Drug for chemo brain

KsGal · 06-28-2012, 06:25 PM

Two days ago I started Cerefolin NAC to help with my chemo brain. Gosh, I hope it helps. Has anyone else had this?

Vicki revised · 06-28-2012, 09:15 PM

Is this a new med and what aspects of chemo brain does it target?

KsGal · 06-28-2012, 11:30 PM

Im not sure how long it has been around. Although its prescription medication, it is basically a large dose of folic acid, B12 and acetylcysteine. It seems it is prescribed to treat early memory loss in patient developing Alzheimer's or vascular dementia, although there are other uses mentioned. I had seen just a few posts when running a search for "chemo brain" or "chemo fog"and the name of the medication where others had tried it, and I wondered if anyone here had given it a shot?

rhondalea · 06-29-2012, 07:35 AM

When you wrote "folic acid", I was sceptical. No one should take folic acid. Too many people have difficulty metabolizing it, and while we end up with a high blood level (because it just keeps circulating), it doesn't do a blessed thing. Methylfolate, on the other hand, is a wonder supplement, so I was glad to find it is the form you're taking.

Still, 2 milligrams of methylfolate is a very high dose (although not even close to what's in Deplin). I was taking 800 *micrograms*/day, and all I did was sleep, so I cut it back to 400. I may increase over time, but I don't ever expect to go over 800.

I do not take any supplements as combinations, because I prefer the freedom of choosing my own doses. For example, I take 600 mg of NAC twice a day (sometimes 3x/day) and 2500 micrograms of B12* (the methyl form) every other day. (I used to take more B12, but my blood level went way over range, so it is clear I don't need megadoses.)

Nonetheless, I suspect you will see good results. All the constituents of Cerefolin NAC are known to improve memory problems, so the three together should be a slam dunk.

Here's a little more information about possible reactions to methylfolate and what to do about them:

http://mthfr.net/methylfolate-side-effects/2012/03/01/

You might also want to look into vinpocetine.

*Edit: I do not take 2500 micrograms of Vitamin B12. I used to take 5 mg of Vitamin B12, but when my blood level went over the 1000 mark, I cut back. A lot. I now take 500 micrograms every other day. Sheesh.

imdavidson · 07-02-2012, 08:13 PM

I'll be curious to hear how the Cerefolin NAC works for you. I know several people who take modafinil (brand name Provigil) for chemo brain and they say it makes a difference. The FDA approved Provigil for sleep apnea so insurance will pay for it only for that diagnosis. Your doctor can still prescribe it though for "chemo brain," but you will need to pay out of pocket. I don't know the cost.

imdavidson · 07-02-2012, 08:19 PM

I'll be curious to hear how the Cerefolin NAC works for you. I know several people who take modafinil (brand name Provigil) for chemo brain and they say it makes a difference. The FDA approved Provigil for sleep apnea so insurance will pay for it only for that diagnosis. Your doctor can still prescribe it though for "chemo brain," but you will need to pay out of pocket. I don't know the cost.

rhondalea · 07-02-2012, 08:59 PM

I would love to try modafinil, but I'm a Val158Met Met/Met homozygote, so it won't work for me. (But my particular mutation represents only 24% of the population, so for most, it's a useful drug.)

The average estimate for a month's worth of modafinil without insurance is $300+.

KsGal · 07-03-2012, 04:14 PM

Have not noticed anything yet, positive or negative. I'd really like to stop saying things like "oh, you know, that one guy? on that one show? the guy with the hair?" or "I left my (keys/debit card/wallet/purse) right here on the table. Who moved it?" Idk..Im hopeful, but not overly so. Going to give it a few weeks.

CoolBreeze · 07-03-2012, 05:50 PM

Want.

I'm starting to lose words. I forget everything - even forgot to go to chemo last week because I didn't know what day it was. Would love to hear how this works. Can you give yourself a little test? Maybe try to remember some things and write down how much you could, and then after on the drug for a few weeks, see if you improve?

Would love to know if it works. I have it something terrible after 2 1/2 years on chemo.

rhondalea · 07-03-2012, 07:01 PM

KsGal,

My only suggestion is that you give it at least a few *months.* (Okay, one more suggestion: ask for a thyroid panel. Not just a TSH test, but the entire panel. If your thyroid is wonky, it won't matter what else you do until you get it fixed.)

Healing takes time. Sometimes it takes a lot of time. We can use supplements as a shortcut (I take 30+ a day), but even then, the brain cannot heal itself overnight.

I had about resigned myself to gibbering idiocy for the rest of my days when just a few days ago, I noticed that my memory was improving, that I was comprehending more than half the words I was reading, that I was getting more done in less time, that I no longer lost quite so many easy words at the very tip of my tongue. I still have a few issues, but I'm now hopeful that the glow at the end of the tunnel is daylight instead of an oncoming train.

Several months ago when I was bemoaning the loss of my mind, one of the very wise women in this group wrote to me, "Don't be too hard on yourself." It's good advice. You'll get there.

Andrea Barnett Budin · 07-05-2012, 11:16 AM

I take all my supplements per my oncologist who specializes in supplements and integrative medicine. Then I google. Then I try -- one at a time, for 4 days, then I add.

I take NAC (N Aceytl Cysteine) 600 in the AM (rids body of toxins, supports healthy liver function, also seems to help muscle and joint pain) -- but hey, if it boosts my brain power, I'm in...

I also take L-Carnitine 500 X 2 (energizes, relieves muscle and joint pain). When I have more energy I find I can think better.

Co-Enzyme Q10 -- 150 X 2 (good for gums, heart, energy) and works well with the above two to relieve muscle and joint pain.

I take (per my holistic onc) NADA -- 5 mg X 2 (it's a potent anti-oxidant amino acid that relieves chronic fatigue, BOOSTS MENTAL ACUITY, support healthy oxygen-rich blood, detoxifies kidney, lung, bowels and blood stream, improves cellular energy and cell regeneration, boosts immune system). I SWEAR I AM CLEARLY THINKING WITH THIS LITTLE PILL!

Now I'm the one who remembers who that actor is, the movie no one else can recall that he or she was in, etc.

I believe all these supplements help me remember better. Now at age 67, it's a battle in and of itself, getting the whatcha ma callit to make it's way out of my mouth. So all things considered (including all the chemo and 10 yrs of Vitamin H) I'm reporting good results to anyone willing to listen.

Andi

imdavidson · 07-05-2012, 02:38 PM

Andrea and Rhondalea, would you mind sharing the brand names of the supplements you take? Are they pharmaceutical grade through your docs or are they over the counter from vitamin stores?

And Rhondalea, I know that modafinil is hugely expensive...too bad.

Thanks!

Ruth2 · 07-05-2012, 05:12 PM

I was so glad to read these postings. Laughter has helped some, but that only goes so far. Since my mother had dementia, I have tip-toed around the chemo brain effect in terms of talking about it but have been working on healing and also talking more about it with people close to me. Thanks for sharing what you are trying.

rhondalea · 07-05-2012, 06:51 PM

Andi, I wish your oncologist were my oncologist. I had to figure it all out on my own. I subscribe to two professional databases (Natural Medicines Comprehensive Database and Natural Standard), but I don't really have the necessary background to understand the science, so it's a lot of work.

Idelle, I am happy to tell you anything you want to know. ("More than you want to know" is more likely--the one symptom that hasn't abated is the babbling. Mostly I'm quiet, but as soon as I get started, I.just.can't.shut.up.) Although I haven't finished your book (I'm really behind, but I now believe that I can get caught up), just the bits I was able to read when I was truly addled were a huge help to me.

I started out using only a couple of trusted brands; specifically, Jarrow, Doctor's Best and Source Naturals. (For herbs, my brand of choice is Nature's Way.) I've also tried some of the ridiculously expensive specialty brands just to see if they lived up to the hype implied in their cost. All that was a while ago. More recently, I decided to give Swanson Vitamins and Vitacost a whirl. (My husband doesn't complain--I don't shop for much else--but I was spending an exorbitant sum on supplements.)

If results are the standard, the quality of both Swanson and Vitacost are comparable to the name brand supplement manufacturers. Currently, most of the "brain supplements" I use come from Vitacost.

My oncologist has never recommended a supplement to me. Not her thing, but it's possible that may change--her nurse called me a few weeks ago to ask what supplement I took during chemo to prevent neuropathy (because I never had a single tingle). Perhaps it's the beginning of a trend.

karen z · 07-05-2012, 09:14 PM

Very interesting thread- thanks for starting and for all posts.

KsGal · 07-06-2012, 12:22 AM

I can definitely keep a journal and see if/how things improve.

Ann-I know its not funny that you missed chemo, but I did giggle because I am doing that exact same thing. Not only do I not know what day of the week it is sometimes, I am totally convinced it is a different day. All day Monday I thought it was Wednesday (i have no logical explanation for this whatsoever), and almost called one of my employees to ask him why he didn't show up for work before someone pointed out to me I was looking at the wrong day on the schedule.

*sigh* I am convinced that cancer attacks only really good, smart, giving, good-hearted people, because everyone I have met here and at chemo are sooo wonderful and teach me so much. I wish we didn't have to deal with things like chemo fog and lymphedema and rashes and hair loss and pain and, well, CANCER, but Im really glad I found a place like this to help me learn about about these things and how to better cope with them.

Andrea Barnett Budin · 07-06-2012, 10:58 AM

Hi All!

In response to your post Idelle -- I use Vitacost.com for almost all my supplements. Their prices are excellent and I find the quality to be very good!

Some things that I cannot get at Vitacost I get from VITAHEALTH HEALTH APOTHECARY. My Manhattan onc -- who is into supplements, meditation, guided imagery, sound therapy and more (I absolutely love him since the moment I read his book, Healing Essence on the closed toilet seat in my bathroom at 5 AM one very long night in '95) -- recommends this place, also in Manhattan.

Their prices are like Vitacost and my onc loves the quality of all their products. And he is fussy. Particular.

VITAHEALTH is -- 212 -- 628 -- 1110. They've been shipping to me in Florida since '98. Fast. No shipping costs or taxes.

Vitacost is no shipping over $50 (which I manage easily) and no taxes.

Did someone say something about babbling????? I like to think I am friendly, open... I talk to everyone. Strangers, people I am ordering stuff from on the phone. We strike up the most amazing conversations. I learn a lot. And they are delighted to have met me. I make them laugh. And that is joyful!

I have always -- btw -- kept a 5 x 7 piece of paper for each day. Todays has Friday, June 6th on it. In the right hand column I list all the calls I have to make. In the center column I list all the places I have to go (and note BR, which means BRING in appropriate places). That's cause getting to the dry cleaner without the clothes I want to drop off has happened. I try to learn from my mistakes. I don't want to get to a store to return something and find I don't have the item. Been there, done that, as they say. In the left column I list all the things I need to do in the house.

I put red lines next the most important things. Most urgent. I never do all the things. I move things to tomorrow's list.

My point -- I basically know what day it is. Though I have showed up at a restaurant to meet friends a week early, finding no reservation of course and no friends. Oh dear.

PLEASE LET ME DIGRESS FURTHER. SOME RANDOM THOUGHTS THAT BEG TO BE SHARED: Yes, my Mom had Alzheimer's and I am trying to keep my brain active and organized. I go to extremes, but then I am OCD. I have always been known for being super organized. Virgo...

Laughter has also helped me in the worst of situations and daily! Put that on your list of things to do!!!!!!!!!!

I agree that cancer hits "really good, smart, giving, good-hearted people" KS. Is that for Kansas?????

I have met so many people in chemo rooms in NY and Fla since '95 and they all fit the bill. There's Type A personality and there's big C personality, I noted many years ago. So many incredible people!

In the Nursing home, where my Mom lived for 9 yrs, after 3 yrs of me arranging a mini hospital for her at her apartment 24/7, they would announce each day -- TODAY IS FRIDAY, JUNE 6th. Not sure if they included the year. Of course, my Mom did not benefit from such announcements. She honestly didn't know her own name. And Heaven knows who she thought was President. But she had her moments.

One day, watching Phil Donahue at 4PM with her, I had chattered on and on in my monologue as she could not speak -- the first woman President of NHI (National Health Institute) was on and saying she had initiated drug trials on women which was unprecedented. She pointed out that women responded differently to drugs than men and it was important to research this! I repeated it all to my Mom who as usual starred blankly at the screen.

And my Mom said, haltingly -- IT'S ABOUT TIME! Wow! She totally got it. And she made my day.

Keep smiling and laughing Ladies! Oh, and sharing your thoughts. They're really important!

Andi

BonnieR · 07-06-2012, 12:53 PM

KsGal, who prescribed this for you? Curious to know if it is being used in the cancer treatment community.
I had resigned myself to permanent chemo brain but I notice that things are improving gradually. I think good old TIME might be the best medicine for me.
And I suppose some of my symptoms are just age related (sigh)
Keep the faith!

imdavidson · 07-07-2012, 05:30 AM

Rhondalea, I didn't know about the Natural Medicines Comprehensive Database or Natural Standard so thank you for that and for the brands of supplements you use. I also appreciated your kind words about our book, thank you.

Andi, thanks to you as well for the supplement info and for describing what you list on that 5x7 piece of paper. Really helpful! I've been keeping a large spiral notebook on my desk for years where I write EVERYTHING down: notes from phone calls, appointment info, etc. Some of that gets transferred to my calendar but it all starts in the notebook. I used to write notes on little scraps of paper which ended up making me crazy. Now, even if the info isn't all that organized, at least I know it's all in the notebook somewhere which never leaves my desk and I can generally find things chronologically. I like your idea too and may incorporate it.

BTW, I laughed when I read your description of showing up to the restaurant a week early (been there, done that) and what a sweet story about your mom.

CoolBreeze, I interviewed dozens of patients and former patients while researching our book on chemo brain and I can tell you that difficulty with word retrieval was one of the symptoms people talked about most (along with slower processing speed, problems with making decisions, etc.). I went through it myself (although better now).

And good luck with your supplements, KsGal. Loved reading the other posts too about humor. I think laughing really helps.

Best to everyone.

rhondalea · 07-07-2012, 11:40 AM

I should have added this link:

http://3rdparty.naturalstandard.com/frameset.asp

Edited to add: I de-clickified the link, because if you click it, access will be denied. The entire line needs to be cut and pasted into the address bar of your browser. I'm not sure why this happens, but that's the way it works.

An annual Natural Standard subscription for individuals is $200, which may be off-putting to those who are not total obsessos (like me). On the other hand, the above link is free, and for most people, it's probably more useful than a 100+ page supplement monograph. (Although if anyone would like to read such a thing for a particular supplement, my license includes sharing privileges.)

The Nutritional Medicine Comprehensive Database has a consumer version that's half the cost of the professional version. I seem to recall that at least one cancer center has an account which allows patients free access (MD Anderson, maybe). I don't know of any other cost-free links.