Newbie...CIPN
 

Hi..I am new to this forum and am seeking some info...I was on chemo for 9 months and developed CIPN. My ONC said it would go away but it has actually gotten worse. It's been over 6 months. I've tried to Neurontin, cream and pills and other remedies. Temp fixes. My feet hurt so bad sometimes I don't feel like getting out of bed. Any help? Also seeing a neurologist next week

Welcome to NeuroTalk:

We have many people coming here with chemo induced PN.

Here is a recent thread with information you may be able to use.
Since only 6months have gone by, you can still try acetyl carnitine. It would have been better perhaps if you had done it during the treatments...but I'd try it now anyway.

http://neurotalk.psychcentral.com/post867845-3.html

Chemo damages the mitochondria in cells and also DNA. So the two mainstays of supplements are acetyl carnitine and CoQ-10.
You can also add in R-lipoic acid stablized (a special form) 100mg a day.

CoQ-10 can be pricey and water soluble is best. Water soluble at about 100mg a day. If you use the older gel cap with oil 300mg a day would be a starting dose.
This is an example of the new R-lipoic acid...it is a vast improvement over the old alpha lipoic.
http://www.iherb.com/Doctor-s-Best-B...-Veggie-Caps/4
(Doctor's Best products are also at Amazon now, at discounted prices).

Welcome. I hope you find a doctor that understands supplements and how they help us heal. There is a lot of great information here about supplements. I have had great improvement with them, like Mrs D talked about and many more.

Hello benzgirl
 

Welcome to Neuro Talk. You found a very good site. There should be some good information, and alot of compassion. so sorry you have had to experience Chemo, then a neruologial problem on top of it. Please keep a pain journal to show your new neruologist next week. That is definately going in the right direction to get some help. There are a variety of medications he can try. Also, if he doesn't specialize in your particular neruological problem, find a doctor who does. I really hope you find the pain relief that you need. I will be here for you any time you need to talk. Glad you found NT. I came here several years ago, and just never wanted to leave. You will make some friends here too. Take care, ginnie

Cipn
 

There is a totally non-invasive therapy called Scrambler Therapy which has had excellent results for CIPN. It uses external electrodes to put a "no pain" signal to the impacted nerve areas. It is non-surgical, non-pharmacologic. Not sure where in the country you are. Dr. Tom Smith, Director of Palliative Medicine at Johns Hopkins did the study where the average pain relief was 69%. There are additional studies on the way, including one out of the Mayo Clinic, where an abstract of the data indicates their results for CIPN were similar to Dr. Smiths. *edit* Let me know if you need more information.