TRIPLE POSITIVE GROUP

Since we are on the topic of supplements, I wanted to share the following with you all.  I wanted to find out how much the dosage is for the trial on using acetyl-L-carnitine to try to prevent neuropathy. ...it's not listed anywhere I could find on the trial page.   I've heard from women here on bco that they've taken 500 mg a day.   Well, I found out...it's 1000 mg three times a day in the trial.  Wowie, that's a lot! I would never have taken that much...but...since it's a clinical trial, Phase 3, I'm thinking...they must think it is safe enough?  (BTW, my onc is ok with it.)  Pondering...

Supposed to take it for 24 weeks.  

Results of the trial will be presented at ASCO in June this year.  Anxious to see them!  

wow lots to catch up on!!! good stuff!!!

I was ER (100%)PR (97%) Estrogen Queen!!!! I hope the Anastrozole is doing what it is suppose to be doing!!!!   My joints are telling me so..  Love the pic Fluff!!! your bangs are longer than mine!!!!

I have been taking only 1 mg of Biotin a day.  No wonder my nails are like tissue paper.

Milk Thistle....should we take this? Anyone?

I am using a product called " Green Vibrance " it has alot of green stuff in it and probiotics. I usually suffer from the big "C" but this has regulated me wonderfully. I did get it checked with my MO and he was fine with it.

Does anyone take or thought of taking the following? Maitake extract and  Ligans powder? I was told by my uncle (an herbalist) to take the above. Not sure, not much research on this stuff. Mostly what I can find is that these herbs have had some success in preventing return of cancer and slowing cancer cell growth. This is however disputed by other studies. Anyone heard of this?

Omaz- yes I do know that, but my MO does not use Tamoxifen for post-menopausal pts. I'm not pushing the issue, as it is still a medicine that has side effects and I always go to the head of the class with that!

NancyJill - I'm having them, but I thought it was from the Taxotere (I'm in the middle of my TCH).  I started using GenTeal eye gel (not drops) for severe dry eye and had immediate relief.  

Moni731- did you stop taking it because of the low white blood count?  My Mom is going to get weekly treatments, so hopefully her system can tolerate it better.  Luckily, the herceptin treatment appears to have gone well.  She will try the chemo again next Thursday.  You are right, the treatment will be much shorter.  Only about an hour on the Abraxane.

TonLee-I get my curcumin from my naturopath. It's Thorne Research Meriva-500 Curcumin Phytosome. Thorne.com. 120 capsules for $52.00. I'm checking on Swanson Vitamins website to see if there is a huge price difference. I haven't noticed any side effects, however my hair fell out right after I started taking it, but my MO said that was from the chemo-LOL

laolson 18- No, I had an allergic reaction (anaphylaxis) after the 3rd infusion even though I was on immunosuppressing drugs and supervised by an immunologist! My MO said at that point she would do no more chemo or Herceptin. I had this weekly also. Hopefully, your mom will do well as most people do seem to tolerate Abraxane better.

Omaz- yeah, I know. That is why I am passing on the Tam or AI's. My Mo agrees. She's great that way, says we'll deal with whatever is next. 

Moni I think danceT was talking about complimentary not alternative. I pretty much eat right, exercise and barely drink alcohol (not that I was a big drinker in the first place nor am I full convinced that a couple of glasses of wine is an issue). I do eat lost of leafy greens and now blackberries/cranberries (antioxidants). Not really much different than before.

But you have to live too. In order to be a survivor you need to live. I had Indian food this weekend. Some of it was fried, some had ghee but I really enjoyed it. I just don't do that all the time.

Edit to add:
There is no way in hell I would give up my hot & sour soup at Sun Wah BBQ. It has tofu. I eat an egg roll too

I had a glass of wine 11 days after my 1tx. It was my wedding anniversary. Also had orange duck and muscles in white wine/cream at a French bistro. How can you eat French good without wine?

laolson18- She stopped the Herceptin because I had already had an anaphylactic reaction to that, hence the immunosuppresion in an attempt to keep going. No such luck. I did not have any neuropathy with the amount I got, however I understand that it is pretty common. I wish her luck.

Lago- hear you on the Thai food! I could eat that everyday! But since losing my gall bladder, during all this, no fried foods, which is okay as I never ate any anyway. I so agree with 'living while your alive'! If one thing this year has taught me, it's not to sweat the small things. I follow the mantra  'all things in moderation'.  Has alcohol been shown to contribute to BC? I haven't heard of this. Maybe I read it, but I don't drink, never have, so I might have skipped over it. Interesting.

Moni731- thanks for responding.  My Mom is home and so far so good.  She is just a little tired, but probably more from the Benadryl and from being up at 5am.  Thanks for the good wishes.  Hope she does well moving forward too.  I will keep you updated once next Thursday rolls around.

kayb - thanks for the insider scoop!!!!!!!  Hope it works well for me, too!  I only did 500 mg the first round - didn't have the full scoop in time...slid by without any neuropathy so far...more prepared for the next time!   Did you do the supplements every day during chemo?  And for how long afterwards?  The trial says to do it for 6 months - so was that including the chemo time?