Vent about Permanent Neuropathy

I did but that was after sinus surgery, dang apatite is still fine but I sort of forget to salt at times

I lost all of my sense of taste and smell during chemo. The only things that I could taste were pepper and horseradish. They eventually came back and my sense of smell is actually a little better than before. It was pretty damaged from sinus infections. Still waiting for some relief with my hands and feet.

I haven't posted in forever but do read this thread every once in a while. I lost smell/taste during chemo but it has definitely come back. Hands and fingers are fine again, but feet are still......NUMB. Especially left one. Right one is 80% better most of the time, and left is 50% better some of the time, but definitely aggravated by stress, and by the weather. My feet know when the weather is changing. Some days it drives me absolutely nuts. My doctors definitey downplayed this possibility....I was NEVER told that it could be permanent. They always said feeling would return six months post chemo. I am still taking a low dose of lyrica. I cut way back because it was really causing weight gain. I also take Vitamin B, but not as often as I should. What is Vitamin B Garden Spray? I will have to look for that. I have found that foot massages help the most.... usually the Chinese foot massage/reflexology. They are realively inexpensive and whenever I am having a really bad day, I get one. I think just getting the blood flowing down to the nerves (the dead nerves) helps.

I wish I could participate in a study or clinical trial..I would gladly do it. I have searched and searched for other treatments, but havent' found anything that doesn't cost a fortune and sounds really promising.

SO FRUSTRATING.

Hang in there everyone...

XO

Andrea

I was on the good circulation bandwagon way back...and I think it the therapies have any effect at all, it is probably due to just getting the blood flowing to encourage any healing that is able to take place.

BookLady1, that is great about your feet. I am the opposite. My hands were only very temporarily affected and are nueropathy free, but the feet have lingered on for 2 1/2 years now. I think I will be stuck with permanent dead zones in my feet. They do have good days/bad days, and the good always does coincide with doing something active to get the blood circulating.

ginger, have you done any pt for your balance mine has improved with pt

I was prescribed Metanx (a b complex that is bioavailable, so works better), it's not cheap (about $40 per month), and took about 6 months for me to notice a difference. In fact, I didn't think that it was helping at all, but I went off of it, and within two weeks my neuropathy pain was back full on, I've tried to go off of it several times, but every time, pain and numbness gets worse (way worse) so I'm back on it. You have to have a prescription, and it's mail order only, but It works for me, nothing else did. https://www.metanx.com/ here's a link for info. My PCP now prescribes it for me.

MinusTwo - it reduces mostly the pain, but I do notice less numbness when using it also. So side effects from the metanx. Everything else they tried me on was aweful, gabapentin, the anti depressants - didn't help with the pain/numbness and made me feel like a zombie! The only thing is that you have to take it for a while before you notice any difference, and that insurance does not cover it so it's about $50 (including shipping) out of pocket a month. But I've decided it's worth it.

another good topical is Topricin - they have it at Walgreens - watch for sale! 

Just a personal observation coming here - I have taken biotin since I got diagnosed. It's supposed to help with hair and nail issues which I had plenty of. Last month I ran out and didn't get more right away. Usually my neuropathy is numbness with shooting pains once a month. After I ran out of the biotin I was having shooting pains 3-4 times a day. Went back on biotin and they calmed down after two days. I don't know if this will help anyone else but it works for me. I also take a super B complex pill.

Like Bosum, I'm 2-1/2 year PFC, but only 1-1/2 years post Herceptin. I still take 5000 mcg Biotin daily. It seems to help the hair grow on my arms (ugh) but don't know that it's really helping my nails anymore. I was considering dropping it when I finish the bottle, so I'll be interested to see if my neuropathy changes. I also take 100 mg of B-6 and 1000 mcg of B-12 every day in addition to a standard daily vitamin.

I was becoming resigned to "this is as good as it gets", but a therapist in CA who is a friend and only works w/hospital patients said I should continue to stimulate & massage my feet all the time for more regeneration of the nerves. On the other hand, my feet are numb blocks of ice but I don't have pain - so maybe i should leave them alone!

Elimar - Thanks for the thorough update. I just hope that stimulation doesn't cause nerves to regenerate that will then cause pain!!

So weird. I was talking a long walk with my daughter and got 2 blocks from home ad my foot froze up into a wooden block. Limped the rest of the way back. Every step was brutal. Then 2 hours later it was fine.

The day before I got the wooden feet from sitting too long and NOT walking. Got out of the chair and shuffled like Frankenstein. Crazy stuff.

grace, you surely do sound like me although my docs are linking it all to my back problems including pinched nerve

GraceB1, Yes I really think that we should be given a more accurate portrayal of how MANY are left with neuropathy trouble. My doctor now does not even bring it up, but at the end of each visit I make sure to pipe up and say, "and I still have neuropathy in my feet."

Although my doctor did NOT give me any idea of how much chemo could set off neuropathy, I did find something online that broke it down to how much cumulative chemo it took to give something like 85% of the people neuropathy. I actually quit my chemo before I crossed that cumulative threshold, but I was having symptoms by my fifth round. The platinum drug was left out of my next round. I felt a little improvement so (stupidly) did have one more round with the platinum drug. But I felt maxed out at that point and said no more platinum-based in my mix. Yes, I am kicking myself for doing that sixth dosage. I know I would have rebounded better without that, but no turning back time.

The point is that there have been studies that know precisely how much chemo will produce neuropathy in the majority of patients; however, doctors never present it like that. They know which drugs are more likely to cause CIPN and not just something temporary. They cover it by saying "all patients are different" but the statistics do show that a majority will be affected at certain cumulative levels. I would have liked to have heard that straight up from my doctor. So, the doctor will monitor you and ask how you are doing, and our feedback is crucial. On certain drugs, when you experience "a little tingling" the damage has already been done, but most of us naively will tolerate a little tingling in our fight against cancer. As far as neuropathy goes, that is probably when the chemo should stop. On some of the drugs. On the ones known to be the worst causes of CIPN. But, unfortunately, that cumulative level falls under what is needed to eradicate the cancer in our bodies. It is one of the many instances of collateral damage of cancer treatment. When my doctor told me his main worry is the cancer, I knew that was justified. At the same time I knew that his practice and income revolved around giving me as much chemo as possible. At the same time I had other worries about what I might have to deal with after I finished treatment. Chemo may be out of the dark ages, but as long as it has so much collateral damage, I still think of it as very barbaric. I could read about the strides being made seven days a week but until the drugs are not damaging our hearts, other organs, and nervous systems, I still have to rant about it. Of course I am thankful to be alive. Duh! Who wouldn't be? But the treatments were all terrible. Every single one of them. SO MUCH room for improvement!

Hi All,
I am a visitor from a CMF ( a chemo protocol) message board. I was fortunate to have an MO who paid attention to my concern about CINP, and found another chemo cocktail for me.
I don't know if you all know about the magazine , now online too, " Cure Today". It is a fountain of current information, patient experiences, ideas about trials and new treatmenta etc. There was an article in a recent edition about research being done on CIPN, as well as the frequency of it, and how debiltating it is. I was hoping it would have information about cutting edge treatments for it, but not really. Maybe if you have an physician in denial about it, showing him/her this article and research might help them realize what you are going through.
Here is the link. The article is in the issue on Survivorship.

http://www.curetoday.com/articles/women-experience-long-term-neuropathy-after-chemotherapy-leading-to-falls

Best Wishes to you all, stay safe.

Windward