Clinical trial/Phase 1 and problems

Linn1

Hi-
I'm participating in a Phase 1 clinical trial at University of
Chicago. My cancer returned May/09.
The combination of the two drugs has left me with horrible neuropathy and spasms and restless leg syyndrome. I am walking approx. 3-4 hours at night because my legs will not stop moving. I had this after my first surgery and chemo but not as bad.

My neurontin and elavil have been increased.

I'm exhausted and afraid I wil fall. I'm getting bruised from bumping into furniture while pacing the house. I've tried BenGay, acupuncture, heating pad, whirlpool tub. Nothing makes a difference.

Anyone with a magic cure for this issue?
THanks for listening.

Lisa13Q

Words of Support
Hi Linn, I'm on line and wanted to let you know there is someone on line here with you; and you are not alone. I am a loved one of someone with this dreaded disease so cannot relate to your physical situation, but wanted to reach out. I am sorry you are struggling so much and hope your doctor can recommend something to help diminish the discomfort. I am sure there will be many posts from women who have had these difficulties and they will have some great advice. In the mean time, I will pray that your side effects get better. I am holding your hand in my thoughts. Lisa

Cindy54

Your Restlessness
Linn, we share the neuropathy, spasms and restless legs though mine is not from chemo or cancer. Mine is from back surgery. There are many nights and days when my legs just will not quit. But it is not a constant thing for me. Neurontin did not do much for me either. We also share the bruising as I take Naproxen. I am also not the best balanced person, so I fumble over my feet and into things. I wish we did not have this in common.When my legs get like this, I also pace to try and tire them out, but I know of no magic cure. Sometimes if I walk enough and stretch enough and bounce around to some music, they calm down.I used to walk in a pool and that did seem to help me.

I am hoping this is just something temporary with the trial you are in. Hugs, Cindy

BonnieR

L-Glutamine
Hi Linn, I imagine you well have lots of responses, as so many of us suffer from this. I have this on going but it has really flared up on the Abraxane. I went back on the L-Glutamine and it does help, most women take vitamin b with it but my body does not like the extra vitamin B but think I get enough of it in my multi vitamin. For me heat aggravates it ~ so I avoid hot tubs and the such ~ and cool down helps so when it is driving me the craziest I walk on the cool tile and hurry back to bed or I finally take an ativan to help me go to sleep and then I can sleep through it most of the night.

Maybe one day they'll find a way to give us something pre chemo to prevent this side affect. Hugs Bonnie

saundra

Dear Linn
Have you started L-glutamin and Vit. B-6? I take these while on chemo and had very little problems. Started them today since I start Doxil tomorrow. I also read a post yesterday that mentioned 1500 mg of Lipoic acid and 3000 mg of Biotin for neurapathy by a nutritionist. You might check this out. Saundra

Linn1

saundra said:

Dear Linn
Have you started L-glutamin and Vit. B-6? I take these while on chemo and had very little problems. Started them today since I start Doxil tomorrow. I also read a post yesterday that mentioned 1500 mg of Lipoic acid and 3000 mg of Biotin for neurapathy by a nutritionist. You might check this out. Saundra

Clinical trial and problems
Thank you ladies for your suggestions, unfortunately, with the clinical trial comes lots of rules and regulations. I am only allowed a small amount of vit B and have not been approved yet for the L-Glutamin. I meet with the team again this week and will ask. It is their opinion, that I should not be having any neuropathy side effects, since others in the study have not mentioned that issue. Don't you love it...researchers telling us what side effects we should or should not feel!!! They screen just about everything on my body so they know what I put in and out - I really won't know if this has been worth my while until mid-Sept. when I get some test results.
Hang in there everyone.

kwar

Hi Linn1, While I am not sure as to treating neuropathy - I do know for restless leg syndrome - there is the fatastic wonder medication out there - Requip. My mother has always had a minor case of restless legs as I do also (what a terrible feeling), but almost immediately after her first debulk surgery - it came on strong. She had known about Requip prior, but her degree of symptoms did not warrant it, now she has been taking it since surgery - and her symptoms are gone entirely. Your primary care or oncologist can prescribe. Best of luck - hope you feel better.

Unknown

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