Vent about Permanent Neuropathy
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Thank you Kate for your reply. 2 years seems like such a long "sentence" to find out the fate of my future. Every night I go to bed praying that when I get up this will all be over and it will all be gone.... yes I guess I'm delusional. I am extremely cautious when I walk now.... especially if I am not in my house. I depend on furniture to move around and definitely use my sight to watch for obstacles etc. I use my cane ( after several weeks of being adamant that I didn't need one) when I go out and I hang onto the arms of my friends when climbing up stairs and/or curbs. I just don't trust myself when lifting my feet. I have always been clumsy but I must say this condition has heightened my awareness of my surroundings. I am currently working with my doctors office to obtain the names of good neurologists/pain management clinics that could help.
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Dawnmix, I echo what kmmd said. 2 years is about how long it takes to figure out if it is going to be permanent or at least very long-lasting. It has been 3 years for me, and this is the first year since chemo that I have been able to handle cold foods from the freezer without using gloves! I keep a pair of wool gloves in my kitchen drawer for when I brought in groceries, and I used them in the grocery store for getting things out of the dairy case or freezer, and I have noticed that has improved significantly over the past 6 months. However, the constant burning/tingling got worse and was making me crazy, so I went back to my medical toxicologist and started using a topical cream again, which works OK for the burning, but does nothing for the numbness or lack of motor function. I never thought I would say this, but I am lucky in that it has affected only my hands and not my feet. Of course, loss of hand function has meant loss of my job, most forms of hobbies and entertainment, and what the neuropathy didn't take away, the lymphedema has finished the job. I still manage to do some art work, knowing that I will be paying the price in pain and swelling for the days afterward, but I have the power to make those choices. I am grateful my feet were not affected more - still have just a little burning/tingling, worse when I have been on them for a long time, but seem to have pretty good proprioception and balance.
One thing to always keep in mind is that once those nerves have been damaged, they are more susceptible to further damage from diabetes and other drugs. I had a post-op infection and was given a prescription for ciprofloxacin, had numbness and pain in my fingers get really bad the first day, and the second day on it I lost all sensation to all my fingers. I called the doctor's office (in 2012) and told them I was not taking that med, I had looked it up and there was a warning that it MIGHT cause neuropathy, they kind of blew it off as highly unlikely, but gave me a different antibiotic because I refused to take any more of it. And guess what - in 2013 the FDA put out a strong warning linking the fluorquinolones to neuropathy: http://www.webmd.com/brain/news/20130826/fda-strengthens-fluoroquinolone-warning
So the thing I am trying to say is, if you notice changes, don't let the medical folks ignore you!!! I saw a neurologist initially who is supposed to be the best for diabetic neuropathy, but she really had nothing to offer me more than the average run-of-the-mill stuff, and so I got a referral to a medical toxicologist who has been my best advocate - she really understands how toxicities cause lots of damage to our bodies in lots of different ways.
Sorry this is so long. I will shut up now!
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Linda-n3, That is a good point. To watch out for subsequent medicines that would probably cause no nerve damage to the average person, but now could worsen our condition of already having damaged nerves. Only my feet are affected, and opposite to you I was thinking I was lucky not to have to have my hands involved. Maybe we are both trying to look at the "bright side."
I only ended the chemo four mos. ago, is it very likely that my hands could still give me trouble in the months to come?0 -
Thanks so much to all of you who personally checked on me since I have not posted for 8-9 days.....it really touched my heart♥
So recently I was able to get AmaWaterways to sponsor 2 autumn river cruises in Europe .....for every booking they will donate $500 to breast cancer research, prevention and treatment.
I started a NEW post in the fund raising section.....
http://community.breastcancer.org/forum/63/topic/815789?page=1#idx_1PLEASE
bookmark it as one of your favorites to maybe join me on one of the cruises or at least to "bump" the post as soon as I have all the info!
Thank you for your help! xoxo
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Oops...here is what I wanted to share with all of you...
http://community.breastcancer.org/forum/63/topic/815789?page=1#idx_1
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I ended Taxotere/Carboplatin/Herceptin/Perjeta the first of August. I've had problems w/neuropathy in fingers & toes & feet & legs since the 3rd tx, but I went ahead w/treatment at the advice of my MO since this is a recurrence, I'm HER2+ and not lots of other options. Unfortunately there was not a pCR so now after surgery I'm doing Adriamycin/Cytoxan. Of course the advice of the MO is that it takes up to 2 years to know how much is permanent.
I don't have any other medical conditions that might cause neuropathy except chemo, but I read one place that said it could be hereditary. My Dad did develop peripheral neuropathy in his feet around age 90.
So one of the nurses at the infusion center said yes, Cytoxan could cause or aggravate CIPN. My on line research seems to confirm that yes, both Andriamycin & Cytoxan make my neuropathy worse. I've made an appointment w/a neurologist for next week and looked up a medical toxologist in my area. Like all of us, quality of life is a BIG issue w/me. Right now I'm torn about going ahead with the last A/C treatment or stopping now. I'm also torn about going ahead with radiation since I've read that can cause additional problems.
Any thoughts or comments will be appreciated. All your posts are very valuable.0 -
A retreat place for all: http://community.breastcancer.org/forum/102/topic/8158250 -
MinusTwo, sorry to hear you are facing such a hard decision. I'm never comfortable with medical advice on these boards. Sharing experiences, things to watch for, things we find out talking to each other that our medical team may not know because they haven't been through this themselves, that I'm comfortable with. However, things like should you do A/C I really think you should talk to your Onc about. Others here may feel differently, but, that is how I feel about it. The advice you won't know about neuropathy or if it is permanent for two years seems to be true and very standard advice. I think all you can do is get a feel here about how miserable permanent neuropathy can be and talk to your doc about quality of life scares vs how worried he/she is about recurrence if you don't do more chemo.
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Hello all! So I went to the onc. today and although she is stumped as to why the neuropathy has gotten worse instead of better she was very supportive. She has decided I should try Cymbalta. She was also very receptive to my request to see a neurologist/pain management clinic. She also has referred me to physical therapy to see if that will help. I'm hoping all of this will be helpful. She did warn me - as all of you have -that she cannot predict when or if this will go away. I've decided not to worry about the future. I'm going to try to take each day as it comes.
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kmmd - I've already had three A/C tx so it would just be dropping the last one. And yes, I will talk to my MO but I have found a wealth of valuable information on these boards from other folks' experiences. I'm no longer comfortable with "wait two years". The neuropathy is so much worse now than it was after I finished the Taxotere/Carboplatin that I've spent hours researching technical journals. Looks like this is also an SE of A/C even though it's not up front. But even more - it's an SE of both Herceptin & Perjeta as well as radiation therapy. And it appears some people are more susceptible. So yes - there will be some serious discussions with the MO after my meeting with a neurologist on Friday. And then maybe a 'medical taxologist' as recommended on this thread. At age 70, quality of life weighs heavily with me against length of survival.
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Saw PCP - My primary doctor is going to help me get off my nerve pain med to see where my pain really is. We made this decision together, feeling that it is what is causing the dizzy and nausea. It is starting to cause other issues like not eating, getting dehydrated and constipated, so even though the pain will come back (it already has) it is worth it to give my body a break from it - its been 2 years and 5 months that I have been on the neurotin (gabapentin).
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GmaFoley - good luck with the re-evaluation.
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I know I'm going to be in pain and that scares me. Just dropping it 2 weeks ago at 300mg, the pain level went up to a 6/7 and if you touched the breast its a 10+.. I guess I'm blessed that it isn't in the feet or hands.. How do you all do it??
Guess I will be doing alot of breathing and imagery??0 -
dawnmik so happy to hear you're getting some relief
Minustwo I tend to come down heavy on the quality of life side also
GmaFoley, most days I'm so used to it it becomes part of the routine. Then something happens and I think, I can't stand one more thing, not one more bit of pain. Then the next day it becomes background routine again. It has robbed me of my vocation and many activities I used to take pleasure in. So I do better looking forward and not thinking about what I've lost, that becomes overwhelming
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Kmmd - I so know what you mean.. I now seem to hide myself in a game I play online with my London friend. We skype as we play. She also gets up and keeps me company while I'm working. But there is more to life than sitting in front of the computer - My grandchildren for one. They don't care how I feel they will sit there with me and talk and I can watch them play.. I so wish they were closer, so I could do that during these hard times. It would keep my mind off the pain.
Needless to say, rough morning.
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GmaFoley. I don't have grandkids, but, I have to say DS's pets are incredible therapy for me, so I can get a rough inkling about what grandchildren would mean and I don't think you can box up that type of medicine, it is like gold
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kmmd, your response to GmaFoley says it all.
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MinusTwo, I am a little behind in reading the posts...and sorry to hear it was more chemo for you. Besides the general feeling of just being poisoned, I slightly cut short my course of chemo due to advancing neuropathy. Of course, that is not something I could ever recommend for others because although it could be a saving grace for one, it could be folly for another. Only time will tell which it will have been for me. My foot neuropathy is more numbness than pain, but it does get me down to think that it may remain like this for life, because it does affect the quality of my life. I remember so well how I just had regular, normal feet at the beginning of this year and now they are like two strangers.
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Eli: Thanks for your response. My toes/feet/calves & fingers are all effected. The neurologist agreed that while it may get better over 2 years (like everyone else says), it will NEVER go back to where I started this year. Can't imagine how you ladies manage who's life involved intricate finger use like playing a violin. Also I just read a pretty convincing study that if you don't have pCR (pathologic complete response - tumor disappears) before surgery (which mine didn't), more chemo after surgery doesn't buy you much benefit - something like 3% over 3 years. And I've already had 3 of 4 tx. My MO will have to say something very compelling for me to change my mind & go ahead w/the last one.
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Hi and Merry Christmas my survival sisters! I love this thread for letting me vent but I'd love to hear from someone a couple years (even three or four years) out who say could tell me "yes I had that much pain and now my feet are ok" I have to keep telling myself I am only about 7 months out from my last Taxotere Carboplatin treatment (and still receiving Herceptin). During my six treatments I only had a tiny bit of tingling that would come and go between treatments. Hardly even enough to mention...but my last treatment brought on my current issue. My feet, especially if I have been standing all day are so painful...also cold brings on the feeling (and of course it's winter so I'm careful not to walk on my tile floors without slippers and thick socks. It's PAINFUL! I felt like a baby, complaining after my chemo was done and thought it would just go away...it hasn't! It has gotten worse. Some days, I can hardly walk. I have taken strong pain medication for the problem and it works, but really...I didn't think it was going to go on and on....I hear it may take a couple years?!?! I tried gabapentin but it made me so sleepy...I want to try Lyrica...anyone have experience with it??? I'd rather not have to take anything but I don't think pain meds are good to take for years....I'm glad it's just my feet...if it were my hands, I couldn't work. Please let me know what works for you either medication or other treatments - thanks! Wishing you all a Happy and HEALTHY New Year!
Kathy
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Anyone try this stuff? I'm desperate...looking at an expensive vitamin supplement called Neuropathy Support Formula
Benfotiamine and/or Methyl B-12 methylcobalamine have been shown in clinical studies to produce nerve regeneration.
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Sorry but Feb. will be four years since my last chemo. It did improve some in the first year but since then nothing. I have tried both drugs with no luck. This past summer I tried the neurotin which did help the lighting strikes but it got to the point my feet had become more sensitive so I stopped it once the worst of summer was over. I have more problems with heat making my symptoms worse and extreme cold...which we rarely have.
I have never tried any creams. I have an allergy to lotions and we are not positive if it is lanolin or something else.
My feet have been throbbing this past week. It was 82 then Christmas day a high of 47. Then add the fact that I indulged and had ham for Christmas my lymphedema legs and arm are very puffy but I so enjoyed having ham. The extra fluid will come off and I will get some relief from that but my feet just feel funny with this extreme weather change.
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iluv - I'm 5 months out from Taxotere/Carboplatin. Current course of Cytoxan/Adriamycin have made my neuropathy worse. I saw a neurologist last week who I think finally gave an honest answer. It can take up to 2 years for side effects to recede. 70% supposedly have some improvement but she said I should not expect to ever get back to where I was - which was no neuropathy. Don't mean to send doom & gloom, but I'd rather know as I move forward. I'll probably refuse the 4th A/C treatment next week since I still have radiation ahead & Herceptin for a year - and maybe Perjeta if I determine that won't make it worse.
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from everything I've read here and elsewhere there is likely permanent nerve damage, some of which you can hope to mitigate and some never. It will be important to analyze any chemo change because some will make it much worse.
The oncs an othe med people just aren't getting it and keep repeating promises they can't really stand behind.
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minus2 hope you and your Onc are talking well and you're able to make a decision that works for you.
Iluv2scrub (love your "name") My Onc says they know a patient who started to feel better more than 4 years out. I have a friend who had neuropathy, but, not painful, who had to go through chemo again and was obviously really worried about it since she needed a taxol, her neuropathy didn't get worse. So, yes, we'll all keep hoping for you that you're in that group of people where things do get better.
My goodness the cold is doing a number on my feet and even my hands this year. Much worse than I remember last year being. So that is my VENT for today, uggghhhh grrrrrrr!!!!! #(*#%m&@#)@ seriously, it was bad enough I didn't need worse.
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ok I'm afraid to admit the positive outlook I was trying to have was short lived. I must admit I'm scared, angry and depressed all at the same time. My hands are numb and tingly most of the time. It seems to be worse in my thumb and :trigger" fingers the last week or so. My feet are completely numb, traveling up to my knees. Both hands and feet have been alternating freezing cold and burning fire. I try to ignore symptoms thinking they will go away however thats not happening. I don't think I am strong enough to deal with this for the rest of my life. I am only 46! I want to be normal again. I want my life and my job back. This can;t be all can it? I have been on the cymbalta for a week now - haven't noticed much difference. Anyone else on cymbalta? How long did results take? What were they? Im sorry to be so down, I don't have anyone else to talk to. Thanks for listening.
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I write this same thing every few pages because the doctors do not seem to be pointing it out. Mine sure didn't. Cymbalta has a moderate interaction with Tamoxifen which, in some studies, reduced the effectiveness of the Tamoxifen. It seems to be worse in those who are "extensive metabolisers" of Tamoxifen (and there is a simple CYP 2D6 blood test your doctor can order to discover if this applies to you as an individual.) More can be read in this link:
In the bottom paragraph, there is the caution to avoid Cymbalta, and several alternatives are mentioned.
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Linda-n3. I hope you don't mind a little plagiarism but I see as this thread grows the info on the cream gets lost and some others may find it helpful. I know I have. My compounding pharmacist even gave me a tip that the nerve path from the area of pain is to the L4-L5 intersection right about the tail bone and suggested also treating there. I haven't started that but its worth the advice. Numbness and flat footed shuffling are my situation now but I would say the cream has definitely improved it to manageable from miserable burning and lightening shocks. Thank you so much for finding Dr Barton and sharing. At least I can walk but long distances are still tiring. The numbness that I could feel traveling up my left leg backed off.
"Nov 4, 2013 07:02pm Linda-n3 wrote:
Deb, cytoxan has also been implicated in neuropathy. If you already had CIPN, you might be at higher risk for it from other drugs. Mine has been exacerbated by Cipro, and maybe by one of the meds I am on now - letrozole (Femara) or everolimus (Afinitor) as my fingers have had more tingling, then started having the "hit by a hammer" pain a few weeks ago, and my teeth all hurt like they did during chemo. At least I can eat without much more discomfort to them, unlike during and right after chemo.
Debra Barton, RN, PhD has researched and published a lot about this and other symptoms related to chemo and cancer. Her one article is athttp://www.ncbi.nlm.nih.gov/pubmed/21814197?dopt=Abstract and in it she reviews the lack of evidence for ANY of the usual drugs to help CIPN, including gabapentin, lyrica, the tricyclic antidepressants, etc. But some of the work for diabetic neuropathy, so the thought is maybe they will work for CIPN.
But here is a problem: in clinical trials, if something only works for less than half of the patients, it is deemed "not effective." But for those patients for whom it DID work, it was definitely effective IMHO!!!! And just because a drug works for 90% of patients, if you happen to be the 10% that it doesn't work in or who have severe SEs, then it is NOT effective! So it is still a trial and error thing, finding the plan that will work for the individual patient, because we each have a unique genetic makeup, metabolize drugs differently, have different drug receptors, our tumors have different drug receptors, etc etc etc, so bottom line is, keep trying, and eventually maybe SOMETHING will work for you!
I have tried acupuncture, and it did not relieve the burning/tingling pain of CIPN, but it DID give me the deepest relaxation I have ever had in my life! Wonderful from that perspective!
The only relief I have had is from the topical cream I am using. The "recipe" for it came from Dr. Barton's work and clinical trials, but my doc and the compounding pharmacist "tweaked" it to make it more concentrated so I can use less of it and get it rubbed into my fingers in less time. It is a mess, but I am sticking with it for now - it took about 7-10 days to feel relief, using it twice a day. Now I use it once a day faithfully, and don't worry if I miss the second dose because it is pretty stable for now, and I really don't expect much more improvement. Sure wish there was something to take away the "hammered" pain ...
I am with kmmd - trying to find something good to do each day, living without the pleasures I had in my previous life before BC. When I think too much about what I have lost, I get very depressed, so I try to think about what I can do each day to have some fun, some beauty, some peace, and try to find something to be grateful for. I am grateful for the love I find everywhere in the people I meet, grateful for a crisp fall day, grateful for my DH and family, grateful for a hot shower when the pain is bad - even if I am not truly grateful for life itself.
If anyone needs more info on the topical cream, PM me. My medical toxicologist and the pharmacist have worked to help me, and your own doc may be able to talk with either Dr. Barton or my doc to get a better idea of this cream's ingredients and use. The pharmacist here uses a different base than the clinical trial used.
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My neuropathy discomfort doesn't approach the level of most of yours, but in reading your post Chickadee, of the NIH abstract posted in Linda-n3's post, I came up on this at the end of the Abstract:
Finally, there is a lack of evidence of effective treatments for the pacitaxel acute pain syndrome (P-APS), which appears to be caused by neurologic injury.
I'm shocked now to read that what I experienced 2-3 days after every Taxol infusion has an actual name?? It was barely acknowledged by my MO. So is this "neurologic injury" different from the neuropathy I ended up with in my feet? That P-APS was experienced by me, primarily in my legs, not feet. It was horrible and I finally resorted to hydrocodone to get through that day or two every 2 weeks. For awhile, my left foot would give way and I was a bit incontinent, but other than that, the PN in my feet is all that I'm left with. Could this "neurologic injury" explain why my balance is so bad since chemo? Perhaps even why I can't remember names?
Did anyone else have P-APS and is this something companion to permanent CIPN??
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