Have spent the day reading through this forum and copying/pasting helpful suggestions for later reference. Thanks to all the contributors!!

I'm posting for my husband who is suffering from Chemotherapy Induced Peripheral Neuropathy from 12 rounds of FOLFOX. It is primarily in his hands and seems very similar to Carpal Tunnel. His feet are somewhat numb but manageable. His hands very very painful with much loss of fine motor skills. He has endured some really rough cancer treatments and is, miraculously, cancer-free today (hooray!). Now the severe PN is causing distress worse than any of the treatments.

He has tried a number of drugs RXd by his oncologist and is currently taking Cymbalta which seems to help at night when his pain is worse. He is a big believer in nutrition and supplements so I'm trying to wrap my head around that aspect of PN treatment.

He is a weird case though. He has HNPCC and has had two major surgeries for cancer (duodenal and colorectal) in the last 2.5 years, plus chemo, plus radiation.

The biggest surgery was a Whipple which drastically altered his digestive system. We are learning that this surgery changes how the body absorbs nutrients. He no longer absorbs B12 and is taking weekly injections (cyanocobalamin). He no longer absorbs iron and receives periodic IV iron for anemia (suspect a bit of a bleeding gut from the radiation so he needs his iron topped off periodically). Right now he is not anemic though. He is deficient in selenium and vitamin D so he is taking oral supplements to see if he can absorb those. He takes a liquid multi-vitamin, milk thistle, tumeric, fish oil, B6 and B1, and periodically soaks in Epsom salt for magnesium. He eats TONS of berries and other high antiox foods. He east Activia yogurt and takes a probiotic supplement each day.

Because he had a significant portion of his pancreas removed during the Whipple he takes digestive enzymes. He takes Prilosec to reduce stomach acid to protect the digestive enzymes. My understanding is that lower levels of stomach acid play a part in absorption.

He is also at higher risk for diabetes because of the pancreatic loss and I was interested to learn on this forum that nerve damage can occur in prediabetic conditions. He is going to talk to his doctor about a fasting glucose test to see if that is a contributing factor to the PN.

He recently started taking glutamine to help with the PN. He took 5mg the first week, 10 mg the second week, and is now taking 15 mg this week.

Am I correct that CIPN is a form of drug-induced PN and so we should be looking at mitochondrial aids like acetyl carnitine, CoQ-10 and r-lipoic acidacetyl carnitine, CoQ-10 and r-lipoic acid?

Are there other supplements that would be good to try?

Any other CIPN folks who have found improvement? If so, what do you think helped?

Thanks so much!
Trish

Yes, especially Acetyl carnitine. This has been given to protect against chemo induced PN.

And yes, the Prilosec is preventing absorption of iron, and B12 and other things.

With this added feature...the Whipple's... he may need IV supplements. A special doctor, typically a naturopath or holistic MD will be able to advise you about IV supplementation.

This seems very complex to me, so a complex supplement intervention will be needed. More than for the typical PNer I'd say.

Does the quality of acetyl carnitine vary widely from different sources? Sadly, we didn't learn much about preventing PN prior to chemo because it was all such a rush for surgery. He showed no signs of PN until two weeks after the very last treatment when it hit very hard.

Yes. Plus we've learned that removing the duodenum can prohibit iron absorption and the partial gastrectomy can inhibit B12 absorption. The gallbladder removal has lead to issues with bile reabsorption and he is taking cholestyramine to help with that.

I've wondered about IV supplementation. How does one locate a reputable naturopath or holistic MD?

Yes, it is complex! I'm hoping we can find something that will help lessen his pain in the short term and help his nerves to heal in the long term. I purchased the Biofreeze you mentioned and went ahead and picked up a bottle of Neuragen as well. Hoping one of them will help him get at least one night of decent rest.

Thanks!! Trish

Most quality acetyl carnitines will be safe.

NOW brand, Doctor's best, etc. The quality makers
use GMP manufacturing. NOW and Doctor's best are
less expensive than some others like LEF.

iherb.com offers many brands to check out.

Check your Yellow Pages under physicians and there might
be a listing for holistic MD. Some hospitals also give recommendations.

There are IVs called Meiers Cocktails with various nutrients added. They are made by compounding pharmacies. Be sure to check out those too...some have run into problems with quality. However, many IVs have glutathione added, and this is helpful for PN as well. Dr. Jay Cohen MD has a statement on his site that glutathione IV helped a patient with PN induced by fluoroquinolone antibiotics. Glutathione cannot be used orally.

Here is one article on one chemo type and glutathione:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Cholestyramine will adsorb drugs and nutrients. It has to be used carefully and spaced away from other things.
Taurine has been helpful in people with bile flow problems.
Sluggish bile release may be helped with this supplement, 500 to 1000mg a day.

R-lipoic acid may help with blood sugar utilization, and also with the mito functions.

Your husband has been thru alot!

Alpha Lipoic Acid really helped my husband's PN. His too was drug induced. He used Alpha back in 2003 since R-Lipoic wasn't available then.

If you have a local compounding pharmacy, you can ask them for names of doc in the area. This would give a place to start your search for doc who does IV nutrients.

NAC (N-Acetyl-Cystiene) (sp), is also very good for boosting ones own glutathione.

John also got relief from the Rebuilder. You can do a search on it in this forum and many posts will come up.

Chiropractic adjustments helped tremendously with his gait, balance and even some of the pain.

Now, I do reflexology on his feet using therapeutic grade essential oils. And he gets relief from this. His feet continue to heal. He was at an 8 or 9 on the pain scale. His feet were purple on the top and white on the bottom. He's probably down to a 1 now and the color is pretty much back to normal. Burning sensation is his biggest issue in the summer when his feet get hot.

I'm hoping to learn more about ALA. Please share specifics! I'm still combing through the forum but may have missed that discussion.

My youngest son was borderline autistic when younger and I did a fair amount of supplement research back then (he seemed to thrive with omegas and zinc and therapy -- no longer on the spectrum). There was quite a bit of talk about chelation and autism and I think ALA has chelating properties. Is chelation a concern with PN? I remember it being controversial for austistic kids, but that might be due to a potentially weaker blood brain barrier.

Also, ALA is a high dose antioxidant. I'm still trying to figure out the correct stance on antioxidants and cancer. We stayed away from antiox supplements during treatments and have tried to add antiox rich foods to his post-treatment diet as tolerated. He gets some extra antiox from vitamins but who knows how well that is absorbed. In my husband's case he has a rare genetic mutation that prevents his cells from making a protein needed for cell repair. I see how antiox can hopefully help prevent cell damage, but worry about possibly aiding the cancer at high doses.

He used to take C0Q10 (before the cancers) and it looks like that may be good to add back now.

I'm investigating carnitine. A friend has a family member with a mito disorder and they use huge amounts of carnitine (Carnitor RX) for that. She is not keen on the OTC supplements, but OTC might be fine for PN since it is not quite on the same scale of a disorder.

In reading about CIPN and it sounds like "magnesium and calcium solutions" have been tried as both a preventative and a treatment with some success in clinical trials. Is anyone familiar with these types of solutions? The ones reported are IV and not something one can pick up at the local pharmacy. Are there suitable home approaches? Do doctors ever RX these treatments for PN?

Sorry to have so many questions! I appreciate all the helpful information!!
Trish

The carnitine sold at epic4health.com
is the same as carnitor RX. Sigma Tau manufacturer
http://www.epic4health.com/lcar60cap.html
http://www.sigmatau.com/sxProdRx/products_rx.asp

I used to use this, but I switched over to acetyl form, since it is
better absorbed, and the acetyl has more research behind it.
(the AIDs community has used it for many years now).

I think you'd have to ask the holistic physician about the Ca/Mg IVs... I think I have only seen one patient coming to boards who did get the IVs like the Meier's cocktails.

Thanks for all the great info! I'm reading about Glutathione (and NAC). This is a new one for me. It sounds like it could be very helpful both for the PN and for some of the liver damage incurred during treatments. He takes milk thistle for his liver but it sounds like glutathione would be beneficial as well.

Hi Trish,

John took 300 mg ALA 2x/day. If memory serves me correctly, the studies done in Germany with ALA were at 300 mg 3x/day and higher. They used this to treat diabetic PN.

I think the R-lipoic acid is the new and improved version and allows you go with a lower dose. I don't know exactly what dose that would be but I would think you could cut it in half and start with 150mg 2x/day. Others with experience with will know.

Regarding the antioxidants and cancer issue is not clear at all. When John did his chemo, which was a high dose over 4 days, his doc did not want him to use the NAC during those four days. The reason being is that it can improve the liver detox pathways and mess with level of drug in the body. In some cases, it makes drug more effective and in others, eliminates it quicker and they needed him to have a a lot of the drug in system to make sure it wiped out his bone marrow. Your husband probably has a lot of deficiencies at this point that need to be corrected and there's a lot of oxidative damage that has occurred. This was true for John also.

Sometimes I think they don't want people to use supplements and herb because then they would do other than "assembly line" treatment. They want a certain level of predictability. If they were really concerned about feeding the cancer, they would take tougher stance on the use of sugar. It is proven that cancer loves sugar and thrives when diets are high in sugar.

Hope this helps....M

My son just completed the first round of chemo. Not sure I have the names
correct but FU5Push and oxiaplatin, etc. After reading on line the things people are going through, it sounds like a nightmare. We have been told almost none of this. What do we need to do now? Right now to help ward off these side affects. I am trying to educate myself although I must say God is bigger than any of this. God Bless you all. Thank you for the info.
I would really appreciate any info that I need before he goes again next week for the next dose. Last summer he had FU5Puch for six weeks and radiation, then resection and illiostomy(sp?) and reversal and now four months of every other week with this stuff. I wish you all well.I was just reading bout the study at the veterans hospital with taking the glutamine and it sounded good. Do you ask your doctor before taking any suppliments? Will any of these things you all taking interfere with the effectiveness of the chemo?
I reaaly appreciate all the input as this has been a real learning experience.
He is only 39 years old.