Vitamins/ Supplements?

Hello everyone! I am a new comer on this website. I was diagnosed with BC stage 4, her2 +++ with liver metz last month. My tumor was 1.7 and negative on the lymph nodes. It was a good prognosis originally and I was stunned when I finally got the results of the CT/PET scan that one spot showed on my liver. I am 45 years old with a 9 month old baby. I am suppose to start with my chemo treatment with herceptin next week. I find strength and courage reading all what you have or going through. It really helps a lot.
Just curious .... did anyone take some vitamins or herbal supplements while on chemo and herceptin to help with the side effects of the treatment?


Helen

Hi Helen. I can only tell you what I did for my Mom after she was diagnosed. If anyone thinks that I am doing anything harmful, they are free to post with their opinion. Mom is getting Hereptin weekly now. Her cardiac function was good to start with, but I wanted to try and support it any way I could. I give Mom 100mg of Coenzyme Q-10 three times a day with that in mind. I also see that she receives the following:

Fish Oil supplements containing EPA/DHA Omega 3 fatty acids

Conjugated Linoleic Acid

Gamma Linolenic Acid

Alpha Lipoic Acid

Biotin

Flaxseed Oil Mix containing: Alpha Linolenic Acid (Omega-3), Linoleic Acid(Omega-6), and Oleic Acid (Omega-9)

The Amino Acid supplements L-Lysine and L-Proline

Beta Carotine

Alpha, Beta, Delta, and Gamma Tocopherol (E-Vitamins)

Selenium

Zinc

Indole 3 Carbinol

Resveratrol

Vitamins B-6, B-12

Vitamin C

Folic Acid

Multivitamin w/calcium

Curcumin

One Tablespoon Extra-Virgin Olive Oil

Whey Protein Milkshakes containing Whey Protein Isolate, Skim Milk, and 8 ounces of Ensure

Concentrated Green Tea Polyphenols containing 500mg of Epigallachatachin Gallate (EGCG)

Additionally, I feed her no red meat, mostly fresh tuna and salmon, with occasional chicken. She drinks about 5 cups of decaffeinated Green Tea daily, 8 ounces of Pomegranate Juice, 8 ounces of purple Grape Juice, 8 ounces of Orange Juice, 8 ounces of Unfiltered Organic Apple Juice and plenty of water. Every so often she drinks fresh Organic V-8 type Vegetable Juice. She eats at least one salad each day, made with Spinach or Green Leaf Lettuce, and Organic Tomatoes. I give her fresh steamed Broccoli or Aspargus every day. She eats a fresh Sweet Potato every other day. Breakfast is usually fresh Oatmeal with raisins, fresh blueberries and strawberries, or an organic Flaxseed Cereal with skim milk. She eats lots of Red or Black Grapes, Cantalope, Oranges and Apples. Everything cooked is prepared with Extra-Virgin Olive Oil, and the Fish is steamed in Fresh Garlic and Olive Oil. I give her NO butter or margarine.

I know this seems like a lot of stuff, but it is spread out over the course of the day and evening. I have spent hundreds of hours researching this nutritional plan from only the most reliable sources. I hope this might help you in some way. Again, if anyone has any suggestions regarding my plan, please post such recommendations/complaints. I would of course, clear any of these things with your oncologist/radiation oncologist, as some of the anti-oxidants may not be appropriate during certain segments of your treatment.

Good Luck, and Many Prayers to all of you.

I went to see a cancer nutritionist who was very informative. Tomorrow when I'm not so tired, I'll send you the info.

Love and light,

Lisa

Wow Tom! What a lucky mom you have. Can you come take care of me?HaHa! God Bless You Both- Cathy

Tom,

WOW!!!!!! Your Mom must be a very special person as you are for taking such an interest in her fight.

If I could make a few comments, for the benefit of Helen as well.

IF your are taking chemo (and herceptin is not chemo) care should be taken not to take powerful anti-oxidents. From your list these are:


Alpha, Beta, Delta, and Gamma Tocopherol (E-Vitamins)

Selenium

Vit C

Resveratrol

Curcumin

The last 2 are particularily powerful

CoQ10 is also an anti-oxidant but I think the added benefits to the heart out-weigh the risks.

Indole 3 Carbinol reduces estrogen binding and is only useful if your cancer is E+, that being said if you are E+ and taking chemo I wouldn't take Indole 3 Carbinol just as you wouldn't take tamoxifen.

Folic acid....the jury is still out on this one but I would avoid it with chemo.

As well, I would look into COX 2 inhibitors, celebrex being one with a so-so bad rap. (that study was done with something like 400 mg 2x day) A normal dose would be 100 mg 2x day.

You mentioned blueberries: that is potentially one of the most powerful anti-tumor foods available.

I would avoid all of the commercially available anti-cancer tonics and concoctions such as essiac, laetril, mistletoe, etc.

I have heard good things about Poly MVA, it is a mixture of Vitamines, Minerals and aminos and Palladium.

What has really shown great promise for anti-tumor, especially for the liver is IP6 + Indosol by Enzimatic Therapy. My wife takes 1600 mg 2 or 3 x / day.

She also takes Rhodiola Rosea 2 x day for energy. It is an adaptogen with anti-tumor properties and has mild anti-oxident effects. I find it really improves her quality of life.

Maitake is great for blood support.

Good luck,

Al

I believe that during chemo a whole foods diet is the way to go with the only supplement being an inclusive multi vitamin/mineral tablet.

The synergy between whole foods doesn't overdo anything (even eatting a 1/2 cup of blueberries on cereal won't curtail the effects of chemo - but I do believe if you took too many blueberry extract pills the effects would be too much).

If you are only on Herceptin and an aromtase inhibitor (if hormone positive), I think supplements are fine (although whole foods and a superior diet that is free of added sugar is the best medicine ever).

Becky

Hi Helen -

Both my med onc and radiation onc wanted me to only do a multivitamin while doing chemo and radiation. The logic being that you did not want me inadvertently protecting the cancer cells while we were trying to destroy them with the chemo and radiation. My medical onc finally agreed to let me continue taking COQ10 but not during the few days around my chemo treatment. Once I was done with treatment and only doing herceptin I was able to add all the suppliments back into my daily routine. I also think eating well - low fat, organic and lots of fruits and vegies helped me ready my body for chemo.

Good luck

Tami

to Tom, How is your mom doing? what stage was she? Any recurrence? If you don't mind me asking. Thanks, Laurie

Helen~ Tom's very impressive list is very similiar to the regimen that my Traditional Chinese Medicine (TCM)doc has had me follow for the past 2 1/2 years. Most all of those ingredients can be bought at a regular health food store-I've found the Vitamin Shoppe to have the best prices. In addition, my TCM has a very specific schedule re: how & when to take the different supps...for example, no supplements AT ALL the day before, the day of & the day after chemo so that you aren't doing anything to bolster cell health, good or bad, while you're trying to kill them w/chemo. The supplement schedule in the following days is designed to help your body rid itself of all the dead cells & toxins, and then encourage cell rejuvenation-rbc's, platelets, etc.
As for our allopathic docs discouraging supplementation, keep in mind, they fear what they do not know, so ofcourse they can't support or recommend something they have little knowledge- the average doc knows almost nothing about simple nutrition, even for the healthiest person. 2 years ago, I went to Sloan Kettering & met w/the head of breast oncology, Larry Norton, MD. He almost choked when I disclosed the full list of supps I was taking. They told me, STOP EVERYTHING!! Well, ofcourse I didn't...but now 2 yrs later, MSK has devoted a whole department to research & explore complimentary alternative medicine ie:TCM, accupuncture, nutrition/supplementation, massage, etc. Go figure...
I believe that the supplements have really helped my keep my body healthy & strong, so that I can endure the treatment & not have to stop chemo prematurely b/c the toxicity was so great. I've done 73weeks of tx in the past 3 yrs, maintaining a very active lifestyle, teaching pilates, traveling, even doing a 40km/5hr cycle thru the mtns of Guatemala 5 days after tx#67!
Good luck to you. please let me know if you'd be interested in contacting my TCM (michael broffman@ the pinestreet clinic- www.pinest.org). He's in the Bay area & I'm on the east coast so we corresopond via email & phone when needed.
Keep the faith!
J

It's also important to drink plenty of good water, at the very least 8 cups or 2 liters a day. More is better, and alkalized distillled water is best. I have been told that cancer cannot grow in an alkaline (acid-free) and sugar-free diet. Sugar, I am told, is food for cancer. I eat fruit lightly, more fresh vegetables than fruit, and of course no added sugar, even subsitutes aren't good, except in moderation. I also eat no meat, only wild fresh fish, and no dairy. Meat, poultry and dairy today are all full of added hormones. Soda pop, even diet, is definitely not good. We use a lot of soy and make a wonderful milkshake of frozen banana pieces, a carton of soft tofu and about a cup or more of vanilla soy milk, and a thicker pudding with added nuts and/or unsweetened coconut . When we first started we used a lot of soy meat substitutes, but now vegetables taste so wonderful we don't even need many substitues. We eat an occasional egg but not every day. My husband is with me all the way and we have both lost weight. We are in our 70's and he has severe arthritis so we exercise only by walking and using a min-trampoline rebounder. I didn't mean to be so long-winded, but we are very enthusiastic about all this. It sounds like so many of you are doing great nutritional things. And of course we all know what faith, positive thinking, love and support do for us! I never say "I have cancer", only "I am fighting cancer!"( For 20 years now!)I can never say enough about this fantastic site and all I have learned here. Like many of you, I keep my onc on his toes! Love you! Tricia

It's also important to drink plenty of good water, at the very least 8 cups or 2 liters a day. More is better, and alkalized distillled water is best. I have been told that cancer cannot grow in an alkaline (acid-free) and sugar-free diet. Sugar, I am told, is food for cancer. I eat fruit lightly, more fresh vegetables than fruit, and of course no added sugar, even subsitutes aren't good, except in moderation. I also eat no meat, only wild fresh fish, and no dairy. Meat, poultry and dairy today are all full of added hormones. Soda pop, even diet, is definitely not good. We use a lot of soy and make a wonderful milkshake of frozen banana pieces, a carton of soft tofu and about a cup or more of vanilla soy milk, and a thicker pudding with added nuts and/or unsweetened coconut . When we first started we used a lot of soy meat substitutes, but now vegetables taste so wonderful we don't even need many substitues. We eat an occasional egg but not every day. My husband is with me all the way and we have both lost weight. We are in our 70's and he has severe arthritis so we exercise only by walking and using a min-trampoline rebounder. I didn't mean to be so long-winded, but we are very enthusiastic about all this. It sounds like so many of you are doing great nutritional things. And of course we all know what faith, positive thinking, love and support do for us! I never say "I have cancer", only "I am fighting cancer!"( For 20 years now!)I can never say enough about this fantastic site and all I have learned here. Like many of you, I keep my onc on his toes! Love you! Tricia

Sorry! It accidently got sent twice (as if once wasn't enough!)

Dear Tricia- You are such an inspiration!20 years???!!!That gives me such hope!Can I ask what kind of chemos you were on and where your disease was?I have a spot between my lungs and 3 5mm spots on my lungs.I am on herceptin and xeloda and I don't know what they will give me next. I get a petscan after 6 rounds. ( I'm on #3) Thank you again and God Bless you and your whole family- Cathy
PS - Do you get the alkalized distilled water at the supermarket?

Dear Cathy, Thank you so much for your kind words! You will love all the inspiration you will get on this site--it makes my day! To answer your questions: I was diagnosed with breast cancer in my right breast in 1985. My sister died of it later that year, so it was really scary. She told me to go for a modified mastectomy, even though the cancer was very small. I did at once and also a subcutaneous mastectomy on the left side, (which was showing calcification), plus reconstruction on both sides. That is all that was done then, no chemo, no radiation or anything. 5 years later, in 1990, it moved to T9 & T10 vertebras. I studied psychonueroimunology or mind imaging with Carl Simonton, and as I was already a hypnotherapist, self-hypnosis was really easy and I was very diligent at using it many times a day to picture the cancer vanishing. I also received many spiritual blessings with my whole church congregation fasting and praying for me, plus the support of my husband and large family. I was put on tamoxifen, again no chemo or anything else. I did begin to modify my diet, but not as diligently as now. 14 years went by. I had stayed on tamoxifen for 5 years, got yearly MRI's for the first 10 years. The last report stated "healed metastatic cancer." I think I got too relaxed then, because I just kind of forgot the whole thing! I probably wouldn't have discovered the met to my lungs until it was too late, but I had a heart attack a year ago June, and in preparing for surgery (which has never been done), lung mets were discovered. It was 20 years from the first cancer. I tested for her2 and I started on femara and herceptin, plus navelbine for the first 6 months. I am now, a year later, on just femara and herceptin (twice a month). The lung mets are still small, no growth at all in a year. I had a bone scan recently because something is suspicious in T11 vertebra, haven't got the results yet, but I'm not too worried. I still do the imaging and prayer and so on, plus the diet now, and I feel great. We are following Dr. Robert Young's "pH Miracle diet", and I got a water purifier he recommends that filters and alkalizes tap water. I can give you more info on that if you wish. So that is the 20-year story! Best wishes! Tricia

To Laurie S. I apologoze for not seeing you question sooner. As to my Mom's staging, and current status, we found ourselves in a peculiar situation. When we discovered the lump in her breast, I went out an hour later and bought Dr. Susan Love's latest book on breast health. I read it cover to cover.
The following day I scheduled a mammogram and ultrasound for the same day. The test were done only several days after I found the lump. I knew what it was the moment I found it, so I was not surprised when the mammo doctor told me it was almost certainly malignant.
I found a surgeon who came highly recommended and I researched their background. I picked a surgeon who listed lymph node mapping as one of their specialties. At the first visit with the surgeon, they saw I was very upset and tried to comfort me by saying that the tumor seemed to be less than 2cm. Yhey asked me how I wanted my Mom's treatment to be handled, as she is elderly. I stated emphatically that I wanted the treatment to be aggressive. They said OK. I said I was concerned because the tumor presented as two separate masses on the mammogram, which suggested to me that it was likely of an invasive type, as well as the fact that there was a palpable lymph node under the arm on the same side. Again they reassured me that it was clearly an early stage, and would be removed with a follow-up therapy of Tamoxifen. I asked what we would do if it were not an ER+, or PR+ malignancy, as she might be too old to handle any conventional chemotherapy. I was told, and I quote, "Don't worry, I'm sure it will be."
The surgery was done about one week from the moment I found the breast lump, and I was relieved that we had acted quickly. However, when the surgeon emerged from the OR to speak to me after doing an excisional biopsy, I was told that only the enlarged axillary node was removed during the procedure. I then asked if it was the sentinel node that had been taken. Too my horror, the answer was no. It was necessary to perform a second resection of tissue near the wall for a clear margin. Again I was told that there was no need to worry. I was discouraged from seeking radiation therapy, being told that it "was too much trouble and would not affect survival, only reduce the likelihood of recurrence, and that if it recurred locally, it could simply be removed again.
The real nightmare began with the follow-up pathology report. The tumor was ER-, PR-, and HER2+3. The single node removed was determined to be negative for disease.
Now, I was really worried. When the surgeon discussed the pathology report that showed the tumor's HER2 make-up, they said, "Gee, that's really weird." It was hardly a comforting response. My earlier fears had been confirmed. Now, I ws directed to seek radiation therapy. Swell!
So off to radiation therapy we went. The first thing they asked me of course, was what STAGE the cancer was. They were stunned when I said that we didn't know. I explained that we had no definite staging because there was no standard or sentinel node dissection. The same story was repeated at the oncology visit. I felt like the village idiot when I did not have the basic information needed for a treatment plan.
The next nightmare begins almost a year later, when I discovered axillary nodes that were enlarged on week and down the next. I finally pushed for a needle aspiration of an enlarged node. The node proved to be positive, of course. AGAIN, the same surgeon asked me how I wanted to handle it, suggesting that we might choose to do nothing, and that I should simply enjoy the time I had left with Mom, rather than fight. I was told, and I quote, that "It would be nice if we couold all live forever." This was tough to hear from the same person who earlier said not to worry when my concerns were expressed.
I insisted on a second surgery to remove as many of the involved axillary nodes as possible. The pathology showed that of the twenty nodes removed, twelve were malignant. There was also evidence that the cancer had spread outside of the lymph nodes themselves.
So here we are, a year after I first found the lump, with HER2+ B/C that has spread beyond the breast. The oncologist and radiation oncologist have concurred that the cancer was there all along, and had simply gone undetected and unresected. This is the reason that I tried hard to investigate the best possible vitamin/supplemt/nutritional plan. Mom is now undergoing a second round of radiaiton thereapy, to treat the nodes that would have been radiated the first time had we had the information back then. She is also now receiving Herceptin every week. We won't know how she is doing until we have some more diagnostics done.
I am sorry the story was so long, but I thought it would be useful to know some of the pitfalls of taking any doctor's recommendations as the final word. I have learned the hard way, that if you have a concern, you must INSIST that it be addressed thoroughly. Right now, I am fighting Medicare and the pathology lab, which refuse to pay for the new HER2 SERUM ELISA test from Bayer pharmaceuticals. They claim that it is to be used only in rare circumstances. I promise I will not go down lightly this time. I am tired of people pooh poohing my genuine concerns with respect to treatment. I will keep you informed of Mom's outcome as time goes by. Thanks again for asking.

Tom,
I emphazise with you frustration!! All the more reason why one should take responsibility for their own medical destiny.

Regards,
Al

Thank you everyone for all the tips and feedback. I have already started making changes in my diet by eating mainly vegetables and fish, fresh juices and working on doing more changes. I am just starting to cross the "bridge" fighting this monster. I will start on on my first dose of herceptin and taxotere/carboplatin tomorrow. I am so grateful with this website and everyone sharing their experiences and comments.
I will be in touch.
Best wishes to all.

Helen