all nails, calluses, skinned peeled even in my private area. It was awful. Did you have an blisters with yours. I am not sure if that was part of my reaction to Taxol but I didn't finish Taxol. The third one put me in the hospital for four days. Looking back I know the hot baths I took several times a day was a no no for this...but it eased the pain. All I was given for it was a expensive lotion that did nothing. Some of this makes me mad because I was told it was not from the chemo at the time. grrr.
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I don't remember blisters, could have. I was so sick and miserable. They wrote a 5 day steroid, had me come in 2 days for IV fluid. Probably should have been in hospital. Couldn't shower, the water hurt too much. Was supposed to have 4 tx, just had the one. Which scares me, you know? Had the 4 AC.
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I finished my chemo last February 2013 so a year ago next month - got all clear from surgeon last April and in October from oncologist - still suffering from Neuropathy in my feet - one of the complications I could get from being a diabetic however it wasn't the diabetes that caused it it was the Taxotere........... go for a regular check-up at diabetic clinic one of the checks is the feeling in my feet fine before my chemo, had lost 3 parts of feeling in them after my chemo now up to 5 parts lost and my feet are sore a lot of the time but by the end of the day they bright red and burning sensations..... lose so much sleep because I cannot get them comfortable - didn't think I would still be suffering a year after the chemo finished!
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Toots, have you tried the multitude of meds for relief? Most of the meds have not been shown to be consistently effective for CIPN, but many of them are helpful for diabetic neuropathy, and with the potential combination you have going (the diabetes MAY have set you up for neuropathy to begin with, and the chemo may have just finished the job!), some of the meds that are proven effective for diabetic neuropathy MIGHT be helpful for you. Worth talking to a neurologist about options. And most people do seem to take much longer for improvement than the docs tell us - I was told things would get better within a few months, and when that didn't happen, the story changed to "most people are fine by 2 years" and when THAT didn't happen, was told it was probably permanent, but I may still get some slow improvement. And that has been true - I am still not normal, but have found a compounded topical cream that takes away the burning pain that kept me awake at night. In any case, I'm not sure what you have already tried, but be persistent and NOISY so you get the attention you need! And make sure your MO files an adverse drug report with the FDA!!!
Best wishes, hoping you DO get improvement over the next year.
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when I was doing my chemo I had some neuropathy of my legs. My onco nurse suggested vitamin B6.. Also super complex B. But primarily B6. Like magic it worked
I completed chemo in July & after a while I stopped taking B6 & of course my leg is starting up.. I'm back on the B6 & it's improving
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Is Vitamin B6 supposed to help with nerve healing, or does the supplement just downgrade symptoms while you are on it?
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Elimar - my MO said to take B-6 (200mg) & B-12 (1000mg) through the entire chemo process to help prevent neuropathy. Unfortunately that didn't work for me. (or maybe it did and it would have been worse??) My new neurologist told me to cut the B-6 back to 100 mg per day since some is good but too much can cause the opposite - neurological problems.
I've been taking both since last April when I started chemo so I can't tell if it downgrades symptoms, but I'm going to keep taking them in hopes that they help w/healing.
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Thanks, MTwo. I used L-Glutamine during the first 5 days for three rounds of chemo, the trouble was I had a hard time getting 30 grams. a day down, even in a juice. I also took one tab. of B6 daily on most of the days. Who knows, maybe it did help me because my pain is not horrible but I cannot stand the numbness. About the only thing I have not gotten around to trying is ALA (which, as many supplements supposedly do, helped diabetics) and electro-acupuncture. Guess I will guinea pig myself on those things next.
Not that it is a competition, or anything, but I read about some of you having terrible pain. I wonder if my nerves are less damaged, because I experience mostly numbness, or if that means my nerves are even farther gone than those of you that still feel something????? I did have some pain earlier (coldness/crushed feeling) but I don't have much of that anymore. Don't know if it is better or worse. If pain comes back, won't know if that will be a sign of nerves coming back to life, or things getting worse.
I haven't gone to a neurologist but, from what you all are writing, although they seem to narrow down the kind of damage you have, no one seems able to really turn it around. I do appreciate reading what everyone has shared here. It still seems like time is the big healer and I hope, as this thread goes along, to hear some success stories. It is encouraging to read that some continue to get better even after the 2-year mark also.
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My guess is that if you are early stage and only go through treatment once you might recover, at least one would hope recover something. That would suck to have from now on.
At Stge 4 and chemo forever it seems like yet one more thing to be robbed of forever though. I think the numbness is the permanent part but don't quote me. My feet are numb but I've have managed to get the burning and lightening strikes gone using the pain cream.
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Hi all, I am a long term Survivor(Praise GOD) 20 yrs this yr, I was diagnosed with fibromyalgia, for I ached all over and still have some discomfort BUT it is nothing compared to feeling NOTHING cause we didn,t make it, So I take advil or whatever and thank GOD I,m Still Here. msphil ai was diagnosed while preparing for my wedding and I was told I have breast cancer, then A called again saying it was a mistake and then another call " I did indeed have it, I had chemo before surgery(Lmas) then chemo after, reconstruction during surger, that after 1 injection into expander it hardned and I was rushed to E R and had it removed, so Ive been through alot, But the neuropathy or fibromyalgia is a small pass for SURVIVAL.God Bless. (idc,stage2, 0/3 nodes,L mast, chemo and rads and 5 yrs on tamoxifen)
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Chickadee, In the Stage IV domain, you are so right about the CIPN just adding to suckiness of the the whole "chemo forever" lifestyle. In the Early Stage domain, the suckiness comes when we get the CIPN and can never be sure if we even needed the chemo in the first place. It's like an ugly bonus that we may have gotten for nothing.
But I do getcha, msphil, and I am grateful cancer hasn't done me in (yet, anyway.)
Still, the collateral damage can be pretty awful, IMO.
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msphil - I do understand what you're saying, but I think some of our willingness to deal w/SEs depends on our personal situation. Age? marital status? children grown? grandchildren around? Lots of pain?
Hitting all the high points (or low points if you believe in the glass 1/2 empty), at this point in my life I'm more interested in quality of life than just survival. I watched my Mother "just survive" for 12 years as mostly a vegetable and it was a nightmare for everyone. She would have been horrified if she'd known.
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Linda-n3
Thanks for the comments, I went too see the doctor who gave me some pills which he thought would help, designed to help with diabetic neuropathy, I stopped taking them after the first week, I couldn't stay awake, every time I sat down I was sleeping and when I did had the most awful nightmares! Awoke with a mouth that was so dry I everything felt like it was stuck together! He has suggested I try acupunture just waiting for my first appointment...........taking vitamin B6 as suggested by my oncology nurse and it is improving a little. Fingers crossed the acupuncture has some effect - quite refreshing when your doctor suggests an alternative medicine may be better than the drugs!!!
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I had my appointment with a physiatrist yesterday. I don't know what I'm expecting at this point--I have what seems to be garden-variety chemo-induced neuropathy, and I'm lucky enough that there's no pain or burning associated with it. Just numbness, very unpleasant sensation when I walk, and poor balance. All of the medications for neuropathy focus on pain, not numbness (and I've tried a few, just to see--no improvement, and hair-raising SEs of their own).The dr. was perfunctory--I volunteered information, but she didn't seem particularly interested, whatever I said seemed pretty routine. She gave me a script for PT to help with walking and safety. I had to press her to give me names of therapists who specialized in post-cancer care.
I think the hardest thing is that anybody with this SE experiences such profound losses, and doctors are so matter-of-fact, or outright dismissive, about it. I share my frustrations with my husband, but with anyone else it feels like middle-aged whining about my health, and who wants to listen to that? Thank goodness for you all. And apologies if I'm whining.
In any case, I'll go to PT and report back.
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septembersong, Mine is the same story as yours. Thank goodness no lightning flashes of pain, but I can't stand the thought of having these numb feet for the rest of my life. I am reconciled with having my scars as a forever reminder of my cancer, but please not these numb feet too! Will watch for your updates. Good Luck.
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Septembersong, I SO get what you are saying! In fact, I actually bore MYSELF with my constant "whining" about this stupid neuropathy, but it is just something you cannot escape from. It is there 24/7. People who have never had that type of constant pain or discomfort that is unrelenting for months or more on end just do not understand. Everyone has had periods of pain or etc., but then it goes away. Not so for many of us. I am glad you pressed to get the PT who has some experience with caring for patients with cancer and the aftermaths of cancer treatment. It really sucks that you have to learn so many new skills just to live each day, to walk without falling and breaking something. BTW, I did PT early on for this, and one of the biggest helps was getting in the pool and doing the exercises. Not all PTs do aqua therapy, but it helped a lot that mine did.
Toots, good luck with the acupuncture. I tried that, and got some really great relaxation from it, but ultimately did not make the neuropathy miraculously better. But that along with mindfulness-based stress reduction and mindfulness-based pain control practices, I am managing. I don't know which med your doc tried, but there are many out there, so you MAY want to try others as some people DO get some relief with some of the meds. The tricyclic antidepressants have been considered one of the "drugs of choice" for neuropathic pain, but have lots of the SEs you mentioned you were having. Other classes of antidepressants that have been used include SSRIs, SNRIs, and several types of anti-seizure meds (gabapentin, pregabalin). All have different SE profiles that may or may not be tolerable for any single individual. I personally have tried at least one or two drugs from each of these classes, and found SEs worse than the pain and numbness. The topical cream I have does NOTHING for the numbness.
Elamir, you ask some good questions about whether the numbness or pain is more indicative of more severe damage. I don't know the answer to that, but I DO know that it seems to be sort of random in each individual as to which nerves take the hit. In my case, it was my hands. In some folks, it is feet, and in some it is the proprioception nerves (those that help you know where your body is in space, how you balance, etc.) rather than the touch (pain and light touch sensations), and in some, it can actually damage the motor nerves as well, but this is less common. I am encouraged that there is some research going on in this area, but feel a bit impatient, wish there were more answers, and better yet - something that can help prevent it and/or treat it!!!!
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Linda-n3, Yes, it is so freakish that some get feet involvement only (like me) or hands only, and woe to the poor ladies that get both hands and feet. I am actually a little paranoid that one day my hands could decide to join in the CIPN fun. I did have some tingles in them during chemo.
I don't like to be whiney only having numbness, and I am grateful that mine is not very painful, but yet I get discouraged because whereas something like the creme seems to help a bit with the pain, I have not read anything on here about what can take away the numbness. Not giving up hope, tho.
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I tend to think the damn numbness is the final damage. And insult.
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There is discussion on another thread that melatonin can help with CIPN. Also that it's effective in preventing BC. One lady takes 6 mg before bed every night. Another takes 20 mg per day.
I hesitate to even ask since most of you have already tried everything, but ... Anyone have any experience w/melatonin & neuropathy?
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