Vent about Permanent Neuropathy
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Janiegirl, I am sure you have probably already tried lots of things over the years. Have you seen a palliative care specialist? Not sure they can offer you anything more, but they are good at looking at ALL your problems and trying to come up with a plan to address them. This is NOT hospice! And I am sure you have had physical therapy, but it never hurts to ask for additional therapy if it helps at all, especially with balance and getting some strengthening.
What type of physical work are you doing? Are there modifications that the employer can provide? I asked for a voice-recognition dictation software for my computer, which my boss provided. It helped some, but made lots of errors that really slowed me down with having to correct everything. Despite the help, I find I cannot really do my job all that well and find myself considering long term leave of absence or disability.... very discouraging really.
I read my previous post and remind myself that this seems to be a constantly changing issue - this week am having more problems than I was when i posted last month. I get hopeful, then things get worse again. *sigh*
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Hi Janiegirl. It might be worth a shot to ask your doctor to check for Paraneoplastic Syndrome. It's just a blood test, in which they will test for an antibody called CV2. As soon as you said your legs felt like dead logs, that's the first thing that came to mind. If it is, it's so important to catch it early. The good news is there is treatment for it. I went from being in a wheel-chair to walking again (walking funny and unbalanced, but walking). If it turns out this is what it is and you need more information, please feel free to pm me because I've been through the ringer with this.
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I should also tell you, your onc might be adverse to giving you the test. Mine was....kept insisting it was plain old neuropathy and that the chance it could happen with bc was .001%. I didn't get the test until my family doctor went to bat for me. Now that my onc knows this, he's regularly checking his patients that have that dead limb sensation and that it's not as uncommon as he initially thought. I'd insist on it, however you can get it.
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Hello, everyone,
I've struggled with neuropathy in my feet since shortly after I began treatment. That was four years ago. It's intensified since then.
I tried acupuncture, administered at the center where I was treated (Dana-Farber). That was lovely, but did nothing for my neuropathy. I recently saw a rheumatologist (I have arthritis in my knees) who prescribed Cymbalta, which has been known to relieve neuropathic pain. That did nothing for my numbness.
When I saw my oncologist's NP in June, I asked her if anything could be done for this. It's a real quality-of-life issue--as you know--as exercise is much more difficult if you can't walk for any length of time. She referred me to a neuro-oncologist at Dana-Farber.
The neuro-oncologist was very straightforward and told me that there are medications that treat neuropathic pain (which I am happy and grateful to say I don't have), but there is nothing available to treat the permanent numbness that occasionally results from treatment with taxanes.
So I'm resigning myself to making the necessary adaptations and moving forward. I occasionally take Vicodin if my feet are really throbbing at the end of a long day.
Has anyone found a remedy for this? Or a post-treatment solution that makes it easier to deal with?
Good luck and good health to all of us!
Ann
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Ann, I don't have the numbness, but have the pain, and have tried just about every medication there is for it, all with disastrous SEs of their own. I asked my MO to file a report with the FDA, and she is in the process of doing so. You should request that your MO do the same - the drug manufacturers can only track the post-marketing adverse reactions if they are reported to them. I would encourage ANYONE who has permanent neuropathy, whether it is pain or numbness - anything that has led to decreased quality of life or inability to perform your jog - to DEMAND a report be filed with the FDA adverse drug reactions. It has taken a year of reminding, but my MO is doing it.
I met with her on Monday and we discussed this all over again. I have seen a neurologist, toxicologist, OT, PT, done acupuncture - not helpful except the compounded cream from the toxicologist that has relieved the extreme cold sensitivity/severe pain in my fingers so that I can at least pull things out of the refrigerator without wearing winter gloves. I am ever so slightly hopeful that things will improve over time, although the MO said that if there hasn't been improvement by 18 months (which is where I am) that it is unlikely to improve. The only reason I am hopeful is that I initially had severe tingling in my teeth so that eating was a major problem - couldn't chew without pain - had to put everything in food processor - but that has improved so that I rarely have that sensation and am able to eat crunchy things again, enjoy my food again, and have put some weight back on.
I have been VERY angry with my MO since I reported problems after the first taxotere infusion, but she ignored them, went ahead and kept me on it for another 2 cycles, finally discontinued it, but by then the damage was done. I met with her on Monday, and using a script so that I would not get off track or get emotional, told her how very angry I was with her, then I asked her what she would give me if she had paid attention to my specifically stated fears at the beginning of treatment, and she said she would have recommended a different regimen, one that is older, not used much, less effective, but MUCH less toxic. It was in this acknowledgement of her mistake with me, and my own acknowledgment that I had agreed to the treatment without listening to my own heart and mind - that allowed me the moment of forgiveness, both to her and to myself. Neither of us can change the past, but we can start from this moment on to work together. I think she learned a lot from me. I learned a lot from me, too. I know I DO have the capacity for loving and for forgiving. She is a wonderful woman, she cares very much, and just maybe, next patient she sees with values like mine, she will avoid harming them.
I have also had SEVERE fatigue, in bed or recliner about 16-18 hours a day, minimal energy to get anything done other than basic hygiene and meals. She had suggested a trial of Ritalin (yes!), but I was very resistant to it, knowing that every other medication she had prescribed for me had produced intolerable SEs. So I saw my PCP, who is also a palliative care specialist, who suggested this drug for the second time (she has suggested it last time I saw her a couple months ago), and I finally agreed to trying it at the lowest possible dose. It is like a miracle drug! And it seems to have helped the severe heavy, burning pain in my arms that seemed to cause a lot of weakness. I was able to actually start AND FINISH a project (cleaning out my bathroom closet!), and after taking my morning dose at 7 am, have been able to function before 10 am, with energy and a more positive, hopeful outlook.
So the finger pain continues, these notes take forever to type, but I am not going back to bed after I finish, but am going to tackle another house project!
Janiegirl, I was wondering if some of your difficulties may also be fatigue-related.
And for everyone here, I strongly encourage you to see a palliative care specialist if you have not done so already. My MO wants me to go to the Pain & Symptom Management clinic, but I know that they push a lot of drugs, whereas the palliative care folks are looking at the whole person to improve your overall quality of life, and are aware of how many of the drugs can cause other SEs that might not be tolerable, and they look at your life goals, not just whether you are free of pain or symptoms.
Sending lovingkindness to all of you.
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Linda,
What you've been through! This can be a complicated disease and the treatments are complicated as well.
I also felt angry with my MO, who dismissed my symptoms when I reported them. In fairness, most patients don't develop permanent neuropathy from treatment with taxanes, and I think many oncologists assume (wrongly, in my view, as one who suffers from permanent neuropathy) or hope that these symptoms will disappear with time.
I'm impressed that you've worked through this tough issue with your doctor and have chosen to stay with her. I'm staying with mine for now, because it's complicated to change oncologists within Dana-Farber; I see her once a year; and if I continue to do well I know I can rely on her for good information and advice in general. If I should recur (God forbid), I'll seek out another doctor.
Your suggestion about filing a report with the FDA is excellent. I'll look into it.
Take very good care.
Ann
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Ann, does your MO know how angry you are about this? Do you tell her what your day is like? I found that telling mine, gently, in detail, what it is like to get up every morning, struggling to do basic hygiene, struggling to get email done, lectures done, not able to play piano (one of my previous passions), not able to do fine needle work (I also have counted cross stitch projects and a couple quilting projects started that I won't be able to finish), etc etc etc - I went hour-by-hour, she listened to me. I agree with you that most patients DON'T get permanent neuropathy, but the MOs need to listen to us - we know our bodies and how they are responding better than they do - they can look at lab numbers, scans, etc., but they cannot know how we are feeling and doing unless we educate them. I have been in tears almost every visit with the MO, but this time, I was calm, rational, and that really helped her to see my points.
I am interested in discovering why some people DO get permanent neuropathy, others transient, others none at all. I have a colleague who has been working on the mechanism of toxicity of the taxanes in a cell culture line. I have read about some genetics research (one of the universities in Indiana, I think) to see if specific genotypes/phenotypes are more susceptible. I think we are on the verge of finding some answers, but unfortunately, we were the guinea pigs. Someone has to be, I guess. All we can do is to help educate, prevent - and we MUST let our doctors know, and we MUST INSIST that they file reports with the FDA. The more numbers documented, the more likely it is there will be some action, or at least more investigation.
I know I have said it either here or on another thread, but I would STRONGLY ENCOURAGE anyone with chemotherapy induced neuropathy to INSIST that your MO file an "Adverse Reaction" form with the FDA.
I continue to do well with new meds, much more energy, much less heavy arm pain. Fingers still problematic with all this typing - I know it is a trade-off: fingers will hurt for a while after this, but my heart, mind, & soul need to communicate with others.
Peace.0 -
Here's something we can do to help get some attention..... LIVESTRONG cancer survey. Also, check out OVAC - One Voice Against Cancer. http://www.ovaconline.org/ They take the information we share via surveys and such, and use it to present to Congress for government funding of Cancer Research and Patient Aide. They are an advocate for us all in the US. Here is the link to the survey http://www.livestrong.org/cancersurvey. Stay Strong, Cindy.
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Linda,
That's wonderful that you're getting some relief from the medication. I think this is a long and adaptive process, and we just push ahead with what works. Happy that you've found something that's working for you.
My limitations have to do with my feet and my knees, and the neuropathy issue is complicated by the fact that I have arthritis--I had knee replacement surgery two years after I was treated for bc. I'm 61, and it's my experience that as we get older it's rarely just one thing--other factors come into play. I might be able to deal pretty well with the neuropathy if my knees didn't make walking such a chore. And I really can't say if it's the neuropathy or the knees that makes my balance so wonky sometimes. You get the drift.
But I totally agree with you and Cincerely that we should work to share our experiences with these drugs and treatments with groups and agencies that can take the information and use it to improve patient care. Oncologists focus on saving your life. It's our task to deal with the residual side effects from their work that changes the quality of the life they've saved. I think the whole survivorship movement is directed to these difficult issues.
Thanks to both of you for raising these questions and suggesting practical responses.
And take good care of yourselves!
Ann
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It sure always helps to share experiences. I kept the note from the first visit I had with the practitioner after my first round of Taxotere. In it she basically ridicules me for thinking Taxotere was causing neuropathy and nail problems after only one dose and also goes on about how she had to instruct me in finding different shoes because it was obviously a shoe issue and not neuropathy. One of the exact quotes from that visit was "neuropathy is impossible at the dose you've had." Well, here I am over 3 years later and every day is a struggle. I've changed my career and given up many activities that I used to love. At least she's gone and I no longer have to deal with her when I go in to see my MO. Not only did she not listen, but she made fun of me. What a dolt.
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Have been dealing with increased tingling in fingers whenever typing or using them the past week or so. Is this a good thing or not? Could it be signs of angry nerves healing? Or signs it is getting worse? Or the topical cream is not working as well? *sigh* Lots of questions, no answers. *sigh*
But overall, I guess I am "adapting" - grrr.
Have started voice lessons since I cannot play piano anymore, and enjoying it tremendously!
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Linda, I'm so happy the voice lessons are so enjoyful. I love to sing. I just will only do it when no one is listening since I'm hard on the ears
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Staring at the papers just piling up, completely unorganized as I just cannot bear to touch them, shuffle through them - my fingers just scream when I do - so more depression about not being able to find important papers, get to my desk, etc. Am considering calling a temp agency to get someone in a few hours a week just to do filing for me. It's just tough to allow someone else to access my private papers - and in actuality, only about less than 10% of the papers are all that personal.... but that idea just popped into my head tonight, and I wondered if anyone else has hired help because of the neuropathy problems. I hate having to either be dependent on someone else, or being miserable with pain - choices.
And on the matter of choices: I have to remind myself to "choose happiness" - or at least "choose lovingkindness and forgiveness."0 -
Linda, I have a housekeeper every other week. I am SO glad I finally did that. A temp to help with your papers sounds great to me. Go for it!
Hugs Ginger
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I had my last Taxol in early June, then Carboplatin once a week until August 1. My neuropathy started around the second dose dense Taxol in early May. My neuropathy persists...not pain, but numbness, mostly in my feet, but also in my thumbs and two other fingers. I saw some initial improvement after stopping Taxol, but then it regressed the 2nd week of Carboplatin - though to it's worst state. I have not seen improvment since. It is not painful, but I can only walk for about an hour before it becomes too unbearable. I take glutamine, alpha-lipoic, Carnitine, and a B vitamin. They do seem to help. Gabapentin just made my feet more numb, which is exactly the opposite of what I want.
Is there still hope for recovery this far out from treatment and given I have seen NO improvement since 2 weeks post Taxol (back in June)????? My MO says for up to a year, but wouldn't I see some continual improvment if that were the case???
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I am about 18 months since finishing chemo, and have neuropathy in finger tips and toes. It's my fingers that hurt the most, aggravated by bad arthritis. I take gabapentin, but don't know to what extent it helps. To be sure to get to sleep without pain, I take two Tylenol 3 every night. In about an hour, I get drowsy, while I read in bed (and visit this great website on my tablet), and fall asleep. At almost 67, I have decided that a good night's sleep is more important than worrying about the codeine in the Tylenol. So that's my solution....
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Kam170 how long did you take the gabapentin Neurontin? I took it for a long time after back surgery problems where my sciatic nerve was firing randomly through out the day, it was very painful and would cause me to wet myself. Neurontin made it stop, finally. I just wonder if it will really help my feet two years after chemo, they are so numb I have my slippers fall off and I dont know it. I have read so many peoiple saying it made them drowsy and I am already so blah that I hate to risk it. I am starting to think this might get worse on my feet. I have the electric shocks in them, that is the pain people are describing and it can really take your breathe away.
Evergreen3 I understand your wanting to get a good nights sleep but perhaps your doc can suggest other drugs. Two tylenol number 3 is what my Neurosurgeon told me to take when my back completely went and I needed to get to the hospital for surgery. It it a big dose and a lot of tylenol isn't it? I am the same age as you. I am wondering if you take it because you are in bad pain or because you want to get to sleep? I take two one mg lorazepam to get to sleep if I am having trouble and I drift right off. I am sorry you are having hand problems too.
My neuropathy has not improved in two years. The electric shock element has also remained pretty stable. I may be about to try the neurontin.
Hugs Ginger
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I am almost 2 years out of chemo. About 6 months ago, I started getting sharp stabbing pains in one part of my foot and wrist/hand. I was diagnosed a couple of weeks ago with neuropathy. I start physical therapy on Monday. Also occupational. I am having trouble with walking, especially stairs. I am only 52. Hoping therapy helps. No drugs for me right now. I have too many I am taking now, and they are worried about more side effects. I also have sarcoidosis, and they don't know if it is a combination of chemo/sarcoid.
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Jackie - is your neuropathy related to chemo or something else?? Mine definitely started during chemo, and specifically due to Taxol.
Gingerbrew - I only took Gabopentin for 2 days....I hated the feeling I was getting. I don't have the type of neuropathy that causes pain, though, just burning and/or numbness. I want to feel more, not less and the Gabopentin seemed to be taking me into numbness more. My gf takes it for her back (which generates shooting electrical shock type pains down her legs to her toes) and it has been the ticket for her. She said it took more than a day, though, for it to really start working...can't remember how long...maybe a week? Not sure.
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Kam, thanks. I do remember it took awhile for it to work on my back abd I felt funny for a few days. The thing with the feeling you have ias it is what becamse painful electrical shock feeling because it becamse stronger. You might want to try it for a while, a few weeks. I took it for 6 months for my back. I think I really do need to try it for my feet before I cant walk anymore.
Thanks again
Ginger
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Dear Gingerbrew,
I will discuss the tylenol with my doctor, I have my physical next month. I will also ask him about the lorazepam, to see if that might be an option. Thanks for the suggestion!0 -
The doctors aren't sure if my neuropathy is due to chemo alone, or a combination of Sarcoidosis and chemo. I was diagnosed with Sarcoidosis last year.
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Hey, ladies,
I don't have anything constructive to add to this conversation--and by that I mean I haven't yet found a solution/cure/relief for the neuropathic numbness in my feet, due to Taxol--but I'll share my experience.
I've had numbness in both feet starting with my second Taxol treatment in July of 2008. Intensified with treatment and never improved. I tried acupuncture starting in January of 2010, with no noticeable improvement. Last December (2011) I saw a rheumatologist, as I have arthritis (knee replacement in July 2010, but still stiff and sore). I have trouble walking for more than 30 minutes at a stretch (using a trekking pole for support) and tire at that point--and by tire, I mean I'm gasping for breath. My hope was to figure out if all this was due to the effects of neuropathy; arthritis; residual effect of Taxol and Herceptin, or a combination of any of the three.
The doctor couldn't offer much information, but gave me a script for Cymbalta. I felt a temporary lift in mood from this (my knees still hurt, but I didn't care), but that passed, and I had such strong SEs (night sweats and very vivid dreams--no sleeping for me) that I discontinued it. No harm done, but exhausting in its way.
No improvement, so, after my oncology visit in June of 2012, on the recommendation of her NP, I made an appointment to see a neuro-oncologist at Dana-Farber, still trying to tease out the cause of my weakness in walking and lack of stamina and hoping to find some relief for the numbness that affects my balance and makes walking so uncomfortable. Lovely young doctor told me there was nothing they could do. All my symptoms were consistent with those of other people who experienced Taxol-related neuropathy. He said they'd had good results with meds that targeted neuropathic pain, but they have nothing that can treat or reverse the numbness.
So. Until someone comes up with a treatment for numbness in extremeties, I wear New Balance running shoes with extreme cushioning during the day (I work from my home) and spend a fortune on imported shoes and sandals for when I go out. Certain brands of European footwear (Finn Comfort, Sesto Meucci, Mephisto) are made for support and comfort and can make a huge difference.
I get discouraged from time to time, but try to remember "No day but today" as a way to focus on what I can do and what I have now rather than what I can no longer do and what I've lost. Not easy, but less hard when I think, No day but today.
Hoping for good health and better days for us all,
Ann
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We tried cranking up the dose of pamelor the last few months and I have to say the higher doses help. Its still there but much more tolerable. I pass it on just in case it works for someone else
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kmmd,
What kind of drug is pamelor? I'm not familiar with it. I was on a low does of Cymbalta, but since the SEs were so strong I couldn't see trying it at a higher dosage.
That's great that the pamelor is helping. Thanks for passing it along.
Ann
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I started with Gabapenten, but became severely allergic to it, now I'm on Lyrica. It helps but doesn't take the pain away.
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I was on here looking for some answers about soft tissue damage from radiation when your post came up as I did a general search. You talk about your Neuropathy which I can identify with. My Neuropathy however was caused by my Cervical Cancer treatments in 03, I went on permanent disability in 2010 after fighting a year for approval. This is definitly not something that gets out to often. I found my answers on INSPIRE for that. Now 9 years later I am going through Breast Cancer and found the chemo made my legs and feet tingle even more. I did try the Cymbalta route but it made me sleep continually. Wish I had it now. You were very lucky you had a position where they could make concessions for you. It would be good if you did a follow up article touching base on Neuropathy. In all honesty my Oncologist or his Nurse never told me the first time around about that possibility and for the longest time I kept telling myself I was crazy and I would be fine. My lesson though was don't just tell the Nurse what's wrong because they don't always tell the doctor. At least my Oncologist for the BC told me the chemo would most likely make my original Neuropathy worse before proceeding.
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http://www.medscape.com/viewarticle/809520?src=wnl_edit_newsal&uac=116793DK is an article about how the FDA is strengthening its warning about peripheral neuropathy and the fluoroquinolone antibiotics. I have had burning and tingling fingers since taxotere in Oct 2010; had infected seroma in Oct 2011 and got one of the fluoroquinolones, and lost all feeling in my fingers by the second day.
I really hate the burning & tingling at rest, pain with typing. No playing piano or stringed instruments anymore. MO said I would "learn to live with it" and I guess I have. But it has taken so much away from me, and I find it difficult to forgive the fact that the MO failed to recognize it early, reduce or discontinue the drug when it was very clear that I had the neuropathy. She said it would get better. I guess she was right, but better just ain't good enough to get me fully functional.0 -
You know that makes me mad. I took that class of drug I know three times during my chemo. I started with the neuropathy on AC...now it makes me wonder if it was the antibiotic. Which by the way 10 months later had an allergic reaction to it when given ore-surgery for my hysterectomy. Grrrrr is how I feel. The last few days I feel like somebody took a grillo pad to my feet.
Thanks for that info. Making sure my husband never takes them. He has diabetic neuropathy.
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Kittydog, glad to be of help and warning. I DO think anyone with pre-existing neuropathy is at higher risk of making it worse when there is an additional insult from other drugs, and this has been proven in some studies. So I already had the CIPN when the BS prescribed Ciprofloxacin (I think it was this one - could have been levofloxacin), I had increased tingling & burning within 1 day, and on day 2 my fingers went numb. I called the first day, was told it probably was nothing to worry about, called on the second day and told them I refused to take any more, get me something else! I had a temp of 102, horrible pain and infected seromas, told her I would rather die of sepsis than risk more nerve damage. I think I made my point. I am sending a copy of this article to her, and I know she will not be angry or anything - she is actually open to learning anything that can help her patients.
New question: Does anyone else seem to have "flares" with the neuropathy? Mine had settled down for a while, and then I got LE in May, and my left hand has been horrible since then, constantly burning/tingling, pain with typing (I have GOT to get back to using my voice recognition system for doing this type of activity!!!!) and playing piano, etc. I don't know if it is from overuse since I have not been using right hand much (bundled in bandages for a while longer). The CIPN actually started in my left hand, that is where I first noticed symptoms, and now that is where they are worse again. Or is it the weather? Any ideas?0
