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managing periphal neuropathy side effects- Dana Farber supplementation for multiple myeloma

manage chemotherapy induced pn

Article Type: Side Effects
Author: Dana Farber
Source: Dana Farber web site
Source Type: web site

DANA-FARBER CANCER INSTITUTE

THE JEROME LIPPER MULTIPLE MYELOMA CENTER

Institutional approach for Neuropathy with Multiple Myeloma patients

NEUROPATHY TREATMENTS

Always consult with your physician before taking any

supplements or medications

VITAMINS – Always take with food

Hi –DOSE MULTI-B COMPLEX VITAMINS

with B1, B6, B12, folic acid and other B-vitamins

Folic acid should be 1 to 2 mg

VITAMIN E

400 IU daily

FISH OILS - OMEGA-3 FATTY ACIDS (EPA and DHA)

EVENING PRIMROSE OIL Capsules

FLAX SEED OIL

AMINO ACIDS – can be obtained at Health Food Stores

or some supermarkets. Take both if possible.

Take 1 to 2 hours before or after meals

ACETYL L- CARNITINE

500mg twice a day with food

Can take up to 2000mg a day.

ALPHA-LIPOIC ACID

200mg to 1000mg a day with food

COMBINATION PILL - take ONE twice a day

Alpha lipoic acid 200mg

Acetyl-L-Carnitine 500mg

For Cramping

MAGNESIUM

250mg twice a day

May cause diarrhea in large doses

POTASSIUM

2 teaspoons Apple Cider Vinegar

Bananas, Oranges

TONIC WATER (has Quinine in it)

Drink one glass in evening and any other time cramping occurs

Alleviating Side Effects

Q: I am a multiple myeloma patient and have peripheral neuropathy as a result of both the myeloma and chemotherapy. I have been told that B vitamins may help with both my current symptoms and with any future chemotherapy. What dose of these vitamins is safe? Are there other nutritional supplements that can help?

J.M.
Richmond, Calif.

A: Peripheral neuropathy, a side effect of certain chemotherapy drugs, is a condition that causes numbness and tingling in your hands and feet. The exact mechanism of this chemotherapy-induced neuropathy is unknown. Supplementation may help alleviate symptoms of neuropathy.

Vitamin B6 is known to help diabetic neuropathy and may help manage chemotherapy-induced neuropathy symptoms when taken in a safe dose. Taking 50 to 100 mg of B6 daily is safe and may be effective. If you are taking a multivitamin and/or B Complex, check the amount of B6, so that you do not go above 100 mg total per day.

Glutamine has been suggested to help chemotherapy-induced neuropathy, especially from Taxol. Taking 30g/day, as 15 grams twice daily, of Pure L-Glutamine Powder is considered safe for cancer patients. Try to find a powder without other "fillers" in the ingredient list.

Alpha-Lipoic-Acid (ALA) seems to reduce symptoms of peripheral neuropathy in diabetic patients, and may help with symptoms of chemotherapy-induced neuropathy. Taking 300 mg twice daily or 600 mg daily is considered a safe dose. Symptom improvement is seen within 3-5 weeks. ALA is an antioxidant, and when used in combination with radiation treatment, it may reduce effectiveness of the cancer therapy. ALA can be used for up to 4 weeks safely. For long-term use, please speak with your physician and dietitian.

An alterative therapy to oral supplementation is acupuncture. Emerging evidence supports acupuncture as effective in reducing chronic pain associated with cancer.

When considering supplementation, it is important to meet with a Registered Dietitian for an individualized dietary supplement plan.

I have been very lucky to never have had ANY PN, despite having used thalidomide,Velcade, and Revlimid.  I cannot explain why, but I believe it just has to do with  my actually specific neural physiology, which may also explain why thal put me in the mental hospital.

There was a small study, without double-blinded controls, that showed that vitamin E can actually help with PN in some diseases.  It was not tested with cancer, as some oncologists do not think vitamins are good with cancer, which is not what research actually shows.

The Dana Farber regime is good but does not go far enough.

There was an inhouse study at Millennium P., the makers of Velcade, that showed the Alpha-Lipoic acid at 600 mg per day can be very helpful, at least with PN derived from Velcade.

As far as vitamin E, it is best to take it with zinc and selenium, or it will  not be as effective. Also vitamin E means more than one thing, and most off the shelf lacks something called tocotrienols, which you might have to buy separately. I am not sure if this specific element of vitamin E helps against PN or not.

B Vitamins are best taken as some kind of lozenges, which someone named Beverly used to post about quite often on the Acor list.  Apparently some M.D. wrote a book about this in the 90s.

I would also suggest that for anyone who uses the Dana Farber list, do some thorough research on taking whatever they suggest in the most effective way, which is where their advice fall short.

Either Cymbalta or Lyrica..I forget which..is an anti-depressant that can also help with PN.

Finally, the late cofounder of my local mm group found only one thing that ever helped with his PN.  Please keep in mind this was a man in his 70s and not particularly liberal.He found that a "hit from a bong" actually helped him quite a bit, and he limited this to once in a rare while.  In California, this is perfectly legal, since he actually had a medical prescription.  He never talked about this at any support meeting, since he told me he did not like to broadcast it.  Also, he said he hated to go to the places that actually can legally dispense of this, as he said it was full of young men that seemed not really to have a medical reason to be there.  I am NOT advocating the use of illegal substances, but this is in fact legal in CA for exactly this reason.  Please note: despite having several roommates actually addicted to this (yes, you can become addicted), I have never used this nor any other illegal drug in my life (Perhaps thal from England would be consided the single exception.)

 

Alex Maas

a.maas@cox,.net

 

 

 

 

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