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help with neuropathy

VictoriaSF
Posts: 165
Joined: Dec 2010

hello
i am a week after my second treatment of carbo/taxol and neuropathy is horrible,
it is annoying and nothing i can do about it
please tell me if you have any advise
i have tried hot bath - hepled for little bit,
pain medication helping but not much
i have read that eating ginger helps...
any other suggestions?

Victoria

anicca's picture
anicca
Posts: 335
Joined: Dec 2010

The exact same thing happened to me. My NP told me to take 50mg B6 and 250mg magnesium daily. This actually helped. The shooting/stabbing pains went away, and I was left with just some superficial numbness and tingling. My feet are still affected 5 months since the end of my 6th treatment, but my hands are completely back to normal. I have to wear my skates tight, and that seems to be what's holding my feet back. I also had a touch of peripheral neuropathy in my feet before my diagnosis from the tight skates.

Sandy10's picture
Sandy10
Posts: 82
Joined: Sep 2010

Victoria,

I also have neuropathy in my feet, legs and my hands. I take 300mg of neurontin 3 times a day and 5/325mg of percocet 4-5 times a day. This helps me a lot. My last chemo was july 9th last year and I still have the neuropathy. My doctor says it will go away but it takes time. The neuropathy in my legs is what bothers me the most because it feels like my legs "vibrate" and I have the shooting pains in my muscles and an aching pain in my bones. If I don't take the meds, It is unbearable (especially at night when I'm trying to sleep). I also have found that a short walk in the evening helps. So, my nightly regimen is a walk after dinner,then neurontin and percocet together and then a nice hot bath. That usually makes it better and I can sleep. Hope this helps.

Sandy

VictoriaSF
Posts: 165
Joined: Dec 2010

thank you ladies
i will try to talk to my doctor tomorrow
in the mean time i am taking percocet
but i did hear about bvitamin and magnezium too

will keep you posted

good night
V

survivingovca
Posts: 23
Joined: Jan 2011

I had really bad neuropathy in my hands and feet. I started taking B6 and B12, as well as a teaspoonful of l-glutamine powder (its an amino acid, often used by weightlifters) mixed in juice every day. I no longer have neuropathy. It completely went away! L-glutamine powder can be found on-line, or in some health food stores. There were no side effects. Of course, you should check with your doctor first!

My first doc tried to put me on Amitryptaline (an antidepressant and 'anti-psychotic' medication) for the neuropathy. It made me feel so loopy, that I stopped :( I'm glad I was able to find a better alternative, that didn't mess with my head!

kayandok
Posts: 1223
Joined: Jun 2008

how long you had the neuropathy before you began using the B6, 12 and L-Glutamine? I used it, but didn't seem to have any effect. I'm wondering now, if I didn't continue usuing it long enough, or started usuing it after the neuropathy was pretty bad. I am encouraged by your post, to give it another shot. I am headed over to the States for a couple days, so would be a good chance to stock up.

I used lyrica for a few months but it made me loopy, my face got very swollen, eyes weren't dialatng etc. It did however work quite well, however. My feet felt lighter and I had a boost of energy (almost a high). I didn't want to stop and adjusted the dose to see if I could keep using it, but didn't work.

VictoriaSF
Posts: 165
Joined: Dec 2010

i am in SF, so i was wondering if you are flying via SFO
would be nice to meet

mopar
Posts: 1995
Joined: May 2003

I used L-Glutamine (search the internet for much better prices), and B-6 (very inexpensive). Couldn't handle the Neurontin, and it did nothing for me. I did better with the supplements. It was horrible when I first got it, so I know what you're going through, as do many of us here. I hope this helps.

Sending (((HUGS))) and Prayers,
Monika

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Victoria

I was diagnosed w/ Stage IIIc ovarian cancer w/ carcinomatosis in August 2010. The taxol/carboplatin combination was too aggressive for me (had massive tumor die off after the second taxol treatment which caused encephalopathy). After getting off the "chemo train" for 7 weeks, I resumed treatment in January 2011 w/ carboplatin only. I have been using natural medicine to help me to survive the chemotherapy. I have been using high dose ascorbic acid IV treatments twice/week through a local alternative osteopath in the Columbus OH area in addition to various nutritional supplements.

I have had brief periods of neuropathy in my feet and it responds very well to 300 mg alpha lipoic acid (aka. ALA or thioctic acid) taken w/ meals once or twice daily. There were times when I would notice my feet were numb in the middle of the night and I would get up and eat and take the ALA and the numbness went away in about 45 minutes and would still be gone when I woke up. I buy it on the Internet thru the Life Extension Foundation.

My CA-125 is down to 13.2 and I have only had 4 taxol & 4 carboplatin treatments so far. BTW, I am a nurse practitioner specializing in integrative medicine. Living a healthy lifestyle was not enough to protect me from getting diagnosed with cancer but it is helping me to be a survivor.

I feel hopeful that I am a survivor already--just need to have it officially confirmed.

cfont11
Posts: 115
Joined: Mar 2011

I had taxol/carbo lst year, 6 treatments every 3 weeks. last treatment was 11/17. Neuropathy in feet has gotten worse since I had surgery in Jan. (hysterectomy, debulking & ileostomy). I take neurotin, 300 mg. 3 times a day. I have read in other places that ALA helps with neuropathy. How do you know how much to take. Would I take ALA along with the neurotin or in place of it? The neurotin only helps for a short while. Any advice you can give would be greatly appreciated as I am going to have 2 more chemo sessions soon. The taxol/carbo did its job on the cancer but there are microscopic cells left after the surgery. The oncologist wants to use taxol/carbo again but with a lower dose of taxol. I am afraid it will make the neuropathy worse.

Chris

Havehope2
Posts: 22
Joined: Mar 2011

I took 1000mg/day L-glutamate and 100mg Vit B6 except chemo days and I had no neuropathy with Taxol back in 2009 (bc). My new onc said I can take them now too with Ciplatin/Taxol. Ask your onc if it is ok to take them.

JMSheeder
Posts: 9
Joined: Jan 2011

Greetings ladies,

I have just finished cycle 3 and have been battling this beast as well. My doctor gave me a list of supplements to try. There are four different supplements and if you find one does not work discontinue and start the next one on the list. I did not have success with BComplex and just switched over to L-Carnitine four days ago and so far I have not felt any symptoms. Hopefully this informaton can help you.

B Complex 1tablet 1-2 times daily

L - Carnitine 1000-2000mg two times daily

Alpha Lipoic Acid 600-1200mg daily

Gluamine 15 GMS twice daily for at least 5 days around chemotherapy

Best of luck and hugs,

Jaime

VictoriaSF
Posts: 165
Joined: Dec 2010

thank you for all your suggestion,
it's been almost 2 weeks since i started taking turmeric and it helps i think.
my onco dr told me it is ok to take it, only not the day of the chemo.
i also take b6/D/magnesium - all approved to take by my dr.

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