complementary supplements with chemo/herceptin

Hi, Tara ~ I can address the nail issue.  Yes, I have read that painting nails a dark color will help protect them.  Also, be sure to ice them during your infusions.  You can do that with ice mitts (which some centers provide), or a bag of ice, or even a bag of frozen peas -- anything to keep your fingertips and toes as cold as possible, to cut down on the Taxotere circulating to those extremities, where you don't need it and it can damage nailbeds.

I used B6 to help with neuropathy, another common SE of Taxotere, and I've read of women using L-Glutamine for the same thing.    As far as the others, best to check with your onc.  They're probably okay, but he/she may feel strongly about one or more of them based on experience.  But from what I've heard, the only things they are especially leery of is antioxidants, because they don't want you taking something that may unknowingly protect the cancer cells.  

Good luck, and great that you're seeking out holistic support.  You should do really well!  Deanna

Hi Tara,

You are thinking the very same questions I am.  I was told by my Onchologist no to the L-Glutamine because they have found it protects the cancer cells. I am really concerned about the neuropathy caused by tthe Taxotere which is what I am taking too. It's sad becuase they don't seem to worry about the side effects of all this stuff they are putting into us. She did say vitamins are fine so I'm thinking B6 is okay. I started that the other day.

You and I are on a very similar schedule. I start Thursday the 2nd. I will get TCx 4. Not looking forward to it, but am looking forward to it being over.

Karen

A Review of all the published literature:

Published in: CANCER TREATMENT REVIEWS

Impact of antioxidant supplementation on chemotherapeutic efficacy: A systematic review of the evidence from randomized controlled trials

Keith I. Blockab, Amanda C. Kochab, Mark N. Meada, Peter K. Tothya, Robert A. Newmancd, Charlotte Gyllenhaalab

Received 13 November 2006; received in revised form 19 January 2007; accepted 23 January 2007. published online 16 March 2007.

Summary 

Purpose

Much debate has arisen about whether antioxidant supplementation alters the efficacy of cancer chemotherapy. Some have argued that antioxidants scavenge the reactive oxygen species integral to the activity of certain chemotherapy drugs, thereby diminishing treatment efficacy. Others suggest antioxidants may mitigate toxicity and thus allow for uninterrupted treatment schedules and a reduced need for lowering chemotherapy doses. The objective of this study is to systematically review the literature in order to compile results from randomized trials that evaluate concurrent use of antioxidants with chemotherapy.

Design

MEDLINE, Cochrane, CinAhl, AMED, AltHealthWatch and EMBASE databases were searched. Only randomized, controlled clinical trials that reported survival and/or tumor response were included in the final tally. The literature searches were performed in duplicate following a standardized protocol. No meta-analysis was performed due to heterogeneity of tumor types and treatment protocols used in trials that met the inclusion criteria.

Results

Of 845 articles considered, 19 trials met the inclusion criteria. Antioxidants evaluated were: glutathione (7), melatonin (4), vitamin A (2), an antioxidant mixture (2), vitamin C (1), N-acetylcysteine (1), vitamin E (1) and ellagic acid (1). Subjects of most studies had advanced or relapsed disease.

Conclusion

None of the trials reported evidence of significant decreases in efficacy from antioxidant supplementation during chemotherapy. Many of the studies indicated that antioxidant supplementation resulted in either increased survival times, increased tumor responses, or both, as well as fewer toxicities than controls; however, lack of adequate statistical power was a consistent limitation. Large, well-designed studies of antioxidant supplementation concurrent with chemotherapy are warranted.

Tara

I did Taxotere, Carboplatin and Herceptin in 2008.   I was stage IV right from the start with lesions on my liver, bons, and chest nodes.    After three cycles, I was NED and have remainded cancer free now since that time.     I took all through chemo and still today a whole lot of supplements.  During chemo I took a vitamin and mineral drink from my naturalist.  It had alot of carbon, oxygen, and other types of mineral in it as well.   I will have to remember the name.  It started with an "I".  Sorry that is not much help .   I also took (take) 2000 mgs of calcium, 4400 mgs of Vitamin D with magnesium, 400 mg of Coq10, 2000 mgs of Fish oil, 2000 mg of Flax, Biotin, Grapeseed Extract, a bunch of the "b" family, quercin, turmeric, and an antioxidant drink.    There is probably more but I am not at my house where I can look at my stash    My oncologist had her pharmacist look at everything I took. .. no problem with any of it.    I will tell you I was not sick with any kind of virsus or cold throughout my treatment.   I worked full time through it and yes I was sick from the chemo but really only had one bad day and then bounced right back.     You need to keep your body healthy ... through food, supplements, sleep, hydration.   I don't buy the theory that you are protecting cancer cells by taking supplements.   If you really want to make your whole body weak to allow the chemo to do its job .. then you shouldn't eat well or sleep, etc.    I also followed a very high alkaline low acid diet which provided invaluable to my gastrointestinal tract during chemo. 

Jennifer

I did TCH in 2009.  I respected the onc's belief that i should not take antioxidants for the 4 days preceeding and after each chemo, so I stopped for those 8 days. I figure I have the rest of my (very LONG) life ahead to take antioxidants, and now that tx is behind me, I DO. But I felt that i was entrusting my care to him during that period and would go by what he said.

I saw an integrative doctor also and was on a regimen of probiotics, aloe juice (1 oz before each meal), digestive enzymes, L-glutamine, hmmm... what else? I have to say it feels WONDERFUL not to remember every detail of that time.  (You will feel that way next year!)  Vit D3 also.   I tajke a strong calcium/d3 bone-builder supplement  as well as maitake fraction extract, green tea extract, DIM, CoQ10, powerful multi vitamin, fish oils and a teaspoon of tumeric with black pepper every morning. All together now....eWWWWWW.    But I started all that stuff after chemo was done.

I did have some magnesium to take when I experienced some strong abdominal pain, but finally had to call the onc for something stronger to relax the spasms.

I was VERY strong & healthy, exercised throughout chemo, worked throughout, etc etc. BUT please know this - it is NOT an endurance contest. Sometimes your body struggles with the SEs. It is not a failure to admit the natural stuff might not be getting the job done at any given point. I had to ask for various meds a few times during treatment and there was NO SHAME in doing so. The natural doc agreed totally.

Now that I am done (and I swear it does pass quickly), I am taking my supplements, staying away from sugar & alcohol, eating super healthy, working out very hard DAILY and taking super good care of myself.   You will get to this place - it just doesn't feel that way right now, but you will!

Re nails - I never had a problem. Don't know why. My nails have always been soft. They actually seemed stronger & harder during chemo. Beats me!  

Also - I did eat whey powder to help build my white count. My doc didn't do the Neulasta shot unless my blood work indicated. So I took the whey powder and never needed the shot. Don't know if that is what made the difference or not. Who knows.  I also took it during rads for the same reason. 

PM me if you have any questions.

Good luck and God bless all of you just getting started.  Anyone on TCH please feel free to visit our TCH board. It is a very active group of ladies at all stages of treatment, and many of us who are done still stick around to help the new ones.

I take 1/4c ground flaxseed every morning. I mix that with hot water and eat it.  So in a small separate bowl, I put 1t of the tumeric and a t of the flaxseed and grind some black pepper into it and mix w hot water and sort of drink it down.  I was making it into a thick paste & eating it, but it is spicy and sort of gross and I wanted to get it down faster, so I put more water in and make it into a thin mixture and just do it like a shot! (lol)

I do feel like since I started it, my body chemistry has changed a lot. I don't know if it is coincidental but I am not interested in sweets AT ALL (which is TOTALLY different than previous). And I just feel sort of 'different' - hard to articulate. But ..... I just feel like my body chemistry is different somehow. Maybe it's all in my head - I don't know. But I feel great. 

I saw tumeric capsules in the health food store for like $17 a small bottle. But at the farmers market, I get a plastic container of bulk tumeric that lasts for a few weeks for like $2 so that is why I'm not taking the capsules.

calamtykel, my first onc did the same thing with me.  She said "It shouldn't be a problem" and then later told me to stop everything.  I think you're right, they just don't know.

Amy - I wonder if there's someplace you could find empty capsules and then just fill them with the tumeric and pepper.  Of course, the cost of those and the time spent filling them might not be worth it.  Hats off to you, you're one brave lady to guzzle down that concoction every morning!

PLEASE be careful about the water.  Yes, you need it but a friend of mine took this too far and overhydrated.  She ended up in the hospital in a life-threatening situation.  "Gallons" of water is too much.  Please talk to your oncologist about how much water you should consume if you are taking it to that level.  Seriously, my friend almost died.

Hello Cheryl Q,

I wonder if you could refer me to an oncodietician in Oklahoma that is open to supplements such as poly mva.. I was just recently diagnosed with invasive breast cancer and should start chemo in the near future. I still do not know if I am ER or Pr+ or my her2 status. 

Poly MVA is much more than nutrition but due to FDA it must be listed as a nutritional supplement.  So easy to be thrown off.   Research thoroughly, and check out Dr. Forsythe in Reno, NV for referrals.  And there is a Poly MVA Foundation.  It has been used with chemo, low dose even on Stage IV in extreme situations and they recovered. 

All that stuff about antioxidants during chemo is outdated - Dr. Block from the Block Institute has lots of studies in his book and his blog about how supplements and antioxidants can both enhance the effectiveness and reduce side effects.  For instanct, 20mg of Melatonin has been shown to increase the effectiveness of chemo dramatically.  Take it at bedtime.  I also took Acetyl L Carnitine faithfully to prevent neuropathy and it worked.

Seriously, that "no-antioxidant" stuff is based on one study that came out 20 years ago.  Somehow, it just got legs and oncologists can't shut up about it, no matter how many other studies prove the contrary.  

Sweetbean...I'm not familiar with Dr. Block's research.  Could you please tell me how his research is quantified?  For example you mention Acetyl L Carnitine "worked" for you at preventing neuropathy.  Wondering if that was a placebo effect.  The reason why I mention this is because the DH has a rare genetic metabolic muscular dystrophy, carnitine palmitoyl transferase deficiency type II, which causes a defect in carnitine metabolism which interferes with the creation of energy from the mitochrondia.  With some genetic carnitine deficiencies, adding carnitine "works" and can be quantified, because there are blood tests that can differentiate between whether or not the enzymes are being processed in the mitochondria.  With the DH's disorder, we know that despite being considered a carnitine deficiency disorder, adding carnitine DOES not "work."

Likewise, the DH takes glutamine for a stomach motility disorder.  As you are probably aware, glutamine is an amino acid that is found in great stores in the gut.  It is used primarily for digestion.  More than a dozen years ago it was proposed that the reason why the DH was NOT digesting his food was because his skeletal muscle was scavangering the gut's glutamine to fuel his skeletal muscle.  Before taking the gluatmine, which by the way, is pharmeceutical grade and we get it in powder form by the KILO, he was giving a stomach motility test which confirmed that he had a "moderate" stomach motility disorder.  Days after he began taking the glutamine, his appetite improved.  Several months later, he had a second stomach motility test and it was confirmed that he went from a "moderate" to a "mild" stomach motility disorder.  He's been taking the glutamine ever since.

I just wonder how these folks quantify whether or not a certain treatment works.  When I hear claims by patients that something "works" for them...I truly wonder how they can make that statement without tests that quantify the difference.    You mention that you didn't get neuropathy from taking the carnitine.  However, how would we have known that you wouldn't have gotten it if you didn't take the carnitine?

You see, I am very PRO- alternatives, because there are NO medications that the DH can take to correct his genetic metabolic disorder.  We have had to rely on medical geneticists, endocrinologists, dieticians and a whole bunch of other medical care providers to keep him vertical.  During these almost 20 years of treatment the one thing that I've noticed is that these doctors will NOT put anything in the DH's body unless there is a clinical test that will quantify the problem and the treatment.  He also is in a clinical trial with a dozen other patients using an oil similar to "Lorenzo's Oil."  We know the oil also works for his disorder because there are blood tests that confirm the ATP cellular mitochondria activity before and after each dose of the oil.

I'll end by saying that I'm very annoyed that there is very little research on my specific type of rare breast cancer.  If you read our thread on mucinous breast cancer, you will see the frustration that we have that there is little information to guide us in our treatment.  Throughout the world there are only a handful of researchers guiding clinicians that treat mucinous breast cancer.....So please understand that I am very keen on keeping an open mind to all types of treatments.....However, I temper my enthusiasm because of the lack of research and clinical trials that quantify treatments.....

The above post is a review from Eric Topol, MD's new book, The Creative Destruction of Medicine.  The new book already has 4 1/2 stars from Amazon.  I think he is a visionary in the field of medicine and how clinical trials are heading.  He recently appeared at the Consumer Electronics Show and his speech was electrifying....

http://www.amazon.com/Creative-Destruction-Medicine-Digital-Revolution/dp/0465025501/ref=ntt_at_ep_dpt_1/192-9061381-2811965