Diet and suppliments during remission

[jdbobo]

My 65 yr old mom is on her 3rd of 6 rounds of platinum/taxol chemo for stage 3c serous adenocarcinoma (diag May '07 -- this is frontline IP/IV chemo).  Her pre-surgical CA-125 was 1200, and  that value has dropped to a CA-125 of 4 after her first two chemo rounds.   We feel so lucky to see the marker fall substantially and hope she will soon be able to begin a long remission.

However, as we all know, this beast tends to return.   I personally find it disturbing that the current standard of care for OVCA in remission tends to be "watch and wait".  

So my question to the smart ladies on this forum is what diet and supplements do you feel might help fend off and/or delay a recurrence of OVCA while in remission.   I've heard vitamin c, ginger, and COQ10 all may have anti-cancer properties.   But in what form and dose?  Any foods to avoid or add?  

[jdbobo]

Thanks for everybody's input.  this forum really is the best.

Conquerer -- I'm curious how do you go about getting IV Vitamin C?  I've just started reading up on Pauling, Hoffer, and the current studies being done by Drisko.  Really interesting stuff.   Is your IV Vitamin C prescribed by your oncologist, GP, or otherwise?  

[freshair]

Also when she's off chemo and thinks of supplements. Milk thistle protects the liver. My feeling is you want that after IP. They even say while on chemo it's good but check with your doctor. Allowing three days being off of it before chemo and 3 days after.

Life extension is a good website also. I think the website is LEF.org

[freshair]

I'm on steroids!!!

[alanpvegas]

Wow you are on the right track!  Fish Oil has been shown to prevent cachaxia (lord I bet I'm spelling that wrong)...the wasting syndrome.   Lowering stress is good too (shown to help ovca spread) and less meat is good too! :)

[freshair]

And also, most important KEEP STRESS OUT OF YOUR LIFE. There have been studies on that with overall survival.

Everyone's metabolic makeup is different. Such as a macrobiotic diet may be helpful for one but not for another. You hear good results for one on such diets but everyone is different. You have to go with your gut feeling.

Ever since I had the brain surgery my gut feeling said to go low on dairy. I make almond milk.

Alan I take melatonin. Good for the brain. And also better than sleeping pills. When I am not on chemo I take Gingko Bilboa, Turmeric. My neurologist said yes to that. On chemo I take a good multi-Alive, CoQ10, mushrooms, Fish Oil now and then, grapeseed extract, green tea. All recommended by the nutritionist at the hospital.

You can read a lot of books at the library. Lower your meat intake meaning small portions, tons of different vegies, celery every day--highly alkaline, replace meat meals with different bean dishes (beans regulate insulin which is a growth promoter). Eat a cruciferous vegie every day. Lots of salads, sprouts, raw food for their enzymes. Apples, kiwis, grapefruit, berries.

If you want a great nutritional book I highly recommend  whfoods.org and buy their green book "The World's Healthiest Foods" And you can sign up for his weekly food recommendation. It's a huge book packed with nutrition, recipes, charts with breakdowns on vitamins, amino acids, etc. in foods. Such as If you are looking for good calcium foods it lists them from excellent to good.

And don't go overboard. That creates stress. Everything in moderation. Lots of fluid and exercise (I walk-love nature, beach and garden)

And eat that dark chocolate or dessert here and there. Have to take care of the mind also.

This disease seems to always come back and a few are lucky where it doesn't reappear for years. I am hoping your Mom has a very long remission. And I believe by re-adjusting our lives we benefit and slow it down. But I stress, no stress.
Best wishes, Helen

[Helmar]

Hi Alan.. Thanks for your response, as I was wondering how your Mum was doing if taking these 'extras'. I suppose it's hard to say what works and what doesn't, and I guess it's like the treatments.. sort of 'trial and error'. In your Mum's case, it must be harder for her too, if she's not eating so well. I think that's where I'm lucky.. I've always had a good appetite, so can eat lots of fruit and veggies...and nuts, just love those nuts. :-)  This is an ongoing battle for most of us, so we can only hope that we make the right decisions along the way.
Wishing you and your Mum all the best.. and I hope she does well with the weekly 'fix'... Hugs..Helen.

[alanpvegas]

Hi!  Actually mom has only rarely been able to take them and even then she is pretty traditional and only wants chemo (she doesn't like to do pills).  However when I introduced her to some stuff her symptoms improve.  For example she takes Melatonin (3mg) and that finally helped her sleep so she didn't need the prescription one.  She does Maitake D-Fraction (MDF), but not as much as I would like.  When she had her J-Tube, I could put it directly ino\to her Jejunum and we had good results.  However after that was taken out, it was tougher with her constant vomitting and such, so it was unknown how much was reaching the intestines where it needs to go to get absorbed.   So it's tough to determine if they work on her, although the one month we routinely used MDF via J-Tube was enouraging.

Basically it's tough for her to take any of the above because of her gut; she's on TPN and PCA right now because of it.

[Helmar]

Hi Alan... I'm just curious...nothing else, but wondering is your Mum on the above? If she is taking these 'extras' how are they working for her?  I've not taken any 'extras' at all, but wondering if any of that stuff that you seem to promote, does actually work? :-) I hope your Mum is doing well, and things are going good for her now.  hugs...Helen...

[alanpvegas]

I'm working on an article that actually addresses your questions, but for now:

1) Maitake D-Fraction:  Get the Grifron Pro version from www.maitake.com.  It's the one used for and applied for IND status in the FDA Phase II trials.  Because it's not FDA approved yet, no cancer cures can be made.  Boosts immune system which is believed to relate to anti-tumor activity.  It's one of the safest ones you can take if you don't have an autoimmune disorder.  Large cancer treatment centers allow it above anything else.  In addition it's the only beta-glucan you can take orally *effectively*.  Other medicinal mushrooms must be injected for optimum 'anticancer' activity (which is done in Japan)

2) Vitamin C:  Especially helpful with Maitake D-Fraction, the 1000mg range is correct.  Synergetic Effect.

3) CoQ10:  Perfect...you are looking towards 390mg per day.  Some people split it up.  You can build yourself up to that level, say 100mg a day and progressing upwards to the 390mg.  I have an article on it here:
http://www.alanpeto.com/ovarian_cancer/articles/7/1/

Others include:
Genistien & I3C
Turmeric
Omega 3 (Fish Oil)

Now, when she goes into remission...you can lay off quite a bit...for example Grifron Pro Maitake D-Fraction can be replaced by the standard Maitake D-Fraction at non-therapudic dosage.  CoQ10 can be scaled down to about 90mg/day instead of 390.

The fact she is in 'remission' with a ca125 of '4' after treatment 3 is a good indicator of success.  Many oncologists want to see remission by cycle 3...my mom never has been in remission nor a few other people in this forum.

Keep the cancer at bay (yes, it's still there).  She may want to look into the vaccine trials or other trials aimed at keeping the cancer at bay (they are out there).  But it's great you are looking into the natural methods as well...as wonderful as chemotherapy drugs are, they are still toxic and take a toll on the body and we are seeing more and more 'natural' based chemo's by the pharms (for example Soy Genestein which has activity in ovarian cancer was modified into a drug called Phenoxodiol that is in Phase III trials right now for ovca).

[Conquerer]

Well I am one that takes alot of supplements and am currently once a week havein 75 grams of vit c intravenous.  I take E B comple 90 Co Q10, 4,000 ginger, 1 gram c, myatake mushrooms,   Who knows but I want to stay strong and healthy.  good luck.

[Helmar]

Hello...I feel that you will get lots of suggestions and thoughts on this question, and you are right, this beast does tend to return at some stage, but then one can go for years with it being treated as a chronic disease, so never give up even if it does return in the near future. Your Mum could be one of the lucky people, who can go for years before is shows any sign of returning. With diet etc... personally I don't take any extra vitamins or supplements, but just opt to eat healthy. I know some ladies don't advocate sugar, dairy or red meat, but I just think that once we are dx with this disease, what we eat doesn't seem to make much difference with the outcome, but maybe the extras help in staying well enough to deal with the chemo and side affects of it. I know ladies down here who have all sorts of vitamins and supplements, organic food etc.. and have been strict with that intake, but still the beast has returned, so I don't know. I guess we all have our own ideas on how to deal with it. I eat red meat... on the advice of my Oncol. I also eat icecream, have milk in my tea and coffee, and I eat sweets....especially dark chocolate... and I seem to be going o.k. Dx Stage 4 Feb'04.
I think as long as your Mum eat lots of fruit and veggies, (I do).. and has a good 'across the board' diet, and if she feels that by taking some 'extras' that will help, then that's the way to go. It's a personal choice on how we combat this disease, and we do what we feel is right for us, as we are individuals.
I just want to wish your Mum all the best, and I hope she continues to do well. The low CA.125 after only two treatments is very encouraging, and hopefully will go onto a long remission for her.
All the best...hugs...Helen...