treating neuropathy......

KierstenRx
KierstenRx Member Posts: 249
edited March 2014 in Colorectal Cancer #1
Hi all,
Just wanted to share some interesting info with all you suffering from neuropathy. I am on my 4th of 8 chemo treatments (folfox and avastin). Have been having neuropathy and major cold sensitivity in my hands since first treatment. Has been getting worse and lasting longer with each treatment. Talked to onc and he was going to add neurontin. Told him I am not taking any more drugs. Anyway here is where it gets interesting........
I work with another pharmacist and was discussing my issues with her. She also has a compounding pharmacy. She started doing some research and found a cream formula to treat diabetic neuropathy. She thought it may help in my case. She talked to my oncologist at length and he had never hear of such a thing, but gave the ok for me to try (this cream also has neurontin as one of the ingredients). I tried the cream. You use it on your fingers and place a small amount on a corresponding area of your spine. Within 1 hour of using it, I could reach into the freezer. My tingling has probably decreased by 80%. I use the cream up to 3 times a day as needed. I so far have been amazed with the results. I am curious to see how I do right after infusion (when it is the worst) this coming week. I will keep you all posted. If this continues to work like it does. I am going to take this to the doctors at my cancer clinic. I think about how many people this could potentially help.

Kiersten

Comments

  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #2
    Sounds promising. Let us know. I'd certainly be interested in it for my husband if it helps. Thanks.
  • alta29
    alta29 Member Posts: 435 Member
    #3
    what the name of it >>??
    thanks
  • spongebob
    spongebob Member Posts: 2,565 Member
    #4
    Kiersten -

    WOW! Have you maybe come upon a great treatment for one of the worst side effects of chemo? That's amazing news!

    - SpongeBob
  • KierstenRx
    KierstenRx Member Posts: 249
    #5
    alta29 said:

    what the name of it >>??
    thanks

    The cream doesn't have a "name" that I know of. It's a combination of neurontin, a blood pressure medicine, and anti-inflammatories. It's a very small percent of each drug. I'm not sure exactly what the formula is, but it definitely requires a prescription. A compounding pharmacy would have to make it.
  • cahalstead
    cahalstead Member Posts: 118
    #6
    Oh, Kiersten, how I wish your find were available in the US. I just returned home from my 3rd round of chemo and the neuropathy is very, very uncomfotable. Amazing how it kicks in so quickly! I'm like you, it does let up in about 3 days but it is very uncomfortable until then.

    Enjoy your new "find" just wish it was available for testing everywhere.

    Thanks for the info.
  • KierstenRx
    KierstenRx Member Posts: 249
    #7
    cahalstead said:

    Oh, Kiersten, how I wish your find were available in the US. I just returned home from my 3rd round of chemo and the neuropathy is very, very uncomfotable. Amazing how it kicks in so quickly! I'm like you, it does let up in about 3 days but it is very uncomfortable until then.

    Enjoy your new "find" just wish it was available for testing everywhere.

    Thanks for the info.

    I live in Tennessee. The ingredients are all FDA approved prescription drugs. Find a compounding pharmacy in your area and see if they can make a cream up for diabetic neuropathy. I can't give out the formula to make it due to pharmacy liability, but I am definitely going to start spreading the word, especially if it continues to work. I have chemo on Wednesday, so I will let you know next weekend if it did make a difference. I am keeping my fingers crossed that it will.

    Kiersten
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #8
    KierstenRx said:

    I live in Tennessee. The ingredients are all FDA approved prescription drugs. Find a compounding pharmacy in your area and see if they can make a cream up for diabetic neuropathy. I can't give out the formula to make it due to pharmacy liability, but I am definitely going to start spreading the word, especially if it continues to work. I have chemo on Wednesday, so I will let you know next weekend if it did make a difference. I am keeping my fingers crossed that it will.

    Kiersten

    (will you be joining us @ the Hilton downtown for the Palooza? HOPE SO!!)

    Hugs,
    Stacy
  • scouty
    scouty Member Posts: 1,965 Member
    #9
    You can find a compounding pharmacists in your yellow pages.....look for compounding or words like specialty or any other unique words that you don't see under the major chains' ads.

    I have been off of chemo (folfox w/avastin for 8 months for 2 1/2 years and am sorry to say I have some permanent nerve damage from the neuropathy. My feet get cold very easily and have a tendency to cramp for no reason (even while getting plenty of potassium). My hands are much better but will also cramp every so often and get cold very easily. Or I should say they used to. I have found a herbalogist close to where I live that makes an oil for pain that she also gives to diabetic patients for their neuropathy. I now rub it on my hands and feet every few days and I can't begin to tell you how much it has helped me. The nicest thing is, the product is all natural with no side effects like man-made drugs might give you.

    Kiersten, where is Tenn. are you? I used to live in Memphis and I agree with Stacy that you should come to Nashville in September!!!!

    Lisa P. who doesn't have to sleep with socks on anymore, even when it's cold.
  • Limey
    Limey Member Posts: 446 Member
    #10
    scouty said:

    You can find a compounding pharmacists in your yellow pages.....look for compounding or words like specialty or any other unique words that you don't see under the major chains' ads.

    I have been off of chemo (folfox w/avastin for 8 months for 2 1/2 years and am sorry to say I have some permanent nerve damage from the neuropathy. My feet get cold very easily and have a tendency to cramp for no reason (even while getting plenty of potassium). My hands are much better but will also cramp every so often and get cold very easily. Or I should say they used to. I have found a herbalogist close to where I live that makes an oil for pain that she also gives to diabetic patients for their neuropathy. I now rub it on my hands and feet every few days and I can't begin to tell you how much it has helped me. The nicest thing is, the product is all natural with no side effects like man-made drugs might give you.

    Kiersten, where is Tenn. are you? I used to live in Memphis and I agree with Stacy that you should come to Nashville in September!!!!

    Lisa P. who doesn't have to sleep with socks on anymore, even when it's cold.

    Scouty, i could use some natural pain relief for my hands and feet right about now. do you know what it is your herbalistmixed up?
  • KathiM
    KathiM Member Posts: 8,028 Member
    #11
    Kiersten,

    Wow! PLEASE keep us posted! I'm far enough out that my chemo brain lets me forget how bad it was, but I have a number of 'patient partners' that are/will be going thru the same thing.

    Thanks for the wonderful news! MY onc graduated from the minimalist school of medicine...she treated my nausea with ginger...sounds wierd, but it worked...ginger ale, candied ginger...no sides from the steroids my friend got...

    Hugs, Kathi
  • kmygil
    kmygil Member Posts: 876 Member
    #12
    Oh please, please, please, can I have the formula? I would LOVE to find something to stop this neuropathy. It seems to have settled in although my last treatment was 2 months ago. Sometimes it's like walking on broken glass, so I am really eager for some relief. I never thought of a compounding pharmacist, so I will go have a look online. Thanks for the suggestions!
  • vinny3
    vinny3 Member Posts: 928 Member
    #13
    If possible it would be helpful just to find out what the other ingredients are besides the Neurontin. That way if others find a compounding pharmacist then they could possibly come close to finding a combination that would be helpful to the others. Scouty's oil also sounds like something useful to try.

    ****
  • scouty
    scouty Member Posts: 1,965 Member
    #14
    Limey said:

    Scouty, i could use some natural pain relief for my hands and feet right about now. do you know what it is your herbalistmixed up?

    Yes I do Mark,

    She makes a cream and an oil from: infused oils of calendula, red clover, white willow bark, nettle, rosehip, arnica, skullcap, chaparral, elder flower, st. johns wort, essential oils of lemongrass, camphor, clove, clary sage, basil, pennyroyal, cayenne, wintergreen, vitamin A&E, margoram, sassafras. It's a long list. You can check your yellow pages and see if you can find a local herbalogist or if you're interested I can send you her email address and/or phone number to you email here. She ships products to others and to several doctors. She learned the trade from her grandfather and has a degree from one of the alternative medicine colleges (can't remember her name). She grows most of her products herself. I get several products from her as do my brothers and sisters. If anyone else is interested, let me know. She is starting a web site but really isn't interested in going big time yet.

    Can't wait to hug your neck in Nastyville!!!!!!

    Lisa P.
  • KierstenRx
    KierstenRx Member Posts: 249
    #15
    StacyGleaso said:

    (will you be joining us @ the Hilton downtown for the Palooza? HOPE SO!!)

    Hugs,
    Stacy

    Stacy,
    Not sure if I can make it to the Palooza. Have absolutely no time off left at work. I am going to at least try and come for one of the days. May not be able to spend the night. Will know more later on....

    Kiersten
  • KierstenRx
    KierstenRx Member Posts: 249
    #16
    scouty said:

    You can find a compounding pharmacists in your yellow pages.....look for compounding or words like specialty or any other unique words that you don't see under the major chains' ads.

    I have been off of chemo (folfox w/avastin for 8 months for 2 1/2 years and am sorry to say I have some permanent nerve damage from the neuropathy. My feet get cold very easily and have a tendency to cramp for no reason (even while getting plenty of potassium). My hands are much better but will also cramp every so often and get cold very easily. Or I should say they used to. I have found a herbalogist close to where I live that makes an oil for pain that she also gives to diabetic patients for their neuropathy. I now rub it on my hands and feet every few days and I can't begin to tell you how much it has helped me. The nicest thing is, the product is all natural with no side effects like man-made drugs might give you.

    Kiersten, where is Tenn. are you? I used to live in Memphis and I agree with Stacy that you should come to Nashville in September!!!!

    Lisa P. who doesn't have to sleep with socks on anymore, even when it's cold.

    Sounds like that oil is definitely helping you. I keep looking for ways to make this time more tolerable. The neuropathy probably is the thing that gets on my nerves the worst.
    Anyway, I live just outside the Memphis area. Lived in Nashville for a short while also. Love this state... :)
  • KierstenRx
    KierstenRx Member Posts: 249
    #17
    vinny3 said:

    If possible it would be helpful just to find out what the other ingredients are besides the Neurontin. That way if others find a compounding pharmacist then they could possibly come close to finding a combination that would be helpful to the others. Scouty's oil also sounds like something useful to try.

    ****

    ****,
    I talked to my fellow pharmacist and she said it is a combination of neurontin, clonidine, ketamine, and ketoprofen. You place the cream on corresponding areas on your spine to where you are having the neuropathy, massage it in for one minute, then I use it also on my fingertips. I can use it up to three times daily as needed. She has me on a lower dose than her diabetic neuropathy patients, but said I could increase the dose if needed. I have my 5th chemo treatment tomorrow so I will let you know how it does.....
  • cecek
    cecek Member Posts: 1
    #18
    scouty said:

    You can find a compounding pharmacists in your yellow pages.....look for compounding or words like specialty or any other unique words that you don't see under the major chains' ads.

    I have been off of chemo (folfox w/avastin for 8 months for 2 1/2 years and am sorry to say I have some permanent nerve damage from the neuropathy. My feet get cold very easily and have a tendency to cramp for no reason (even while getting plenty of potassium). My hands are much better but will also cramp every so often and get cold very easily. Or I should say they used to. I have found a herbalogist close to where I live that makes an oil for pain that she also gives to diabetic patients for their neuropathy. I now rub it on my hands and feet every few days and I can't begin to tell you how much it has helped me. The nicest thing is, the product is all natural with no side effects like man-made drugs might give you.

    Kiersten, where is Tenn. are you? I used to live in Memphis and I agree with Stacy that you should come to Nashville in September!!!!

    Lisa P. who doesn't have to sleep with socks on anymore, even when it's cold.

    So please tell us what this oil is?? My husband has a little neuropathy in his feet (not hands or mouth) since completing his chemo about 4 weeks ago. I love the idea of using a natural product. He has swallowed enough pills to last a lifetime, lol.

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