I've done alot of research recently on the PTEN testing that is going on at md anderson. What I've discovered, was that if you are low on PTEN protein, they want to give p13k inhibitors to restore the PTEN, so that you are more sensitive to Herceptin. I've found that Beta Glucan is a p13k inhibitor. Beta Glucan can be purchased otc. I asked my Dr. about this, and she said that they have not enough studies for her to say it's ok to take it. So I've also found that maitake mushrooms are also a p13 inhibitor. They are doing studies on the mushrooms now for breast cancer use. Japan is using them already with their breast cancer gals. I've found that the mushrooms are not toxic at all. I ordered the d-fraction maitake mushrooms on an internet site that i found. 360 of them were 50$. I thought that while I'm still on Herceptin that maybe it would help me if I'm low on this PTEN protein. Well, i know it can't hurt!!

I am currently on neoadjuvant chemotherapy which is chemo before surgery. When I had my first treatment, my breast and Lymp nodes were throbing because of the initial reaction to the chemo fighting the cancer. When I started taking the Beta Glucan half way through my treatment, I felt that same reation in my lymph nodes (by this time the cancer cells in the breast was almost gone so I did not feel any thing there) as if it jump started the chemo. I am going to add two studies that reference Beta Glucan and Herceptin but if you google the two together, you should come up with more informationBeta GlucanBeta Glucan

Kim

The complementary naturopath recommendations I got before starting chemo included concentrated maitake. Also, in the last year I've been eating them whenever I could get them here, which varies. Thanks for the info!

Hi -
I am also VERY interested in the PTEN/P13K theories.
I entered a trial for patients with hard-to-treat (meaning fast-growing and extensive) mets. I was the first one through the trial with a complete response and am the farthest out from getting off the chemo without a return of active disease (2 years/4 months).
I ate a LOT of organic shiitake mushrooms (3 times a week) from the beginning of that trial and still have them once a week. I also took some Maitake capsules, but they did not cost anything like $50.
I am hoping to find a way to get my blood tested as soon as possible for the PTEN levels. My med onc was quite interested in this info and will be watching how things develop at MD Anderson.
I say go for the mushrooms - didn't hurt me.

StephN
I asked my dr. about testing me for PTEN also. There is no blood test for it. I think they were doing testing off original tumors at mdanderson. If you find where they can do testing let me know!

I take both Maitake and Beta Glucan from Pure Encapsulations (they use vege caps). They sell wholesale to health professionals including massage therapists. The Maitake was recommended by a naturopath and the Beta Glucan by an orthomolecular doctor. Regards, Carol

Carol,
did you have any problem taking them both? I know the maitake mushrooms have beta glucan in them, that's why they say they work. Did you take the beta glucan in a pill form too?

This is so helpful. Thanks for sharing. Kim if you return to this folder, the links to those studies didn't seem to take. If you have better ones I'm sure we'd all love to see.

Me too, in Italy, I am taking maitake mushroom which I can find under the name FU-DAN (costs 75 euros). A friend of mine, who has the same problems, suggested it to me. She told me it helped her a lot when she was taking taxol, which is very strong (hair loss, etc.) I am now on Herceptin+Xeloda, plus I am taking maitake on a daily basis, 15 drops 3 times a day. I haven't had check up yet, but will let you know!
Ciao, Beatrice

Michelle - Can you give a basic tutorial on PTEN? I have not heard of it before. How does it work? Sounds like there's not a way to test? You eat the mushrooms preventatively in case you are low in it?

PS Got your e-mail last night before I left, but I'm in IA this week. I have internet access at my MIL's house but no e-mail. Not sure why my work computer isn't working up here. I'm wondering if there is any literature out there about the vaccine trial results so far. I did a TON of research before being comfortable with herceptin. I'd like to see what has been seen so far and how much they think it will help. When you mentioned the 47% disease free rate, what stage were those people when they got the vaccine? If it was non stage IV, those rates actually don't sound very good. If it was stage IV, that is great. Where can we get a copy of those results? Thanks!

Hi Michele,
I have had no problems taking both supplements. My only problems is remembering to take the full dose every day. Great and informative discussion! Regards, Carol
PS We are very close in age, my birthdate is 11-20 63!