Life on aromasin
Comments
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I truly understand cami. Can you ask your onco for a different medicine?
I do have a lot of arthritis and I don't know that isn't a result of the meds. He told me that the pills don't damage joints permanently but you know, I question everything. But to have the major pains gone...I feel human again.
when the first med was prescribed the dr made a point that i should not suffer. I should let him know and he would change the medication. I'm going to go back on the arrimidex soon anyway so I'm starting the whole deal all over again! But I really want to give that gluten free thing a try too.
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Denise - glad to hear the good news! I mentioned going gluten free to my original ONC and she acted surprised...then, my next appointment, I mentioned it again and it was like she had never heard of it before...What? I quickly learned that this ONC just didn't listen to me - fired her and go a new one that is just wonderful...
I agree, that unless there is "Scientific Proof" they won't even give us the okay on anything...However, without these boards I never would have known about this and the love and understanding of others that have been thru (and worse) what I have been thru is really priceless...Your friends can give you sympathy but they just don't have the understanding that we have on these boards and I thank BC.org for having this forum. It has helped me in so many ways since my first diagnosis almost 4 years ago. God bless...
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How can they know if the damage is permanent? The pills have only been out about 10-15 years haven't they?
I have been off Aromasin for a while and my joints don't ache as much, but my knees got rapidly worse; it hurts to get up from a chair and I can't get up at all without using my hands for support. I know I'm 77, but I was very flexible before this and now my knees are literally creaking when I bend them.
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I've cut my gluten intake in half, but can't give up my whole wheat sandwich yet. My mom and sisters went gluten free and have had all kinds of ailments go away. I think it makes a difference when I skip bread for a couple of days and when I eat more gluten than in two slices of bread, joints better or worse respectively. Should make more of an effort to find out.
I too am worrying about permanent joint damage. My pain is much less, but the joints in one ankle keep swelling. Feels like the latter stages of getting over a severe ankle sprain. I keep walking, jogging, and climbing stairs, but I'm concerned I'm causing damage by doing this. Going to ask my PCP to recommend a specialist. Not sure which one would be better, sports med dr or someone who is familiar with arthritis and similar problems.
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Camillegal - have seen a neurologist for your BC shoulder issue, you might have radiation induced brachial plexopathy, they can do some things to help that, or at least slow down the issues.
Sounds like I need to go gluten free - I've noticed that my pain increases with "white" flour, so maybe getting rid of all gluten would help - just gotta do it!
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Really interesting discussion about gluten free. I've been eating low carb for years. The only kind of bread I eat is whole grain, and that rarely. I do eat low carb pasta, but don't know how much gluten that has. Anyway, I'm now wondering if my eating habits may be part of the reason why I have so few, and no serious, SEs on Aromasin.
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My sister was doing low carb for years eating a low carb wrap for sandwiches. Turns out it was really high in gluten, so you may want to investigate this. Also many of the ready made low gluten products are high carb or not particularly tasty. It's important to do your research and be prepared to make some food from scratch. This is why I've not switched breads, the low gluten ones I've tried taste nasty.
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Thanks doxie. I eat any kind of bread or pasta rarely. When I do I make sure it has low net carbs. What carbs I injest I try to get from fruit and vegetables. I have kept my weight stable with this formula, even while on Aromasin, although it is definitely more of a struggle now. Never have eaten low gluten bread, and now don't think I will!
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Gluten is interwoven is so many things, it was very hard at first...I agree, the GF bread are just nasty...The only one I have found to be tolerable, and only toasted, is the UDI whole grain GF bread - usually in the frozen food case. I've tried a lot of the muffins, pancake mixes and most of them are really terrible...For pasta I like the corn based ones, the brown rice turns into mush...For pancakes I use GF Bisquick , honestly, if you didn't know it was GF you'd never know...Oatmeal is okay, so is rice and quinoa...But gluten hides in stupid stuff like Twizzlers...First ingreadient is wheat! Most beer is off limits, there are a few GF - you have to "aquire" a taste for those...However, if liquor has been distilled like Vodka or rum it doesn't contain gluten...Most soy sauce has gluten - there are a few GF ones that are good. Rule of thumb: Wheat, rye and barley contain gluten...now, if I ingest just a bit - such as a visit to the Japanese restaurant that uses wheat type of soy sauce produces painful hands and feet the next day for me...When I remember, I bring my own GF soy sauce and order something that doesn't have soy in it, or ask to leave it out (and I'll put my own on) At least these days, being gluten free isn't the obscure dietary choice that it once was. There are so many options...and...I tell myself...it's only while I'm on this AI...At least I'm not celiac and I have to eat this way the rest of my life...Makes it more tolerable...
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Reading these posts, what amazes me, is that a dr can say "No, being gluten free will have no effect." I understand how science works. I assume there has not been a definitive study. But part of a scientific mind set is to be open minded. Why not say "We don't know". That seems to be the most honest conclusion. Keeping an open mind might lead to more people being compliant about taking their meds.
I found eating a piece of fish every day for lunch was helpful. The dr had told me to take fish oil capsules but I thought real fish might be better. Now I'm wondering if it may have been the avoidance of bread at lunch that was the real issue?
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My Onc didnt discuss diet at all - in fact she told me not to "go crazy" about food......WHA?
As far as gluten free- ive cut a LOT out of my diet - switched to RUDIs Gluten Free bread, and make veggie pasta with zucchini - super yummy and really is so pasta like without the bloating feeling after....0 -
I started on Joe Cross's Reboot Your Life diet which consist of vegetable and fruit juicing. I just started last Tues so this is my 4th day. This should put me pretty well glutton free. I don't know that I can do this forever but will try it as long as I can. So far I've lost 7# which I know is mainly water weight but haven't even been able to lose that over the past 6 months. My plans are to take it one day at a time for as long as I can and try to eat healthy when I can't juice. Glutton free sounds really interesting but I don't know if I can do it. If it is an end to this awful back pain it definitely would be worth a try. We'll see how I feel as I progress on my fruit and vegetable juicing.
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Re: Gluten Free - so I've been doing two weeks and pain has reduced 80%. The other night I was at a restaurant eating a salad and looking at those rolls the waitress brought. Of course, the devil on my shoulder talked me into eating one. HONESTLY, after just one roll, I had much more joint pain the next day.
Wonder why?? Does anyone know? Trying to find this out!!
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Ever since reading these reports I have been absolutely craving carbs! Forbidden gluten. But I have been in a lot of pain! Have to get a grip! Today!
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Cami, I'm wondering if you should try going off of gluten before going off of aromasin? A lot of my pain is still there after days of carb binging!
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How are you cami? I've been thinking of you,
My pains came back fiercely yesterday, couldn't sleep, even thought I've been off the Aromasin for almost 2 months!
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Here's wishing everyone a Happy Mother's Day and to let you know how grateful I am that you are here though wishing none of us had to be. If you have to be here it sure is good company to be in. Again Happy Mother's Day and thank you!
Carol
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Carole I thinks it's u'r furbabies (sorry) that I love when u post.
Tim what r u talking about? All the pains came back at once. where exacrly. really bad?? WTF happened it's not aromasin, did u start any other meds yet.?
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Thanks Cami, they are my furbabies, spoiled rotten but wouldn't trade them for anything. They are my reason for getting up in the morning (literally, nature always calls).
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Rose R, thank you so much for your post. I too am worried about the effects of the aromatase inhibitors on degenerative brain disorders and it made me feel better to know that your memory problems went away when you finished the five years. I have been told to stay on Aromasin for the rest of my life (both my original and two recurrences were ER postivie) but since BOTH my parents died of degenerative brain disorders (Picks and Lewy Body: Alzheimer's is just one of many diseases) I think I too will stop after five years this time. I am in my early sixties and the older I get, the scarier brain disorders become! I have been unable to find any research on the effects of aromatase inhibitors on degenerative brain disorders and get poo pooed if I ask.
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No, i haven't started anything new. Yesterday it was suddenly so bad in my legs and back it was hard to walk again, hard to sleep, hard to sit. The only thing it can think of is that i had a lot of carbs the day before. No carbs yesterday and i felt a lot better. Maybe it is the gluten? I dont know what it is but it's awful.
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Tim I wish we had answers, of course u know about my back and that is not reversible and it went from moderat to severe in 3 months---so I'm taking aromasin everyother day and then I'll stop-after all I paid for them LOL At this point I don't know how it will help they also said my arthritis was moderat now it's severe too. WTF All I can think is the med did all that in a short time, cuz when I started all this I had no problems with my bones or back just some arthritis and I also think the chemo did it's damage too and rads--so we're in this kind of limbo I think.
Arbojenn don't forget if u had chemo that's a brain reaction just with that --u can have chemo brain for any amout of time, they're finding that out now--well recently--they didn't even know about that a few yrs. ago. This stupid disease doesn't respect any part of u. It's horrible and it just keeps on going for alot of us.
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I watched a Living Beyond Breast Cancer seminar (not sure which one I watched)
http://www.lbbc.org/Event-Archive/2012-02-25-Chemobrain/(language)/eng-US
They said to try Lumosity (http://www.lumosity.com) , which helps you regain cognitive function. I did get a membership, and when I do it consistently, I find that it helps.
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Linda I saw that advertized on TV and people are starting to talk about it more and more, so it might be a good idea.
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I have done Lumosity since Oct., 2012. I went from total fuzz brain to
my old, wonderful brain!! IT WORKS!!
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Wow....I also have been on tamoxifen for almost two years now. I also take Effexor. I've never had an adverse affects from the Tamoxifen. My bc was stage 1, very small. Had a lumpectomy and radiation. My doctor wants to put me on the arimidex soon, but after what I've read about it, I don't think I will do it. When I was diagnosed with bc, I had been on a low dose birth control pill for about 3 yrs to slow up heavy menstrual bleeding. I'm convinced after reading many books, etc., that the reason I got the cancer in the first place was because I was taking the pill at age 48-50. I'm now 52. No one at the gyn office seemed to think it was a bad idea for me to take the pill for bleeding prevention. My body probably had way too much estrogen and not enough progesterone to keep a balance. Tamoxifen is a scarry drug. Although I have had no bad effects from it, if I don't get a reoccurence of bc, I could end up with some other cancer. Plus my eyes are getting a thin layer of cataracts from the drug (and aging). Thinking I might go with natural choices and risk it. If I get it back, I'll just have to deal with it. I don't want to feel like an 85 yr old and I already have arthritis!
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That's how I feel about it too Denise-G, and when I don't do it for a while, I seem to go backwards, but it doesn't take long to catch back up.
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bnowak - the studies do show that taking and AI after tamoxifen really does decrease your risk of recurrence even more, and most women have little to no side effects. Check out the studies, ask your onc, etc.... You might one of those that breezes through it. But also, you can ask your MO how much it decreases your risk of recurrence, that should help you in making the decision.
I worry sometimes that when I (and others) complain on these forums about side effects that people get the idea that everyone has the problems, but in reality, we with the SE's are actually the minority.
Good luck with your decision.
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I had very heavy period and didn't go through menopause until 59! I was afraid to take any kind of pill, never talked to the dr about my heavy bleeding.
I'm also sure it was unopposed estrogen, much too much of it. And I'm overweight too...more estrogen. I got the cancer within two years of menopause.
I always prefer the natural way but it has led me to bc so I have to try to take the pills, much as I detest them.
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