Vent about Permanent Neuropathy

sueco

I saw my oncologist yesterday. I was due for my fourth Abraxane chemo. Chemo three really hit me with worse neuropathy of hands and feet. She said I should skip chemo 4 and have a PET scan. Her original plan was to have four chemos and then PET. She did not seem too assuring that the neur. would improve. I am glad to hear you had improvement after two years. I have been having acupuncture which she believes in, but she was uncertain if it really would help neur. She said some of her patients have success with cannabis oil (drop in the mouth) so I plan to try which should be easy to buy in Colorado. I do wonder about reflexology. I have a person recommended to me but fear that pressure on my foot nerves could damage the nerves more? She also does not believe any B vitamin helps. Nice we have each other to learn from.

GirlPowerDebbie

Sueco -

I had reflexology one time about 18 months ago, and decided it was not for me.  It was very painful afterwards, it hurt to walk for 2 days.  I wasn't up for round 2.  Sounded good in theory but I won't do it again. 

Acupuncture helped, but at $100 a session not covered by insurance here in Ohio, that was a luxury I could not afford long-term. 

My chiropractor does magic things to my left foot (I have plantar fasciitis in that foot, too), I am going next week for an adjustment so I am looking forward to my foot feeling normal for a couple days.  Again, out of pocket because insurance companies just want to give you drugs, so eastern medicine is just BS and nothing is covered.  As my oncologist said very jokingly to me, what could possibly be good about 3,000 year old techniques?  LOL!  (She was joking of course.  She is all on board with complementary treatments.)

I buy a product from doTerra (essential oils).  It is called Deep Blue Rub.  I love this product.  When I start getting that sharp stabbing pain under my toes/ball of my foot, I massage a little of that cream into the ball of my foot and between my toes, and I get instant relief.  It retails for $35 a tube but lasts forever, you just use a little dab.  It is cooling and warming at the same time, sort of like Ben-Gay. 

Take care, all! 

GPDebbie

GirlPowerDebbie

Oh BusomBlues, I am sorry about your hair.  It took about 3 years to get mine back to where it was, but I have about half the hair I did pre-chemo. (On my head and everywhere else, for that matter.)  My hair was/is stick straight.  When it grew back in I figured out where they came up with the term "chemo curls".  It was very curly, and grayer.  I wore it short for a while and just kept getting the curls cut out of it.  Once it started coming in straight I worked it back into my bob. I still color it.  Not quite ready to go gray yet.   

GirlPowerDebbie

I went to the chiropractor this morning, they worked on my foot.  Going again Friday.  Wonderful!

 

Sloan15

I still have burning on my hands at night sometimes, but the neuropathy is better (8 weeks PFC). I've been taking a 50mg B complex vitamin everyday. The days I don't take it I notice the tingling more.

My biggest struggle is that I don't know where the neuropathy ends and the lymphedema begins, and you know how you feel everything when you think about it!

ktym

BosumBlues, is it getting cooler where you are? I always have more trouble when the weather gets cold and my feet get cold

Chloesmom

Iwas in Fla for a few days and my foot felt great. Back in PA again and got the zings and zoingsback . Maybe the weather does make a difference

elimar86861

The evidence of improvement is barely perceptible now, but the colder weather does not seem to be so hurtful on my feet (at least not yet) as it was last year. I'll take it!

MinusTwo

Eilmar - glad to hear you find the weather is less hurtful. Unfortunately we've had our first cold snap. OK, OK, I know it's Houston, but it did get down to 38 one night. My feet have very little feeling but they are (edited to say feel) FREEZING. I loved the picture of wearing thongs (foot wear - not undies) in the snow on one of the other threads. You'd think I live at the North Pole. I even need to wear wool socks to bed. And I walked barefoot all my life before BC. Maybe 2 years PFC I should go see the neurologist again?

proudtospin

I get it on the cold feet, sometimes mine are so cold when I go to bed that I have set up my bed with a poly comforter folded at the bottom of the bed, it gives extra cover to my cold totsies

elimar86861

Last year, my feet got achy & cold as I sat at the computer...I threw a heating pad down under the desk. Gotta do what we gotta do.

proudtospin

I used to ride bike outside all through the winter, till one year, no way could I find gloves or socks to keep my tootsies warm

I stopped riding in the winter

but now I have been told I have spinal stenosis so thinking that may have been the start of it all

proudtospin

sorry BB for a bad day just before the holiday

I am with you, do not get why they do not have a better answer about back issues but not ready for surgery, a pal of mine is recovering from her 4th back thing, first injury was as a nurse and moving a patient

hope you feel better today

MinusTwo

Bosum - Sending hugs. I know that won't take away the pain, but might bring you a smile.

dsgirl

Hello again.

Had an interesting chat with the foot doctor today,( off subject for a few words here, but I see him because I have several toenails that curve down, and I can't cut them with out cutting into the toes. Have known the doctor for years as he was my diabetic husband's foot doctor, and I have my nails cut every 3-4 months)

So today I mentioned that I have what I think is neuropathy in my feet, and a bit in my hands, and had no chemo, have no diabetes, but did have rads and also took 2 of the antibiotics that has been linked to neuropathy. He said lets test your feet and hands. I did not know one could be tested to see if neuropathy is present. Well, I stood on these mirrored tiles, and put my hands on mirrored tiles, and the tech runs the machine, took about 5-6 minutes, I guess. Yes, I have neuropathy in my feet, moderate to severe, and moderate in my hands. I told him my PCP had tried me on Gabapentin, but no help there. He suggested a supplement called NeuRemedy Plus with methylcobalamin. Anyone ever heard of it, or used it? His office is not in my small town, but he kindly comes once a month with his staff and sets up shop at the local hospital, and I can get some next month when they come back for the monthly foot clinic. I have bought something called Biofreeze from him several times, and it really helps if I have the pain in my feet, the numbness is always there, but when my feet get too warm the pain comes. My husband used it for his aging sore knees, and it does help on pain. Don't remember if I ever posted about the Biiofreeze, I think there are other brands, Maxfreeze is similar and available at the local drugstore.

Burr, MinusTwo, cold here in Central Texas, too. thirties overnite and 40ties for several days, finally hit 60 today, Yeah.

Dsgirl

proudtospin

Biofreze is good, I have also used something called Toprician or something like that

you just need to try stuff

dsgirl

proudtospin,

yes, we just need to try different things, we are all so different in how things affect us, something works for some, not others. Of course these topical things are only temporary relief, it does not cure or heal the damage.

I am thinking the product offered by my foot doctor may be something I will try, it said: "supports healthy function of the nerves in the feet and hands". Of course we have pain and numbness because the nerves are damaged, so will this product"wake them up" and make them healthy???? Sure wish that would be the case, but a bit doubtful, but will welcome any improvement/

dsgirl

MinusTwo

dsgirl - where are you in Texas? I understand we will have 39 degrees again later this week in Houston. I'll be pulling out the plumarias tomorrow.

I'm with you - I'll try it but I'm doubtful.

proudtospin

dsgirl. sounds like a good idea, let me know if what he gives you helps. I do not have a foot doc but have been thinking about seeing one

dang got too many docs~~

proudtospin

sorry that it is getting worse. I have spinal stenosis and my back guy ran a test to tell if I had nerve damage in my feet/ankles, I passed but actually if I had flunked, not sure what they would have suggested. Course the back doc wants to do shots but I am sticking with a homeopathic way. I do spend lots of time in the pool and have started walking in the pool and do think it helps

MinusTwo

Bosum - sorry you're still having pain. Very frustrating.

It must be about time for updates from some of us who have been dealing with this problem for awhile. Two years for me. I did go to a neurologist soon after my final chemo. She was willing to do some tests if I wanted, although there isn't much to be done except treat pain, so I decided to wait for 2 years to see if I might be a lucky one. Doesn't look like it. I do have a little sensation on the tops of some toes after 2 years, but the pads are numb. Weird cutting my toenails. Occasionally toes tingle, but luckily no pain. The pain is from the big toe nails hitting my shoes. They partially detached & then got a fungus. I'm trying to be patient with treatment, but I'm told it takes a year to heal. The balls of my feet are dead which sometimes causes a balance issue. And though there is some numbness up my calves, I can usually ignore that. My feet are ALWAYS freezing. I never had to wear socks to bed before tho. And I now have a heated throw on the end of the bed. What I miss the most is going barefoot. I was raised in CA, then New Mexico, then Texas. I don't think I ever had shoes on when there was a choice, and then it was usually sandals. I'm afraid to go barefoot now since there isn't much feeling. I'd sure hate to loose a toe. Hope the rest of you are having some improvement

MinusTwo

One other SE I forgot. I spent several hours each day walking around new towns on an east coast trip in the fall. My feet, ankles & calves were swollen every night. Hadn't happened before or since, but of course I haven't walked much since either. I know it doesn't sound like a neuropathy SE, but I don't have any other issues - like heart. or cholesterol, or... Anyone else notice swelling?

elimar86861

Minustwo, I totally second that emotion on your first post. I, too, notice that some feeling has finally returned to the tops of my toes, and even the toe "stems" but not the pads of toes. I can feel water temp. a little with my toes now (after two years!) Balls of feet have numbness, but I can feel pressure. Luckily, my calves are not involved. When I felt the neuropathy going up my leg during chemo, that's the time I backed off the chemo and nothing stayed in my calves. I have weird small areas on the top and bottom of my feet that are numb, but they don't bother me. I'd like to get my normal toes back one day, even if it takes 2-3 more years...

Because I knew my neuropathy was ALL due to chemo, I saved my money and never bothered going to a neurologist.

proudtospin

rose, so sorry and awful to think you are actually thinking of amputating

recently I took a walk around a nearby town visiting art galleries with a pal. The gallery tour was about 2 hours, my feet were messed but mostly my back since I also spent time siting in the car for about 2 hours. back not happy and I ended up at the chiro office who was able to work out the pain with his tricks

LindaKR

I figure if I were to have anything amputated, I would end up with the pain staying as phantom pain. But I understand what you mean.

elimar86861

rose50, I did have that crushed feeling in the beginning, but mine was more discomfort than outright pain. I got Anodyne therapy from a PT and I felt a bit better after 5-6 sessions, but I hesitate to say it was that which helped me or just the time going by. I wanted to be proactive, so got it within a few months of the onset of my neuropathy. Do not know if it would do you any good or not. Some like acupuncture, tho' no one has ins. coverage for that. Have the doctors not tried pushing the gabapentin at you? Nothing helps the numbness, but the drugs can help with the pain and many can tolerate them o.k. If you haven't tried any SSRI or SNRI drugs, it might be something to consider before going the amputation (!!!!) route. I know you were kidding, but your pain must be awful to write something like that.

Other than that, read thru' this thread because people have tried all kinds of things to get their feet more comfortable and while not all things work across the board, it can give you an idea of something you might want to guinea pig yourself with. Hope you find relief in something.

MinusTwo

Rose50 - I too am sorry for your pain. There are posts through out BCO that describe the help women received from drugs like Gabapentin & Lyrica for pain. And yes, acupuncture as Elimar says. I hope you will find something that works for you.

MinusTwo

Rose50: I haven't worn any shoes except Easy Spirit Travel Time, Sperry Dock Siders or occasionally oversize running shoes in a long time. Sad - but at least comfortable. Do get some pain meds for the horrible times.

Italychick

rose50, I am in no way minimizing what you are going through because I got neuropathy after round 5. One thing I have learned is keeping my feet super hydrated helps. I've tried the Vicks, and that's why I think it works, it holds in moisture. So whenever my feet seem worse, I put a ton of lotion, Vicks, Vasoline, whatever onmy feet and some socks. It's worth a try.

Blownaway

Rose50 - ditto