Vent about Permanent Neuropathy
Comments
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Has anyone had any success with acupuncture?0 -
Elimar,
I had 12 sessions of acupuncture and got no relief at all from the numbness and pressure I feel in my feet. (Although it was lovely and relaxing.) I have a friend with painful diabetic neuropathy who gets relief from the pain with acupuncture.
Some of the treatments widely prescribed for CIPN seem to help with pain; nothing yet seems to work for numbness.0 -
I also tried acupuncture, can't remember how many treatments, but a couple of months. No relief, but had great relaxation!0 -
Hi ladies, I've been missing in action for a while. I went back to MO office. It seems that the dr I spoke to originally did not prescribe anything because I did not complain enough and did not specifically ask for anything. Since It had only been 4 weeks since final chemo, he was not concerned. He was more focused on leg swelling. The older dr that I spoke to this time says that he does not like to prescribe drugs in the early stages unless the neuropathy is painful every day. Since mine is only irritating on most days, he recommended that I take 100 mg of B6 three times a day for six months. He said that this works in most cases.
I started taking the B6 about 8 days ago. I have not had any pain and the tingling has been really irritating on 2 nights. I am keeping my fingers crossed.
While in the drug store today I happened to see a diabetic neuropathy cream. I started to buy it but it cost $30 so I left it in the store.
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ask your doctor to show you any information that B6 works for "most" of us.0 -
DebDylan - ask you doctor about "RSD." I have no clue if that is what you are experiencing, but I've heard of 2 cases recently, both caused by an IV, or thought to be so, and pain in the extremeties, though in both cases the pain, other than the local site, developed over a period of months, not immediate. I'm not playing doctor and this is just a wild arse possibility, but possibly worth asking about.0 -
GwennyMD, B6 did not work for me. But remember that each of us is so different in what we respond to and how we respond.
I think the docs are just trying their best to help us because they really really do not have anything to offer us that the KNOW will work ... I truly think they try to help ... I think some of them are baffled by their lack of knowledge and understanding. I think maybe the neuropathy really ISN"T all that common, or at least in a single doctor's experience he/she may only see a few cases in the hundreds of cancer patients that they may see, so that is not the thing they spend the most time researching, and when it affects one of their patients, they are just taken aback, probably feel bad (my previous MO told me she was so sorry this had happened to me - I think she really DID care, but part of it was her fault for not listening to me when it started with the first dose!) and she tried a succession of every drug and treatment listed in the books and the literature, all without success or with such bad SEs that I couldn't tolerate them. So sometimes I am angry with her for getting me into this mess, but I DO understand that most of her patients do NOT have these problems. So I did the glutamate to try to prevent, also B6, B12, NSAIDS, antidepressants, anti-seizure meds, tramadol, etc etc etc.
As you can tell, I am in a rather forgiving mood tonight, despite having had a miserable day physically, but I have a pumpkin pie in the oven that smells terrific and plan to enjoy it tonight, despite all the other crap from today!0 -
B6 did squat for me.0
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My doc talked with me about the topical cream from a compounding pharmacy. She also indicated that it was expensive and not covered by my insurance. Can someone give me an idea about how expensive it is?
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I had ELMA numbing cream for my port during chemo. I had a lot of it left, so I used it on the bottoms of my feet on the worst days until I had used it all. It helped some, but only lasted about 4 hours. Does the other cream last longer than 4 hours? I would be willing to try it.0 -
My MO had me take the Glutamine on infusion days. I also took B-complex. I didn't take B-6 by itself. Do you know if there are contraindications of taking that much...3 times a day? I will try to read up on it this weekend. If the contraindications are not bad, I would give it a try.0 -
Eliminar-Love the feet pic.Mine are much lihke this now for 5 years.I just wrote my PCP about Anodyne Therapy and he hS not heard of it. She claims to be checking it out more ' . Am not holdin g had.my breath.My feet and hands effected a nd daily chores hard to do. Even typing is tedious.
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I've only had three Anodyne treatments so far. They say I should have 10-12, but as it is now out-of-pocket, I may have to make my judgement after 6-10. All I am looking for is a tiny improvement, a step in the right direction. (Pun intended.) If anything, I have had a slight worsening, not with pain but in the area affected. It seems to be spreading thru' my foot arch and back into the heel now. For next week, I asked the PT to add some massage to my treatment (which insurance covers as "manual therapy.")
I tried L-Glutamine during treatment, but less than the 3 gm a day dosage. When, I used up the last bottle, I just discontinued. I do take B-12 and B-6, and have for a few months, with no improvement. If it takes 12 mos., 15 mos., 2 years, whatever, and I do eventually get better, I will have no idea if the supplements did anything at all, as TIME might just be the prime healer.
So far, I don't have pain or numbness in my hands. I understand that can yet develop, but I hope it does not come to that. I did notice I was worse at the keyboard when I was in active chemo, and now I feel more coordinated. It's just my darn feet.0 -
Auntienance, you may want to talk with your insurance folks about whether or not the cream might be covered. When I first got it, it was $75 for 2 weeks, but after some checking around, got the pharmacist to check and they got it down to a $5 copay every 2 weeks. I didn't get any refund for the first couple of fills, but after that it has been fine. The insurance company initially approved it for a year; I went off it for a while and was doing fine until I had recurrence and started new meds and developed LE - not sure what triggered it to flare up again.
FLWarrior, the compounded cream takes a while to get some effect, and its effects also wear off gradually, so once you get to a steady state of relief, it is around the clock relief from my experience. I was very compliant with using it twice a day, got some relief within a week or so; now that I am several months into it, I occasionally miss a dose or two, depending usually on activities, and it does not set me back unless I miss a week of it. Much better than the temporary relief from EMLA.
Too much B6 can actually CAUSE neuropathy, so be careful with the supplements. I cant' remember how much I was taking, but I had the doc check my levels and it was in the toxic range, so I quit taking it, but that was over a year ago. I think if you take the usual amount it should not be a problem. All things in moderation, they say.0 -
I just applied the compound cream I received yesterday. It wasn't difficult except for my left leg is hard to pull to where I can get to it. At first I was told it wouldn't be covered but when I picked it up insurance had paid. I will ask next pick if there were any time constraints.
I'm going to try to make notes for my onc. She's skeptical but willing to try something new if it will help others0 -
What is the name of the cream, or what is it called?0 -
Elimar, there is no name at this point. Google Dr Debra Barton at Mayo in Rochester,Minn.
http://www.mayo.edu/research/faculty/barton-debra-l-r-n-ph-d/BIO-00027791
http://www.ncbi.nlm.nih.gov/pubmed/20496177
I approached my oncologist with this information after reading Linda n3 remarks. I want to see if it will help me. So it is a cobbled together personal approach with some science behind it.0 -
I already had diabetic neuropathy in my feet which got much much worse after taxotere. It went from annoying numbness on the bottoms of my toes and ball of my foot to out and out shooting pain, burning, "electrical shocks"and severe numbness all over my foot. I trip a lot. I hate it. It's been two years since my last treatment.
My best shoe solution has been easy spirit traveltimes with gel sole inserts. I can be on my feet for many hours wearing these. Fortunately, I'm retired and don't have to dress up much these days (even though they come in lots of colors ;-)
Thanks for the info Linda, when I see my doc next week we'll talk again about the compound cream. I know a little more what to expect now.
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Musical your description of planning your day around the neuropathy sounds exactly like my days.
Linda is right I've seen several articles about too much B6 causing neuropathy.
I pulled a few articles based on what I could find for some of the questions people have been asking about.
http://www.ncbi.nlm.nih.gov/pubmed/24066010
http://www.ncbi.nlm.nih.gov/pubmed/23996720
http://www.ncbi.nlm.nih.gov/pubmed/239837880 -
Auntienance...speaking of shoes, my new Aetrex Trail Running (I walk) shoes arrived yesterday. Touted for Diabetic Neuropathy. WT_? They feel brick hard and they have my heel way above my toes (putting most of the pressure on the balls of my feet - not good), besides digging into the sides of my feet. I'm thinking I should try the Earth Shoes of yesteryear where the heel is lower than the foot. Or change from one to the other depending on whether I'm walking uphill or downhill. (Walking uphill is easiest on feet, flat the worst, downhill somewhere inbetween.)0 -
Shoes: I know we're not supposed to wear sandals but I find my old SAS slip ons very comfortable. Sort of like 'Cozy' but mine are old enough to have buckles instead of velcro. Auntie Nance - yes for easyspirit Traveltime! I'm able to wear those now that my big toenails aren't actively falling off. But because my feet are so numb, I feel most secure in my old Sperry Topsider boat shoes. Hmmm - what does it say about me that all of these shoes are more than 5 years old? So speaking of dressy shoes - wonder which pair I'll wear to Thanksgiving dinner w/my Ex and his wife at McCormick & Schmicks? Actually my fuzzy black slippers are the right color!!0 -
Thanks for the info. Chickadee.0 -
My take on ALL the collateral damage of cancer treatment... Although the docs claim to be "concerned" with the S/Es we report (regardless of whether they take responsibility for them or not,) in truth they are rather single-minded with their "kill-cancer thinking." When I was getting rads to my pelvis (different cancer) and I made the offhand comment to the RO, something like, "Oh great, is this going to be giving me uterine or bladder cancer in the future?" He was honest enough to reply, "Well, we are hoping to keep you around for twenty years or more, and if something does develop down the road, we'll tackle it then."
The point I am making is that our MOs big focus is addressing the clear and present danger of cancer spread, and anything else going on is a mere footnote. If any of those "footnotes" are something severe (cardio issues, pulmonary issues, etc.) you get handed off to the next specialist. I am not saying that the MOs are uncaring or unfeeling. I am saying that the current treatments are barbaric in that they, themselves, do a lot of harm to us. The "do no harm" credo does not apply in cancer treatment. It is more like, "do the lesser harm" right now. You have to wonder how many long years will it be until more humane treatments come along, let alone a cure!!!
Apologizing in advance for anyone I bore or anger with my opinionated writing. Sometimes I just have to get it out.0 -
Palliative care. Palliative care. It has to be part of any oncology practice. That's what we aren't getting in addition to our chemo, etc. it's still just a vague idea to the money guys and my sense is it's not regarded as a money maker.
Compassionate nurses, physicians assistants, even researchers like Dr Barton and the others on these studies, that's the assistance our oncologists need. So they aren't left to guess something might help.0 -
Eli: Right on !! I see the same issues w/docs on all these threads. Fat grafting, neuropathy, radiated skin, Allergan implants, acrylic nails, supplements yes or no, and don't get me started on lymphdema. I love my MO and will wait 2 hours to see him at the end of the day when he has time to sit w/me. I do understand he really doesn't have the time to research & teach & practice. At least he says "Not usually" instead of "never happens", and he listens when I bring him info. I'll be pushing him for some hard answers the first of the year about long term benefits vs. problems down the road before I decide to go w/radiation. Some centers have a "nurse navigator" who supposedly takes the time to pass along info & talk as much as you want. I'm not so lucky. It would sure be less stressful to be one of those patients who never questions anything & just says yes sir/yes ma'm.0 -
Palliative care...yes yes yes.....my palliative care PA is my best asset thru this whole journey...LOVE HER!
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elimar don't ever apologize for venting. That is exactly the reason I started this thread, we need a place to vent about how much this sucks! It is the denial that pisses me off too. Being told no way I could have neuropathy, then being told it always gets better. Same with the lymphedema. The nurse seeing me kept scoffing at me telling me I had no swelling. Well I did. The lymphedema was so bad it caused nerve impingement and I had enough damage that I had muscle atrophy. The swelling was there. It swelled enough to mask the atrophy and the arms looked the same to her during her brief cursory look. Instead of examining me she dismissed me, actually scoffed at me and more damage was done during the delay to treatment. That is what gets me bitter. It is hard enough ending up with these issues and living with them every day, but it was being dismissed and scoffed at when I complained about the neuropathy and lymphedema symptoms that just grinds me.0 -
kmmd, I second that emotion!0 -
Well what brasses me off more than anything is people expect you to be DONE with BC as soon as your txs are over. Oh, and that better be sooner rather than later. Never mind that LE is a RUDE reminder EVERY SINGLE DAY of what youre going to be spending a good part of your day managing. Fat chance of forgetting it when you blow up like a balloon coz you slightly overworked your arm or you ate too much salt or youre trying to balance it out with what PN is doing at the time....and for which there is little or no relief. We have to suffer this and then its a crap shoot as to who we get on our med team. These can be anywhere from totally amazing to totally idiotic. As if we dont have enough to deal with than arrogant medical people.0
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Does anyone know why the neuropathy gets bad at night which can sometimes prevent me from falling asleep?
Thanks for info about B-6 se's. I think I will continue for a few months and try over the counter cream.
During this past 11 months of dealing with BC I have actually met a couple of drs who enjoy explaining things and answering questions. They were both younger women. They said that they wished that more paitents would ask questions so that they can assist in their own healthcare and decision making.
Minus Two - I had a fantastic consult with a radiation dr. When she did not have answer she called another specialist. Since I was a borderline case she consulted with senior specialist and my BS before making final recommendation. I had bc in both breasts and 2 postive nodes on right side. Some of the factors they used were number of nodes affected, size of tumor in nodes, size of tumor in breast, stage, and whether patient is pre or post menopausal. Ask many questions.
Fortunately, I did not meet requirement for radiation under any of the criteria considered. Like most doctors she still would have recommended that I do it as a precaution if I was not already planning to have BMX. Radiation can cause problems for skin, nerves and blood vessels if you want to have surgery.
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