Neuropathy Study

[Joe]

Participate in an NIH funded study for Neuropathic Pain

WHAT IS THE STUDY?

The study is testing Websites about self-managing neuropathic pain.


WHY PARTICIPATE?

· You may or may not experience reduced pain and increased physical functioning.
· You may learn more about neuropathic pain.


CONTACT US FOR MORE INFORMATION

www.inflexxion.com/researchstudies

Neuropathic Pain Study Coordinator

neuropathicpain@inflexxion.com

1-800-848-3895, extension 245

Participants may receive up to $175 for completing all study requirements



STUDY INFORMATION


Regards
Joe

[tricia keegan]

Thanks Joe,

I suffered with neuropathy during treatments but hated the drugs I took to help which had some bad side effects.

I now find myself five years on suffering with sciatica, neuralga and general nerve pain which I wonder is related to in any way to my treatment as I had no problems before diagnosis and will check this out.

[sarah]

Hello Tricia,
I had a lot of pain in my shoulder that turned out to have been caused by a pinched or burnt nerve due to radiation. I was given a drug called Lyrica that is sometimes suggested for people with myalgia. I started with 75mg in the morning and 75mg in the evening. I had immediate relief. Now I just take a pill at night and not every night. It does make you a little sleepy.
Maybe ask your doctor about Lyrica.
good luck
health and happiness
sarah

[islandgirl]

Hi there: I had bad neuropathy during chemo (taxol). I tried glutamine (a supplement) with some positive results, but then it got quite bad and I resorted to other drugs. This included gabapentem (spelling?) and Lyrica. While I got relief from these drugs, I was concerned about the side effects (sleepiness, foggy head, and extreme weight gain), so I am no longer using them. I have gone to a naturapath and some of their supplements have helped. I am almost done with Herceptin tx and oddly a few weeks ago my foot neuropathy came back with a vengeance. I worry this will be ongoing, as it's my understanding nerve damage is quirky and sometimes irreversible. Thanks.

[agaperus]

I've dealt with mild neuropathy for years due to diabetes, and recently much more severe due to chemo. I have in my research found that alpha lipoic acid will protect nerves and have had some reports of reversing neuropathy. It also is being studied in prevention of breast cancer! go figure! I have not tried it, but am looking into it. I'm not wanting to start on Lyrica just yet. The alpha lipoic acid has no side effects.
Blessings and good care to you all.

[islandgirl]

Thanks for your post regarding neuropathy. I hadn't heard of the alpha lipoic acid supplement and shall ask my naturopath about it. I continue to have nerve issues in my feet, though am finally (gasp!) done with Herceptin. I have also started the process of breast reconstruction (implants) and am loving this one semi-positive aspect of the whole breast cancer experience. I just ordered a non-mastectomy swimsuit and am excited about having cleavage! Thanks.

[agaperus]

hahaha; you gave me the giggles. I too look forward to having cleavage again. right now I'm wearing yoga tops with built in bras; they help the bandages stay in place, but are not so attractive on this lumpy body. Just more reason to exercise.

Perhaps you could remove the ad for your study since your study is full.

[DancerDonna]

I have neuropathy in my toes caused by taxol I took during chemo in 2005. I wear 6 to 8 pr. of socks at home because layers are the only thing I've ever found to help. Even in the summer, I wear 3 pr. of socks with UGG boots out. I take 300 mg of Lyrica and have taken Neurontin (gabapentin) before; I do not think either have helped the toes. I take lyrica to help prevent headaches I've had since a car accident in 1983.

The neuropathy is a cold, painful sensation. It is difficult to sleep at times, even with this many layers. Lately, there are times that it is the whole foot, instead of only the toes. My neurologist gave me a test a couple of years ago that showed severe damage to the nerves below my knees. I finished the chemo in Dec. 2005.

[agaperus]

Hi Donna;
I'm so sorry you have to deal with this. have you tried alpha lipoic acid? I have heard that it can help and that it also in some cases reversed the neuropathy. Since it's an antioxidant supplement, you should be able to take it along with the Lyrica and should have no interreactions to worry about but i do suggest you talk to your doctor first. The little bit of research i've done on it shows that 600 mg should be the maximum dose per day as the body cannot absorb more than that and it would be wasted. Good luck to you and hope you get relief soon.
kathy

[KDR]

I started having a "light" case of this, and my doctor put me on 50 mg. Vitamin B6 daily. After two days, I noticed an improvement.
Karen

[KDR]

I started having a "light" case of this, and my doctor put me on 50 mg. Vitamin B6 daily. After two days, I noticed an improvement.
Karen

[islandgirl]

Dear Karen: Thanks for responding to my neuropathy concerns. I shall look in to the B6 supplement. I'm sure it can't hurt! Hope you're doing well.

Jude - islandgirl

[Estelle]

Hi Karen,
I am interested in finding out more about the B6. I have taxol induced neuropathy that started the day I started taxol, and persist to this day, about a year after completing taxol. I was told to take a B complex pill, that has about 6 mg of B-6 and the label says that is about 250% of the regular daily requirement. So that means that 50 mgs of B-6 would really be a megadose. I am ready to try that, but wanted to make sure I got the dossing amount correct -- do you take it all at once, or twice of 3x a day? Any info is greatly appreciated. By the way, I am doing the "study" -- so far just consist of reading various information about a lot of different types of pain. I am disappointed because I thought it might teach biofeedback or some other non-drug means to get at least some relief. It also affects my entire foot and sometimes creeps up the leg, as well as my fingers.

Estelle
DX 12-08, Gr 3 St 3; HER2+++, ER/PR-
lympectomy; 10 + nodes
AC then taxol and Tykerb started 7/09
Tykerb gave me severe dehydration, discontinued, 9/09
Completed taxol and a Full year of herceptin - completed 7/10
Bilateral mastectomy - 10/09
Radiation 11/09-12/09

[KDR]

Hello,
I am taking 50 mg. B6 for symptoms daily. I have noticed a very nice improvement, but I have had only 10 Taxol infusions thus far. I won't take anything without consulting with my oncologist, though.
Best

[Estelle]

Thanks, Karen
I too check with my doc, and will go back with this info. They seemed unclear on the amount when I asked. Hopefully they will ok it. Thanks again.
Estelle

[KDR]

Estelle,
You know every case is different. So, go with your trusted oncologist...she what he/she says. I can tell you that it worked for me. I am on my 12th Taxol. Quite a bit earlier than some others here.