Arimidex - Coping with the SE's
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I am having fun with removing gluten from my diet. I have about 10 of the "other" flours and am working on making a good mixture that works. I hope to find one in time for my christmas baking. Boy, won't the family be getting a surprise this year. <lol>.
Seriously though, spelt is low gluten and I've found it to be better tasting than regular flour. Also, it has more nutrition, fibre and less gluten so better for those acky joints. Win, Win, Win, Win.
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LowRider, May I ask what you used for the crust? I have been trying to bake with less gluten to see if it helps.
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kira...I actually found a pie crust mix in the gluten free section of WalMart and gave it a try - the hardest part was 'cutting in' the ingredients - I sure don't have the strength built back up in my arms...LOL.
sunflowers...thanks for the title, I will be looking for it and I will be checking out the Co-op as well. This weekend, I am trying the chocolate chip cookie mix I found...let ya'll know how that turns out.
molly...it is kinda fun and I feel like a kid in a candy store when I find something...I think my neighbor that went shopping with me and I discovered gluten free Bisquick was going to just keel over from embarassment at the fuss I was making...LOL
Oh, and while my knees love me from the elimination of gluten...they are not happy with me when I fall on the ice (I didn't even look last night - but this morning, OMG - it has more colors than the fall on my back from the ice storm last week) - thankfully, the storm we are getting today is NOT being preceeded by freezing rain...whew...
Hugs all and Have a GREAT weekend!
LowRider
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I will be making a decision soon about taking Arimidex or Tamoxifen, and I was wondering about some of the SEs of Arimidex. I've heard it can raise your cholesterol, and isn't that hard on the liver as well? Any recommendations about how to control that SE? Also, is there something else you can take besides Zometa to help strengthen your bones? I thought I remember reading something about a natural mineral like strontium or something? Thanks for this thread and all the good info! I just don't know what to do sometimes...
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Hi,
I know I don't really match with this thread as I am on Tamoxifen, but I noted Marie2s post in Sept. about the symptom of difficulty breathing, shortness of breath. I am getting that with the Tamoxifen. I am in my early 40s. I have only been on T.for 2 month and am a bit worried. I notice that I feel like I have vertigo upon waking as well, could it be oxygen deprivation? I don't see my onc. very much (only had 1 appt. with her) so feel like I shouldn't call about this. Any advice would be appreciated!
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whitedove - I think you should most definitely call. Difficulty breathing & shortness of breath can indicate heart issues. Those SEs are rare, but it can happen on either Tamox or Arimidex. I just started Arimidex and have had some palpatations already- it's the same sensation when I used to have any caffeine (esp. coffee which I had to stop years ago because of the reaction). I'm wondering if I'm in the same boat with a rare reaction. I'm not overweight, no high blood pressure or high cholesterol, my EKGs are always fine - so I don't have any other heart-related risk problems.
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whitedove,
Did you draw your dove??? Isn't that zentangles? Love it ! I just took a class and bought all the materials to start after the holidays.
Teri
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whitedove,
Did you draw your dove??? Isn't that zentangles? Love it ! I just took a class and bought all the materials to start after the holidays.
Teri
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sunflower, Use a saw, what a great idea. I have the worst time cutting the winter squashes which I just love to eat. I also use the plastic "helper " things. Boy getting old is a bummer.
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Hi Ladies,
I have a question for you. I am into the third year on arimidex. I was just told that since my last bone density test last year that my newest results say I have increased osteopenia. Is anyone else in this condition and can I ask what you are doing to help the situation. Any advise would be greatly appreciated.
Karen
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Hi all,
Otter, your posts are adorable re: girl issues with mr. otter; you said you used the KY liquibeads and that they helped? (I"m sorry if that wasn't you, so many posts to catch up on)..and does anyone know if the KY sensitive Jelly is for daily moisturizing use or only for sex?
I filled the script I got from the Urologist for my near constant UTIs....the cranberry pills seems to be doing the job quite well, but I do still have this constant feeling of burning when I sit too down (so, don't sit too long, right?) he gave me Estrace cream, and after reading the SE s of that one, there is no way I'd touch it with a ten foot pole!!! I tmight give me a better quality of life, but since it is a "black box" drug, my pharmacist alerted me to it, and after reading it, I returned it. Someone on here referred to the Estring as a helpful way to put a teensy bit of estrogen back. My symptoms are from not only arimidex and an oopharextomy also. Anyone know whether the esting is a good idea? I have read that it releases a lower dose than the estrace cream. I figure that with the oopharectomy and the full hysterectomy, and the arimidex, the only place I am getting "any" E is from my bodily fat and my adrenals. Possibly, the cream would be safer for me than for someone with their ovaries, but OMG, blood clots, stroke, high blood pressure, brain hemmorage, list went on and on, including seizures.
YIKES.
Also been reading up on "rejuvination" techniques; kegels, moisturizers, a sort of weenie rehab....anyone tried this?
Sorry, (blush), Mr. Also is very healthy and loving man. (blush,blush)
xoxoxo
a
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Karen, I am. I fully expect my bones to have gotten worse.
Since I don't want to take a biophosphate (and the jury is out on Zometa so far as the standard of care), I choose to do weight bearing exercise, and take 1200 mg. calcium, 2000 mg. D and keep active for heavens' sake, whatever else you do. Apparently, pilates and yoga and tai chi have all been shown to have positive effects on bone.
"use it or lose it" must have been coined for bones and girlybits of ladies on arimidex.
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Oops! Karen, I eat 10 tiny prunes a day. There was this study done that showed improvement in bone health with doing this.
They are chock full of boron and phosphorus and magnesium, all bone builders. I'm trying it, and will let all know when I get bone scan if anything worked. It takes 6 months of prunes (and that is yes, 10-12 daily, but get the tiny ones which equals about 150 calories) to get this to work.
Work up to them, too! Begin with 3 and go slowly....you will otherwise become intimately acquainted with the toilet.
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weenie rehab....hahahaha
I bought the vaginal dilator set and have been 'going at it' for a week now. No signs of improvement yet but I will keep everyone updated (unless it's TMI!).
Lube-wise, I use either the oil-based "Yes" or coconut oil. Yes works very well but is also expensive. The coconut oil leaves a slight burny sensation but has the benefits of smelling nice, containing only coconut oil, and costing less.
E
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for bone loss there is this drug that seems to help with this..something other than fosamax and
other biphosphotates
Denosumab May Help Prevent Bone Loss Related to Use of Aromatase Inhibitors
(Posted: 09/11/2008) - Treatment with the experimental drug denosumab increased bone density in postmenopausal women taking aromatase inhibitors to prevent a recurrence of breast cancer, according to a report published online August 25, 2008, by the Journal of Clinical Oncology.0 -
Interesting study, thanks for posting the link.
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I am seeing the gyno Friday & bringing my dilator information along as a 'topic for conversation'.
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Anniealso, All of the vaginal estrogens come with the same warnings as systemic estrogen. It must be required by the FDA. Even though I don't know if I believe it, more than one Dr. has told me that there is none to little vaginal estrogen absorbed by the body other than the genital area (which is the area it is supposed to be helping). The vaginal estrogen that I think has the least amount of estrogen is Vagifem which was 25ug/dose and is now 10ug/dose. Hope this helps.
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thanks, ladies, I just had a good buddy tell me that the one to use that is the least absorbed is the Vagifem. For now, I'm staying with the moisturizers, lubes and "weenie rehab"...this involved a sort of myotherapy internally that you do yourself, kegels et al, causing more circulation in that area. (well, so wou ld sex, theoretically) ho ho.
Thank you for all the info! Anyone know of the liquibeads? Replens burns, the very private is stinging now.
I for one, certainly do not believe that none to little estrogen is absorbed. They told me that you can put the estrogen cream on anywhere and it will help. Therefore, it's in the bloodstream, not topical.
You are so right; the FDA warnings are pretty scarey, but the black box ones are for drugs that can kill you. My dr. yanked me off Serevent the minute it got one. This little tube had it, so no to Estrace for me.
I appreciate any discussion of this very much!! Where else can a bunch of bright, informed women, all with the same issues, come and chat over this type of thing? And then people volunteer their doctors input. It's a think (a pink) think tank!
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Good afternoon ladies!
I will be joining you in about 2 weeks - currently finishing up 3 years on tamoxifen. I have been following this thread since its inception (thank you Lowrider54!) and would like to know if there are any foods that would interfer with A? There are some that interfer with tamoxifen, so I'm a little curious. Thank you for all of your wonderful posts and information!
Trish
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I have been on Arimidex for over 6 years and also had Osteopena before starting it. However, my bone density tests have shown no increased bone loss (thank goodness!). I can't do any type exercise due to other medical problems so just take one Calcitrate pill daily with a couple of 400 mg. Vit D3 and a multiple vitamen with the rest of Vit D3 I need daily. My Onc says to keep doing what I am doing because the last bone test was fine. I will take the Arimidex for as long as the bones don't deteriorate badly and that seems to be the main criteria for my Onc keeping me on it. The other SEs I have learned to adjust to for the sake of my survival. Best of luck to you!
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Hi, I am a new cancer patient - I am an alternative health kind of gal, and am really struggling with taking drugs to prevent recurrence that have so many awful side effects. Arimidex is one of the ones they are recommending for me. ( I just had a lumpectomy on 11/24, and haven't started radiation yet. A new wrinkle is that I am HER 2 +, and now have to make a decision about Herceptin as well.) If there are others like me that have a general mistrust of pharmaceutical companies and their hype, and know somewhere I can get good, balanced info on these drugs, that would be a great help. I just noticed this post about Arimidex and survival rates, so that's why I asked. Thanks!
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Most people don't have horrible SE. Usually the people who are talking about it are (naturally) the ones who have more of a struggle, the rest are just out living their lives. A good thing about anti-hormonals.....if you find the SEs are bad, you can try something else or even choose to stop. I would sure try it with an open mind and see what happens; it is the best insurance to stay cancer free you can buy right now. Best of luck! Ruth
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I so agree with Ruth! It is great insurance and most women that are not having bad SEs don't post...we just pop on along.
Most of us just get kind of achey, I had some stiffness, but you know what? As Ruth, our poster girl for physical exercise found out, that helps so much!! Just keep moving! Taking arimidex is extra incentive to do something that is good for you, anyway. Perhaps it will inspire you to really get in great shape (unless you already are
)....I have found out that my D levels were low, and since supplementing with D3, I have been immeasurably improved. I'd reccomend getting a D level test going into it. Do ask your onc how much calcium, vitamin D3 and magnesium (needed for calcium absorption I just found out from my GP) you should be taking. Viactiv is good, and works v well.
Most of all, keep an open mind....think of the surgery as the actual fix, the radiation and chemo as clean up of any stray nasty cells that got missed by the surgery, and the arimidex as "insurance"....I feel very safe taking it. I was very scared to begin it too, but these lovely ladies on these boards talked me thru it. Not many differences whatsoever.
Good luck to you! Its not a club people want to join, but the silver lining is the people in it!
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don23 - You think the bottle caps are rough, for some unknown reason back last year, Arimidex decided to put those little pills in a blister pack (it could have been my pharmacy's option of packaging). There were 4 layers of that nuclear plastic to get through from the front and 3 layers of cardboard on the back. You needed a jack hammer to get to those little buggers out and when you did, they were sometimes in powder form. I complained and within a few months we were back to the traditional "can't get this darn thing open" bottle form. I'd be afraid to complain again. God knows what they'd come up with next time.
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I remember the blister packs; I think they were called 'blister packs' because you got blisters trying to break into them!
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Hello all! I am new to this thread. I had chemo first, then bmx with tissue expanders in June, then radiation. My rads ended 10/29 and I started taking the arimidex 11/9/10. The second day after taking the 2nd dose I had severe diarrhea. Nice! not! But through taking fiber I only experience that maybe one day a week.
I noticed some joint pain after a couple weeks, but I'm hoping I can manage that with exercise and ibuprofen when needed. I am taking D3, calcium, fish oil, glucosamine chondroitin which should help w the joint pain also. Will this get worse - the joint pain? I hope not! We are having very cold weather here in Ohio and it is a little worse but manageable so far.
For the past 5 days I have been experiencing fatigue. It feels like the radiation fatigue I had while on rads and for about 2 to 3 weeks after. I was feeling better, more energetic, able to do stuff, keep up with the house, appointments, looking for a job. But the past few days I'm just like UGH I have no energy! My legs feel weak and a little rubbery which is how they felt on radiation and chemo. So I don't know if this is a delayed reaction to the radiation or if this is the arimidex or what? Any ideas?
I hope it is not the arimidex!! I don't want to deal with this for 5 years! UGH! I am working out which is hard when I have no energy. Any suggestions or input will be appreciated. Thank you so much!
Jeanne
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Our blister packs in Aus. are easy to access. The front is a clear soft plastic so its easy to moosh and the back is foil so it's easy for the pill to be pushed through. Your blister pack sounds like a nightmare!
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Chrissyb - Here in the US we're all about safety and trying to get chemo brain people to only take one a day(because you may not remember if you took it without the days of the week printed on the front, that is, if you know what day it is). I'm just kidding. We know what day it is! I really think they were trying to help, but sore fingers and those darn things don't mix. By the way, I may have overstated it a bit.
jsmiley60, I've been on Arimidex for 3 years and it does get better or you get used to it. I'm not sure which is true. I still have aches and pains but not in my fingers and hands anymore. It seems to move around sometimes but nothing I can't manage. Keep up the exercise. I don't enjoy it like everyone thinks I should but I do it.
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j smiley, I think your fatigue is from the rads. Mine hit in a delayed fashion exactly two months afterwards and i was on tamoxifen which did not affect me at all.
Rest when you need to, it will pass off. Exercise helps but not when you are that tired.
I don't have any fatigue from arimidex whatsoever. However! It is important to check your thyroid levels or to get a test. Many women have thyroid issues change or occur after chemo/rads/hormone meds, it is more common than is known.
Also get your D levels checked. I was already taking D3, but tested so low they had to supplement me. Now I'm bouncing off the walls.
Armidex does bounce around. If your elbows hurt this week, don't pay it too much attention. Next week it'll be something else. It settles down a bit with time.
Good luck
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