Chart showing types of Chemo Nerve Damage
 

For CIPNers,

Here is an easy to under pictorial of how different types of chemo attacks different parts of the nerve pathway ( as much as they know), that may be useful to some:

http://www.integrativeoncology-essen...mo-neuropathy/

For those of us on taxanes, or combination therapies, it impacts about every aspect of the pathway.

I had a few different top oncologists, and I found it discouraging when they all starting asking me questions like "how is Diabetic PN different from Chemo PN?" and to send them studies and info I come across to help them learn.

Natalie

This would be really helpful on the Subforum above, in the
Medications that cause PN thread.

Do you mind if I copy it to there?

or you could and that would preserve your "by-line"..

http://neurotalk.psychcentral.com/thread122889.html

A very good site. I had seen it before. Lots of information on there.

Thank you.

Very good info on relaxation and it's benefits.

I've used a tens machine very successfully in self treating. I use it on pulse to pump blood into my lower legs to relieve muscle cramping and pain. This it has done pretty well. I went from terrible foot and calf cramping at night to barely any.

It works well for pain and I get a window after using it of up to several hours of pain relief to specific areas.

Hi Natalie,

Great site...thanks!
I don't have chemo induced neuropathy but have breast cancer and just finished radiation treatments....I have pretty severe neuropathy from a previous Lyme Disease infection and all my treatments have made it worse. I posted on the chronic pain forum about Golden Milk and I really think it is helping me. Turmeric is the main antiinflammatory agent in the milk and it is mentioned in the link.

Thanks again for sharing this very informative site.
I wish you well.
D.

Sure ... whatever helps.

Not sure if you want to move the chart or the whole thread there somehow .... go ahead and do it however you want to do it and think is best.

I started some past threads that concentrate on specific topics / tips that I thought should eventually be moved to the "PN tips" folder above.

It seems more people chat and post in the main forum area, and newbies go to the pn tips folder to get their grounding on the basics .... so I wanted to kick ups some conversation / comments on certain threads in the general area and then perhaps later ask the threads that seem good for a specific tip/topic to be moved to the pn tips area.

Do you know how to move your own thread from one the main area to the "PN tips" area?

Am I in line with the philosophy of these areas?

I am currently in a big research phase, so I'll post stuff that I come across that I haven't found when searching on the forum but believe would be useful to others.

Thanks,

Natalie

Isn't milk inflammatory ???
 

Just a quick side note .... I am not an expert but I thought many find dairy inflammatory.

The turmeric is great but I wonder if you might do even better cutting out the milk.

If you want another idea, try Dr. Weil's turmeric tea. If you really want a kick, combine it with ginger, another anti-inflammatory.

http://www.drweil.com/drw/u/ART02833/turmeric-tea

Natalie

It is best if I move things. You can copy your posts, copy/paste from the text box that opens when you hit "quote"..

This preserves the url of any links you have in the post.

If you just copy from the post as it shows on the thread, the links will die and be inactive. This happens commonly to all of us at one time or another. :o
It is best to always test any links in a copied post...because if you do it the wrong way, they will be inactive.

So I will move this information to the Subforum this time.
Thanks.
It is all done now. ;)

great shortlist of supplement options
 

What's amazing about this particular link/page above, is it the first time I have seen someone really pull together a very knowledgeable "do and do not do" list of supplements that one can take specifically for Chemo pn, that stacks up with my own research and I respect (and believe me, I've looked).

I've read lots of studies and seen all kinds of different sites that has different bits and pieces, but this is one of the best shortlists that really sums up well where the top supplement options seem to be right now specific to CIPN.

I will have to look at their recommendations and dosages in more detail, but for the most part, it appears at first glance that they have pulled together a pretty solid list of the current top picks.

Frustrating that we have to run around and dig deep to figure these things out on a time-dependent ailment. I personally found the different oncologists, neurologists, primary care doctors next-to-useless. I would have loved to have walked into a health care professional office and heard "well, we can't promise anything but here is a complete program of what you can try and get started on .... "

Perhaps "integrative oncologists" are leading the way. Even though 40% on chemo get cipn, my oncologist bluntly told me "frankly, there hasn't been much interest in this topic in the medical profession".

This makes me so angry to read.... I'll have to cool off and reply later. How can doctors be so blind, I have to wonder?

Thank You Natalie!
 

Hi Natalie,

Thank you for this information. :D
The timing is amazing, as I am needing to consider low-dose chemo. treatment
for an autoimmune condition. In my case, it's proposed an attempt to control inflammation enough to eventually decrease daily prednisone intake. I already have significant PN. (This approach is endorsed by all of my doctors at this time.)

I, too, am enraged/disgusted/saddened to think the medical profession, as a whole, may not be interested in addressing/preventing/assisting with CIPN.:(

Thanks again, Natalie! :D

Warmly,
DejaVu

Sorry, Mrs. D .... didn't mean to get you worked up.

Although, it feels nice to have people out there who care enough to get angry.

I could tell you even more stuff like this but it will just send us all into a rant.

I have learned more from your comments and those on this board on pn than all the health care providers combined.

:)

The list of supplements suggested, are they useful for improving neuropathy? The site only talked about using these to prevent neuropathies.

sometimes for some people, maybe
 

This particular page above list supplements for people who already have pn as a side effect of chemo.

Most of them are even better tested for other types of pn.

Hopefully some of these help some people.

There is no big, obvious, well tested silver bullet.

look at bottom
 

Also, maybe you didn't scroll all the way to the bottom of the page.

The top two listed had been tried in the past during chemo infusion in hopes of prevention.

Then way down at the bottom they list the rest of supplements to later try. It would be better if they listed supplements at the top, all in one place.

BTW, they mention cold packs. I know many people who tried putting cold packs on feet, hands, scalp during infusions and still got strong pn and lost hair ... It's okay to try cold packs but I would tell people not to have great expectations of cold packs.

Another article about chemo damage:
 

I am editing my carnitine entry in the Subforum Supplements thread. And I found this:

http://www.sciencedirect.com/science...13231714000214

Lots of interesting graphics in this article... about toxicity to
neurons.

ALCAR makes CIPN worse ??
 

Big thanks for this. You have been pointing to "oxidative stress" long before I came across studies like this spelling it out.

I am very curious what your edits will say about your thoughts now on carnitine for cipn.

If you remember, in my thread below from last year, I was just about to start carnitine when the medical community was surprised by a large study saying it made cipn worse. Prior I had read a lot about how RLA and ALCAR worked well synergistically, but with this I got spooked and didn't start it.

During this time, I think you were on vacation. Others grumbled about the sponsors of this study and bias.

I've also been reading the new trend in studies is telling people NOT to try things ... apparently, this saves money for insurance companies and decreases competition for drug companies .... you would know more about this.

I still don't know what to make of it, and I still have the ALCAR and RLA unopened bottles calling to me ...

but more and more are referring to this study and ALCAR seems now to be taken up by the medical community as a legit "do not do" for cipn.

Any thoughts appreciated,

Natalie



My forum thread:

Pls Help Discouraged - Large Study says Acetyl-L-Carnitine WORSENS Neuropathy
http://neurotalk.psychcentral.com/thread208875.html


Here is the studies and related editorials:

"Conclusion There was no evidence that ALC affected CIPN at 12 weeks; however, ALC significantly increased CIPN by 24 weeks. This is the first study to our knowledge showing that a nutritional supplement increased CIPN. Patients should be discouraged from using supplements without proven efficacy. "

A Double-Blind, Randomized Phase II Study to Evaluate the Safety and Efficacy of Acetyl-L-Carnitine in the Prevention of Sagopilone-Induced Peripheral Neuropathy
The Oncologist 2013, 18:1190-1191.
full text of study available online:
http://theoncologist.alphamedpress.o...f-50887211d6e5



"Acetyl-L-Carnitine Increases The Risk and Severity Of Taxane Induced Neuropathy:

Contrary to promising results from earlier studies (preclinical and smaller human studies), a large randomized trial found that patients who received acetyl-L-carnitine (3,000 mg per day) during their taxane-based chemotherapy for breast cancer actually developed neuropathy more frequently and had more severe neuropathy compared with those who took a placebo.

The bottom line: Don’t take acetyl-L-carnitine to reduce the risk of taxane-induced neuropathy…it doesn’t work.

This is yet another study that makes the same point as I made above, that we need to be cautious in our adoption of new therapies before they have been proven safe."

http://www.integrativeoncology-essen...mo-neuropathy/




"Acetyl-L-carnitine and prevention of chemotherapy-induced peripheral neuropathy: can anything work?

The current study describes a well-executed, prospective, placebo-controlled, double-blind, randomized trial. ....
Preclinical data with ALC examined the prevention of axonal damage and mitochondrial dysfunction and appeared promising [2], However, together with other studies (Table 1), the current report indicates ALC will not be an effective therapy forchemotherapy-induced PN, and other strategies will need to be pursued. "

The Oncologist (Impact Factor: 4.1). 01/2013; 18(11):1151-2.
free full text available online:
http://theoncologist.alphamedpress.o...5-190ea69fdf06
or also:
https://onchd.alpha.intstrux.com/art...y-can-anything



Other summary of study:
"Chemotherapy: Supplements—for better or worse?"
Nature Reviews Clinical Oncology 10, 426 (2013); published online 18 June 2013; doi:10.1038/nrclinonc.2013.106
Full text available:
http://www.readcube.com/articles/10....inonc.2013.106

go see carnitine expert ??
 

Interesting side note to the carnitine for cipn debate ...

Since I am an American living in Switzerland, turns out that one of the more known research experts on carnitine for nerves, happens to be a reasonable drive away from me in Northern Italy.

He conducted the study listed below, along with others, that most other papers cite when discussing carnitine for cipn.

A year ago, I emailed him, he personally responded and was willing to give me an appointment (a couple of months away) to discuss this topic, to my surprise. (Top opinion leaders will often respond to emails from general public in Europe, which is wonderful). I then got caught up in other health issues.

His research is fairly pro-carnitine and I'm curious what he would now say that the tide is tipping in the opposite direction of his studies.

I believe he would still meet with me, I am not entirely sure all that I would ask him.

Currently, this is not at the top of my list of priorities but if any of you could ask him / discuss anything ... what would you be curious about?

Natalie



... also a search of Bianchi G in pubmed shows all his work with carnitine with different nerve problems.



"Symptomatic and neurophysiological responses of paclitaxel- or cisplatin-induced neuropathy to oral acetyl-L-carnitine.
Bianchi G, Vitali G, Caraceni A, Ravaglia S, Capri G, Cundari S, Zanna C, Gianni L.
Eur J Cancer. 2005 Aug;41(12):1746-50."

The research on nutrients in medical areas, tends to vacillate.

for example the recent alarming news item about carnitine supplements causing heart attacks, was interpreted in a way that was not entirely accurate.

Here is an explanation and rebuttal from Linus Pauling institute:

http://lpi.oregonstate.edu/files/pdf...s13.pdf#page=2

My impression is that the carnitine used in the chemo studies may have been the wrong dose. And selection of the study patients may have somehow skewed the results...this is common with nutrient studies.

Some studies used up to 3 grams a day...and perhaps that is just too much?

So I am on the fence with this for chemo patients. I know carnitine really helps with recovery of muscle after working out, as I used it when I was more active and it worked to prevent stiffness and soreness for me.

Carnitine has been used in the medical community for a long time. For AIDs patients, heart failure, and hyperthyroidism.

I just don't think there is a definitive answer yet.

hippocrates number one rule - do no harm
 

Thanks for your thoughts.

Yes, I feel the same.

I was surprised that despite the years of studies, recent discussions now seem to completely drop ALCAR for cipn and cite last year's study as the new fact without questioning it much.

I find it hard to experiment on my body with things that I will be taking daily for a long time, especially when the threat has been made that the treatment could make things even worse.

I think of Hippocrates "Do no harm" (i.e whatever you do, don't start screwing things up even more).

At the same time, I did have a good feeling about ALCAR w RLA.

Natalie

I think I asked this before but can't find the thread. I stopped taking rla so I don't remember the answer. My new bottle of rla says to take 300-600 mg a day! That seems high..

So what is the name of your new bottle? There are many types of lipoic acid out there now. Yours could be one of 3 types.

Mine is from prairie naturals

I don't believe this is the stabilized form of R lipoic. That means you do need the high doses because it is not absorbed well.
300mg a day is an average dose of this, and should be on an empty stomach.

This is an example of the improved form, which has been modified to be more absorbable.

http://www.amazon.com/Doctors-Best-S.../dp/B000I4C19G

It is the one I use and some others here use also.
You only need one capsule a day of this.

Thanks for clearing that up. I thought r lipoic acid was the stabilized form of alpha lipoic acid. I didn't realize there were two types. That makes sense now.

I find all of this information and reminders so helpful! :D
The questions are important!
The answers are important!
Thanks to everyone!
:grouphug:
DejaVu