TRIPLE POSITIVE GROUP
Comments
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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!
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Tonlee and Lago-you two are like herbal Anna Nicoles. I take my fair share of supplements and that's what I call myself. My naturopath highly recommends 2G of curcumin daily. He says it helps herceptin work more effectively and has cancer fighting properties.
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Thanks DT...my Onc okayed the L-Carn during chemo and I took 500-1000 a day.
Nc Beach...so true! lol I took curcumin during Rads because there was a trial or study (can't remember now) on how it helped mitigate side effects from rads....Where do you get your curcumin? Any SE?
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Hi All, My Mom just tried to do Taxol today and had an allergic reaction to the drug. They are now just attempting to give her the Herceptin treatment. The nurse said next week they will give her Abraxane, I believe. I have read that this drug will have the same effect as Taxol. The nurse said it is common for her to have a reaction from the Taxol due to the preservatives. The other drug does not have the preservatives. I also read that Abraxane seems to be more effective, but they don't give it as a first choice because it is very expensive. Anyone else have this drug?
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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.
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Hello all.
Omaz- I was sent into 'chemopause' and am now menopausal for over 1 year, so no Tamox.
Kay1963- Thank you.
Dancetrancer- Thank you for the hugs and all your info!
laolson 18- Yes, I had Abraxane x 3 before I could not have it anymore. It seemed to be easier than the first line drugs. Didn't even completely lose my hair! Did have a grade 4 neutropenia though.
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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?
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moni - Women in menopause can use tamoxifen, in fact that's all there was for post-menopausal women before the aromatase inhibitors came out. It's just that pre-menopausal women can't use the aromatase inhibitors. Menopausal - tamoxifen or AI is ok as far as I know. So you potentially could use tamoxifen.
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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!
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Anybody else had watering eyes with Tamoxifen, Herceptin and/or Effexor? It's new, and not itchy or red like from allergies. Just watery.
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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.
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moni - I don't know what other choices there are that are mainstream!0
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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.
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loalson18 - my onc at MD Anderson mentioned that Abraxane sometimes causes more peripheral neuropathy symptoms than Taxotere. I just thought you might want the heads up - not to scare you - I'd still do it if I had an allergic reaction to Tax - but to say she may want to look into supplements thought to perhaps prevent neuropathy from chemo and see if her onc is ok with that.0
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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
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NancyJill I did get it from taxotere. It could be your tear ducts are clogged. My ophthalmologist said my eyes get dry because my ducts get clogged with oil (thank taxoterrible). She recommended artificial tears but not the "get the red out" kind.0
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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.
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moni - if you are looking for alternative ideas I enjoyed reading "Waking the Warrior Goddess". I learned a bit about some complementary things I can do with my diet. There was one thing I disagreed with in the book - her viewpoint on soy. I stay away from soy - too much controversy so I just avoid it to be safe. There are also lots of cook books for cancer prevention out there. I know someone else mentioned going to a naturopath oncologist, too, but I have no clue how you find one.0
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Dancetrancer- No, I am not into alternative medicine, just attempting to placate an uncle!
I too was on the fence about soy. Recently though I read an article on Asian women that eat a lot of soy and have decreased amounts of recurrence. As I am lactose intolerant, big surprise there, I do occasionally drink soy milk. I agree with an earlier post that 'it's all a crap shoot' at this point in time. I do eat a healthy diet and do bowflex and walk 5+ miles a day. That will have to do. 0 -
Moni731 - I hope that doesn't happen to my Mom. I am surprised they stopped the herceptin treatment too. Did you have a reaction to that also? My Mom luckily did fine with that treatment. We will see what next Thurday brings....
Dancetrancer - I already gave my Mom info on vitamin supplements to lower her risk of neuropathy. She is also seeing a natural food lady, who has her on a regimen with taking some vitamins and she is going to get a foot bath every 3 or 4 days after chemo to release the toxins in her body.
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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
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Totally agree with you Lago! Love indian food, thai too! I've given up drinking while on chemo, but you can bet when I'm done I'm having a celebratory gin and tonic! You gotta live!!!
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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?
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For real lago. YUM!!!
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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.
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http://www.breastcancer.org/risk/factors/alcohol.jsp
http://www.breastcancer.org/risk/new_research/20111101b.jsp
Moni check out the above links
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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.
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Holy crap NC! $52 for 120 capsules....youch!
I'm too thrifty (read cheap) to pay that for ANY supplement...lol. I order one of my medications from Canada because it is so much cheaper! lol
Maybe I'll check out Vitamin World's curcumin...I have a coupon...
Even though my body is much less forgiving now (thanks menopause!) I agree we should enjoy our favorite foods once in a while....favorite fat foods I mean. Today we indulged in deep dish, fresh delivered pizza and bread sticks from a local pizza place.....I am so full...but it was sooooooo good. I haven't had real pizza in so long I can't remember! At least 2 years.
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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?
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Acetyl-L-Carnitine 500 mg is only $35 for 120 capsules at the Vitamin Shoppe… and till the end of this month its buy 1 get one at half off. They do this deal every April & September. Check the "read product label" No soy.
I started 500 mg after my 1st round. I had some tingling in my left hand and numb left heel. I continued to get the numb left heel but that's it. Right now it seems to be OK so it might be gone. I only seem to notice now when it's really cold or damp. I should know by Saturday since we are having a cold damp day. My NP said that if the nueropathy doesn't go away in 2 years PFC then it will not resolve. I have 9 more months for this to resolve.
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