Complementary and integrative approaches

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Barbara, i vaguely remember seeing a recall or warning about a brand of red rice yeast extract, u may want to check it out

  • mollyann
    mollyann Member Posts: 472
    edited July 2011

    Marygrace,

    I'm sorry you have had such a hard time. Do you have a naturopath or integrative doc? It sounds like you're taking Avemar. I've heard about it but never met anybody doing it. Please tell us more about your treatment strategy. Maybe we can help.

  • macygrace
    macygrace Member Posts: 205
    edited July 2011

    Barb, I can't say I notice any difference because I think the tamoxifen is making me tired. At least thats what the onc says. Oh, and I had a lot of pain when I first started on the tamoxifen in my sternum and bones. The onc also said that is a good sign that the med is working and should only last for 3 months, which it did. Every night I wake up drenched in sweat , which made me forget to add I make a huge bowl of fruit salad. Every night I eat a big bowl of that. Here's what I put in it:

    One pineapple, one papaya, blue berries and strawberries. Oh, and fresh squeezed lemon . It cools me off.....Wink

    I feel like a dingbat from this medicine as I forgot to add I take a few ounces of Noni juice every other day.

    Luan, my pain really isn't too bad. It's pain from the cancer in my bones, I'm sure. It's just a nagging pain and it comes and goes but is worse at night. Kind of like a constant reminder of the cancer. I did forget to add in my signature line that I have 3/24 lymph nodes.

  • macygrace
    macygrace Member Posts: 205
    edited July 2011

    Mollyann,

    I haven't had a hard time at all until this stinking cancer hit me. Heck, I was in the shower the next day after each heart surgery...LOL!

    The kicker is, is I blew off doctors for a few years to take care of my uncle who had bladder cancer. We didn't want him in a nursing home so my sister, I and my aunt took care of him at his home and doctors ect. He needed 2 people there at all times as he was in bad shape. I slept over on weekends to give the other 2 a break and relieved one of them each and every afternoon.

    The only hard time I'm having is accepting this stinking cancer. I guess the shock hasn't worn off.

    Luan, was it you who posted not to drink pomegrante juice?

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited July 2011

    Luan, thanks for the info. Apparently it was in 2007 that three product were recalled. I am sure mine is OK since they are not by any of those makers.

    Red Yeast Rice and Red Yeast Rice/Policosonal Complex, sold by Swanson Healthcare Products, Inc. and manufactured by Nature's Value Inc. and Kabco Inc., respectively.

        * Cholestrix, sold by Suburst Biorganics.

    Products Contain Lovastatin

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    MacyGrace, welcome to the dingbat club ! LoL



    Re pomegranate, i only transcribed the most pertinent info i found in that book, except for soya, which is a whole chapter. I would not think that there is a brand of fruit juice out there that isn,t almost pure sugar, so would not worry too much about it. When i can afford it, i like the r.w. knydsen brand. got a bottle of the black cherry juice, plain, not concentrated, no added sugar, which i got on sale. they have a higher grade juice, more expansive, but very hard to drink straight, i add it to my smoothies. There,s a thread going around about papaya, i tried to find the leaves to no avail, so got a supplement containing leaves (where the magic resides) and fruit pulp

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    MaryGrace - I want to add a welcome.  I think you and i posted at the same time, so I had not read your post until now. 

    Hang in there -you indeed are a fighter, and have already proven that.  I'm sure you have been to the stage IV board - there is a lot of great info there.  There is a woman Jeninmichigan I think that does a  lot with alt. and conventional for stage IV.

    Your fruit salad sounds great!  I live in the northwest and we are having a very cool summer.  I think I am the only person that doesn't mind - nothing like hot flashes in the summer!

  • macygrace
    macygrace Member Posts: 205
    edited July 2011

    Thanks Luan!

    I bought some pomegrante concentrate that you add water to. There's just a little sugar in it but I thought it wasn't good to drink if you're ER+.

    I've read papaya is very good for you but I don't like the taste nor the smell. Ever smell that stuff? Thats why I make the fruit salad. It hides the taste.

    My mom is into all this stuff and has been buying the Avemar and Noni Juice for me. I don't have a natural path...I got mom!

    My mom is even taking me to see someone who pratices bio energy. I do it for her...mom...Innocent

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    MacyGrace, have you noticed the thread on the Budwig protocol ? There,s another protocol also mentioned on that thread that i want to look up

  • macygrace
    macygrace Member Posts: 205
    edited July 2011

    Thanks you so much Aprilgirl!

    I will look more into jenn from michigan and what she has to say.

    Feel free to add what you want to the fruit salad. I'm VERY close to Chicago, even though I'm from Indiana. Even though I was born in Chicago, I've lived most of my life just over the border.

    Wanna hear a good one? I had my tonisils out when I was 18. Ten years later one grew back. Surprised I kept getting step throat and with the bad heart and all I had to get the little bugger removed...again. The doctor couldn't believe it and asked what I wanted to do. I said:

    Snippity do dah,

    Snippity ey....My oh, my it will be a wonderful day!

    Had the little bugger removed and was off to Pepe's Taco's for lunch! LOL

  • macygrace
    macygrace Member Posts: 205
    edited July 2011

    Luan,

    I don't know what you're talking about. Do you have a link?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Macygrace, lol, am pretty conservative girl, ain,t tried the papaya, am very sensitive to smells, so i better not....once bought a pomegranate, did not know quite what to do with it...the stores ate full of all kinds of exotic fruits, yet one can hardly find oranges and decent bananas, lol I am really glad you have your mom looking out for you, everyone needs a guardian angel in such trying times



    I have question for everyone, has anyone established whether it is better to eat fruits not quite ripe, where i would think there are more enzymes, or to eat them more ripe,

  • mollyann
    mollyann Member Posts: 472
    edited July 2011

    Marygrace,

    You were hit by a train, had car accidents, a heart problem and had a tonsil grow back? Went to Pepes for lunch?? You are a force of nature!

    We will have to call you Iron Marygrace.

    You really gooooooo, girl !!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Wow, tonsil grew back, we don,t want to know what you did to obtain such a result....lol



    Am on phone, maybe a kind sister can provide you with the link for the budwig thread, it must be on page 4 or 5 by now, wild guess..

  • macygrace
    macygrace Member Posts: 205
    edited July 2011

    Luan,

    I found it and will read up on it.

    And to Mollyann, a big thanks. I always called myself the cat with nine lives. Gotta go make dinner.

  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Me too Macy, I was born in a car, had meningitis at 3 months old in 1960, rolled  a car on black ice, got hit by a semi carrying gas propane tanks who ran a stop sign at the side of the freeway when I was going 55 mph, actually married a con man,  the list goes on and on. Just count my lucky stars everyday that I am even here.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited July 2011

    Wow, Merilee and Macy. You guys have been through the wringer. Hugs for you both!

  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Thanks, I like hugs.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited July 2011

    I figure the Arimidex is working because of how many hot flushes I get :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Wow Marilee, we should start a club for the "lucky dingbats" Lol Edited to add Bear hugzzzz

    Sherry, were you on Tamox, then switched ? Which did u experience the less SEs with ? How long can u take the AIs for? Congrats on the 7 years out !! ;))

  • mscal02
    mscal02 Member Posts: 522
    edited July 2011

    So many oncolgist have different opinions. My oncologist told me that flaxseed is okay to take.

  • mollyann
    mollyann Member Posts: 472
    edited July 2011

    Britchick,

    Even if the theoretical action of these drugs is to (Tamoxifen) block the estrogen on the receptor sites in the breast or alternatively by (AIs)  poisoning an enzyme to prevent aromatization, there must be some downstream evidence in the blood or urine that these actions are taking place and how efficiently.

    There must be less estrogen or estrogen metabolites in the blood if the action of the receptors is affected.  There has to be some biochemical evidence. Where is it? It is completely unscientific not to have a measuring gauge for the absorption or efficacy of these drugs.

    The literature says the action of both these drugs is poorly understood. And the evidence certainly isn't cast in stone as some would have you believe. Unfortunately, many have invested in these drugs without knowing the overall survival value is minimal. I understand this because even 1% overall survival value is enough for may. But it must be understood that if a drug has a 5% overall survival value, that means there is a 95% chance it won't work. That has to be weighed againt quality of life issues.

    We all make different decisions for different reasons and support each other whatever our sisters here do.

  • mollyann
    mollyann Member Posts: 472
    edited July 2011

    As far as fluctuation of levels premenopausally, this is easily addressed by testing the estrogen or other hormones at the same time in the cycle for a few months running. The variation of estrogen is not going to vary that much if taken on days 11-12.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    I would ask my onco about the stats, but i don,t really care for them, and i,m sure he,d answer again " We don,t know" - just can,t get over what one of the residents told me during my hospital visit: while we are on chemo, a pregnant woman cannot even touch us for fear of harming the foetus....i,m just stunned

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    I don,t really care to know about stats and have never asked my onc coz he would most likely answer again the proverbial "we don,t know ". i still can,t believe what one of the residents told me when i visited the hospital earlier this week: while we are on chemo, a pregnant woman cannot even touch us for fear of harming the foetus, i,m just stunned.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Toby, i would think that seeds would keep a very long time, God knows how long some of the stuff we buy has been on the shelves. Most things have an expiry date, but some others like spices don,t

  • Alpal
    Alpal Member Posts: 1,785
    edited July 2011

    Luan - I can't believe some doc told you that about pregnant women. There have been a lot of pregnant women on this board who had chemo during pregnancy and delivered healthy babies. I seem to remember they had to wait until second trimester. I'll see if I can find some posts to support this.

  • Alpal
    Alpal Member Posts: 1,785
    edited July 2011

    Actually, one of them just posted tonight. Look at the thread named "No Cancer Here".

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Britchick - my onc. checks my estradiol level to ensure that I am still in menopause.  Chemo put me into menopause (chemopause) but I stayed there!  She has had the odd case where ovaries "bounce" back but as it's been 3 years, it's doubtful.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Are you telling me that residents feed on urban legends ? That,s almost as scary !

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