Survivors who had chemo etc and are into Complementary medicine
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pip57 what is FEC100? I'll try anything at this time.
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Kira - FEC100 is chemo
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Oh well that explains my clearing up only the TC did it for me. Wish it had lasted thought, I guess if I had finished chemo I would be skin clear but dead.
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Yeah, it's not a tx that you really want for psoriasis. However, when I was in my 20's, I did take methotrexate. It worked quite well. I had to have blood tests every 6 weeks and liver biopsy annually. I know I would never do that now, knowing what I know. At the time though, it was a blessing!
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Someone asked earlier about gluten free mixes that don't contain potato starch. Namaste Foods makes a wonderful line of products that are gluten free, potato starch free and free of many other allergens. I've tried and like their brownies. Their Perfect Flour Blend already has xanthan gum in it, which is an expensive ingredient if you have to buy it separately.
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River_Rat, That is interesting about going gluten free. I have just been working on it. I have noticed with taking the Femara getting the gluten out of my diet has helped with the SE's of the Al's. It has been hard to follow it though because I love my bread. Today I went to the health food store and bought some gluten free baking flour. We will se what happens now that I can have my bread fix without breaking the rules. I will have to see if there is potato starch in it though. I thought potatoes were ok, but I guess not.
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It was the Crazy Sexy Cancer girl that inspired the high colonic suggestion from friends. I guess the theory is that we don't naturally complete evacuate our bowels so pumping water into the entire colon to flush it is supposed to remove the "sludge of toxins" left behind...tehehehee "behind". Anywho, I don't think I'm brave enough to have something stuck into my butt and have someone massage my stomach. I was just curious if anyone else considered this crappy ritual.
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GF -- There must be a LOT of people who are into it, because my healthfood store has all those "cleansing" products front and centre! I've found that fresh fruits and veggies, nuts and of course prunes, work extremely well!
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I think I'll just wait and cleanse when it's time for my next colonoscopy.
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Re cleansing...I think that sometimes we try to be too helpful to our bodily functions. I just can't envision the cave men giving each other colonic cleanses.
Re psoriasis...I haven't consciously tried to go gluten free but my diet tends to towards it with the way I eat now. And, as I mentioned earlier, my psoriasis and the arthritis have been good lately. I thought it was due to the low inflammatory foods and supplements I have been using.
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Kira, I'm not sure if potato starch is that bad. My daughter has a sensitivity to it, but I use it when she's not going to be visiting. Somebody upthread mentioned having a problem with it though.
For packaged breads I've found Udi's products to be the best. I like their breads and their blueberry muffins. They also have hamburger and hot dog buns now that are supposed to be very good but they're out of stock everywhere and I'm not a big hamburger and hot dog eater so there's only been two times that I would've have used a bun but I just used the bread, which would be sloppy if you were using a lot of toppings.
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I will be looking for Udi's products then. I don't use buns much, but it's nice to have them around when needed. I know my local health food store has quite a variety of items. I'm glad I went there today, as things are sparse in the regular supermarket stores.
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just throwing in my cheers for Claire on her amazing bike ride - you go, lady! love it. can't wait to hear the stories.
so many great ideas on this thread.
continuing the chemo-skin connection: i've had skin problems for always: cystic acne in adolescence (thank you, God, for Accutane!) and then rosacea. During chemo, my skin looked like I was getting facials weekly - no exaggeration! I positively glowed. I had my first blemish a few weeks ago and thought, sh#@, I need some Adriamycin again! (sick humor, but you all know what i mean)
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Oh how I remember those acne days. For me it was long before Accutane. My son on the other hand is so thankful for it as well.
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Elmcity I was on Accutane 3 times over a ten year period. People don't believe me when I tell them I had really bad acne. Not just on my face but upper arms too.
I have really nice skin now but I also have Rosacea. Was diagnosed months before my cancer diagnosis. I use Metrogel once a day. No break outs but my nose is just a little red. If you didn't know I had Rocacea you won't even notice it.
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Great thread!! I have been taking supplements for a couple of years (lots of them). I also eat red meat rarely and only organic, only organic chicken, veggies and fruits. If I have to peel it I don't buy organic.I do drink green tea, try to limit eating sweet stuff because sugar feeds cancer. I also do dragon boating twice a week and walk with my doggies. I see a naturopath who specializes in cancer and he put me on these (I take most of them 2-3 x a day)-
I-3-C, green tea capsules, liver caps (milk thistle with alpha lipoic acid), 3000 mg vit C, B100 caps, multivit, vit D, calcium, reishi/mushroom immune start caps, grapeseed caps, CoQ10 (good for heart too, I take 300 mg day) quercetin (which acts like tamoxifen), vitamin E10, and wild samon fish oil complex....i feel slightly ridiculous going around with a small suitcase of supplements, but if it helps to keep me stay well I'll do it. I also take 3 mg of melatonin at night.
I can't take tamoxifen or AI's because I had reactions to them. Apparently quercetin and grapeseed are like earlier tamoxifen w/o the side effects. The I3C helps balance estrogens.
I'd like to hear more about what other women are doing.
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Hello tuckertwo,
Just looked up Quercetin thanks to your post, didn't know about it before!
Would your doctors have you on Tamoxifen or an AI when you're ER-? I thought it was recommended only for + patients?
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I had just noticed it was D2 and called Medco to ask why D2 and not D3 like I was suppose to have. Medco said D2 was plant based and D3 was from the sun. On my CLL forum they all take D3 Is this correct D2 is the same as D3?
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Vicki, it is my understanding that D3 is better but sometimes doctors will Rx D2 in large doses to help quickly get the D level up. I take 2000 iu of D3.
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Vicki: some reports have suggested that D2 is not as effective as D3 in raising serum Vitamin D levels. D2 is available by Rx only whereas D3 is available over the counter. My Vitamin D level was 18 ng/ml when I was first tested a year and a half ago. It's now up to 57 ng/ml after supplementation with D3. I was taking 4,000 IU/day. I'm now taking 2,000 IU/day for the summer months.
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tuckertwo thanks for the information
someone mention the Namaste Foods they are very good, I have used them. Also the best way for bread is to make it at home for gluten free. I do not care for the store bought ones. I have a bread machine and make my own. I can set it so it is done when I get home from work. It does not keep well though.
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Sherryc
I never thought of using my bread machine for gluten free bread! SO silly of me. It's sitting in a box on the corner of my kitchen. My machine bread books are all for gluten stuff - will now go online to find recipes for machinei for my gluten free flour! Just never, never thought of it. Can hear the voice in my head laughing ( with me) about this...thank you SO much!
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Caerus-sunflowers-you are welcome LOL. If you find some of the cookbooks that you really like they will have bread recipes in them, and making from scratch is much cheaper. The 1,000 gluten free cookbook that I like has recipes. Most of the recipes that they use call for a Sorgum Flour mixture which they have the mixture in the cookbook. I order the Sorgum Flour from Authentic Foods. It is higher in protein so for those on a vegan diet it is a good source of protein. I notice the difference when I make the pancakes. They really stick with you for hours and you are not hungry like with regular pancakes.
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Fingers crossed the Health Food Co-op in Northampton has Sorgum flour! I buy it in bulk, and I've just always gone to teh bin label gluten free baking flour! Pancakes...oh, yum.
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health food Co-op that sounds intetresting how does it work?
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Hi, Sherry
http://rivervalleymarket.coop/
There was also one in Bethesda MD. I think it was just called The Bethesda Co-op. I get my bulk things there - nuts, dried fruits (sulfur free), flour, herbs, tea, oats, POPCORN
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Hi everyone!
Thanks for the good wishes, and yes, I got to Portland. My friend and I had quite the adventure including indoor camping which I don't recommend. Tent next time!
Plus, I may invest in a much thicker air mattress than the one I borrowed. Didn't do a lot on a hard floor with my sore glutes.
GU gel wins over Cliff stuff which they gave out as samples. That and Accelerade saw me through. Bloated today from all the electrolytes, but that is the norm, as takes a while for my body to readjust. Much better than cramping which is no fun at all.
This is my FIFTH Seattle-to-Portland, including the one I did last year. A real measure of how much stronger I am than a year ago, or even my first one. I can't believe how much stronger I am as a cyclist now than I was five years ago, prior to my move to Seattle.
On co-ops: there is a major one in Seattle, which is now much like a regular grocery store. Members get a discount. If I lived closer, I would belong. I shop there sometimes, and amazing how far these places have come.
Anyway, time to make a couple of phone calls, now that I am almost coherent. Feel depleted, and not like moving around that much. And of course a bit smug.
Thanks again for all the good wishes. - Claire
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Congrats, Claire. Great job!
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Claire you are such an inspiration. Congrats.
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Claire you rock!!!!!!!!!!!!
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