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neuropathy update

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Hi all,
Wanted to give you all an update on the neuropathy cream I have been using. I have been trying to find an effective dosage after infusion of FOLFOX and Avastin. I used the cream before starting my chemo treatment last Wednesday. I didn't have nearly as strong of tingling and cold sensitivity as normal. I would say it cut it down by at least 50%. By day 5 it was about 75% gone, and by day 8 it was almost completly gone. I quit using it on day 9. I just use the cream as needed. I have been really happy with the results. It has made those annoying and painful first 3-4 a lot better for me. I have told my oncologist about the results I am having and he has already prescribed it for another patient.
Anyway for those of you that this may benefit find a compounding pharmacy (yellow pages) in your area and see if they can make it for you. I don't have the formula, but the ingredients are Neurontin, Clonidine, Ketamine, and Ketoprofen. It costs me $60 and should last me at least 2-3 cycles.
I just wanted to share with you something that has worked for me and could potentially help others of you suffering with the cold sensitivity and neuropathy.

Kiersten

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Kiersten,
THis is interesting news. I haven't heard of this before. My neuropathy is not that bad with the oxali this time around, but I'll keep this is mind. I have a compounding pharmacy right across the street from where I work. Thnak you!
Mary

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Thanks for the update, dearheart! I have pasted this info into my 'tips and tricks' file...you have helped VERY many people with your pioneering!

Hugs, Kathi

crg123's picture
crg123
Posts: 80
Joined: Mar 2007

Kiersten.... I'm VERY curious about the cream you are using for your neuropathy. Did you have a prescription for this? Be VERY careful! I am a nurse anesthetist, and at times (select cases) we use Ketamine for anesthesia. It is a "controlled substance", similar to narcotics. It produces a "neuroleptic anesthesia" which is an out of body experience. A similar street drug that was out was PCP. The person receiving this drug can have pain inflicted upon them (such as an incision), but perceives no pain sensation. Their eyes can be open, but they are usually rolling. They have no recall of the episode after the fact. This is a POTENT drug, usually reserved for select cases. Clonidine is a drug used to treat high blood pressure. It is available in "patch form", which means it can be absorbed through the skin. By using these drugs in cream form, you have no control over the dose you are getting. Things could get dangerous!
I can sympathize with you regarding the neuropathy. My FOLFOX had to be discontinued after 9 treatments (I was supposed to have 12), because of severe neuropathy affecting my gait and hand function. This was not going away between treatments. Just don't get yourself into trouble with a substance that could potentially harm you.
Concerned...
A CRNA

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Thank you for your concern with the cream. I am a pharmacist and had the same concerns with the ketamine and clonidine. Both ingredients are used in extremely small amounts. The cream does require a prescription and both myself and the compounding pharmacist that made it talked at length to my oncologist about using it. The compound has been used for years in patients with diabetic neuropathy and when I started chemo my symptoms were the same as her other neuropathy patients(numbness, tingling, burning, pain). She did extensive research and talked with colleagues about using this cream in chemo patients.
Anyway, I have absolutely no side effects you described. The cream is drawn up in a syringe so an exact doseage can be applied each time. Again, the amounts of each drug is a very small percent of the total quantity dispensed. I am offering this as an option to those suffering from neuropathy as I have. In my previous post about the cream I did state it needs a prescription and does require a pharmacist to compound. I would never recommend something like this without having a patient talk at length to their oncologist. I know this isn't an option for everyone, but if used correctly I believe it could SAFELY help a lot of us.

Kiersten

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