Arimidex - Coping with the SE's
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Thanks for the input on soy-I used to use soy milk, now I use almond milk. I gave up meat, and just want to know I can have soy a couple times a week.
Have a nice weekend!
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Holy Cow, I must have mistakenly hit the 'Remove from My Favorite Topics' thing by mistake the other day....harder to keep track of things with the new format, I think. Welcome new people and 'hi' to all!
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I'm noticing my skin getting all sorts of weird patches. Do you think this is the result of AIs? I'm starting to think I need to see a dermatologist more than an oncologist. I have had a basal cell on my face in the past (long time ago). These don't look like that did, but thick places and darker places. Hey, I want my reward for all that sunscreen.
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Welcome back ruthbru LOL
Wren...wouldn't hurt to have it looked at!
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Wren-have it checked out, and keep wearing that sunscreen!
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Wren, I have started to see my derm. on a regular basis again. I too had basil cell (on my face) years ago, but during rads a mole by my sen node scar became very irritated so my RO recommended it. I saw derm during rads and will see him again in Sept. He wants to keep a close eye on it for awhile b/c of the rads. Better to keep up on all this stuff then let it get to far ahead of us.
BTW, I was part of a "Sister Study". My sister had BC and this was a study of the "healthy" sister. They came to my house and did blood work and there was a huge questionnaire about environmental stuff and nutritional stuff. They took dust from the top of my door frames to study. I haven't heard from them in a couple of years, so I wonder what it all meant. They usually send me an on line survey once in a while to check up on me. Of course now that I have BC myself it changes the outcome. It will be interesting to talk to them again.
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macatacmv,Did you let the sister study know of your diagnosis? I am part of that study also and when I let them know they sent me lots of information and have been keeping track of me. They also sent a request to obtain my records and a tissue sample from the hospital to continue their research.
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ptdreamers, hey what a good idea. I just went to the website and emailed them.
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O.K., here is a question for you all. I have 3 more pills to take to finish my 5 years on Arimidex. My oncologist gave me one more box when he wrote my prescription. So I could take that one more box, 30 days or just finish by the end of this week. Part of me wants to finish after 5 years, another part figures why not just take the other month. I am moving back to the U.S. I have within the past month packed 20 years of my life up, sent boxes with shippers, finished with my 22 year job, am in the process of packing some suitcases for the flight and mailing some paperwork. I applied and interviewed for a job and I got it! All during this same time period. It has been a roller coaster of a ride for me for the past 6 months. I am starting a completely new chapter in my life. So do I just finish with the big A this week or take the next box for safe-keeping, if you know what I mean. I am, you can imagine, a bit stressed. XXOO
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McGaffey- congratulations on beginning a new life. At this point no one really knows the ideal amount of time for taking an AI. But after 5 years, I can't imagine that 30 days more or less is going to make too much of a difference. If the box was already in my house then I would probably take them. I hate to waste anything, just ask my DH. But if you really need or want a ceremonial ending to this part of your life then find a ceremonial way to dispose of the pills. That's MHO. My very best wishes for this new chapter.
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mcgaffey - Congrats on all the great new things in your life - that's very exciting and scary and HEALTHY! Regarding the pills.....I am always one to want things both ways so I would have a celebratory and symbolic day off after the "official" last Arimidex. Then I would go ahead and take the extra box instead of throwing it away. But, I'm not right in the head so don't mind me
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Congratulations on the new chapter, job, everything! Gosh, I'd probably take it if it were sitting there looking at me, just for luck..... I am right behind you...end of August. If you don't want the pills, send them to me and I will take them because I am nervous about being done! 0
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You have some great ideas...Ruth, I will not throw them out and if I decide to get rid of them I will send them on to you! Don't they have some new routine where you stop and then start and then stop and then start. Dobie, having some sort of "celebration" sounds good to me. Tina, I am not right either. Anyway, I guess I am scared in a way. But not too scared. In fact I think I need to get over it and move on.
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Well, at least we haven't lost our senses of humor, which I think is a quite remarkable achievement in its self!
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McGaffrey....just catching up as was out yesterday playing hookey which was a cycling/winetasting excursion with two 20-something ladies. Talk about having a fun time! Lots of laughs, and having to cycle 14 miles back is a great way of curtailing alcohol consumption. We shared tastes and had a blast.
Wanted to wish you the best of luck in your new career. Wow, and I do understand these changes! They are motivating and energizing, even if a bit scary. That is how you stretch yourself and grow.
I am also entering a new phase of my own career. Finally, a banner year as things I worked on last year take shape. Lots of successes and a chance to do new and challenging things. Finding the same in my personal life too. (See hookey day above.)
I was laughing on Sunday as I got dressed for church. Usually, it's the 7:30 AM service which I attend in spandex more often than not as off to some cycling event. But Sunday was the wedding of two members of the congregation at the 11:15 service with choir and incense. I put on my "outfit" and said NO. So I put together something more in keeping with my new look. Wore some of my new eBay purchases and fixed up one of my hats (wedding = excuse to wear hat). I looked fabulous. A measure of how I am moving forward.
I would expect similar on your end. Just let it happen.
Wedding was touching as a couple of English professors. One is a well-known poet and the husband is retired. Some of the poet's students came. Reception downstairs with cake and champagne.
A bit sore this AM, but more from cycling. (I KNOW those butt sores aren't due to Arimidex.) Very funny was that one of the ladies loved those trail bumps when starting out. She was riding a mountain bike which has better balance on them. However, that was not what she was saying towards the end of the ride!
I need to get to work as "to do" list has been growing while screwing off. A couple of things to get out today.
But wanted to say "congrats" first. Now, go get 'em! - Claire
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Thanks, Claire. Yep, it's about time! One more pill and I leave in a week.
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Keep us in the loop!
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Hit the 3 month mark and it's like someone flipped the se switch. Debating (with myself) going off for a while so I can enjoy family trip to Ireland in a couple weeks.
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spunky...I hear ya! I am into my 5th month and seem to have constant aches....hips to ankles. I am trying to hang in there but if I can't hack it, I will call my MO and tell him I need a break. How the heck can you exercise when you can't even walk very far? If I go from the parking lot to WalMart and shop for 15 minutes, I barely make it back to the car. I find this so very frustrating. The best thing is knowing it's not just me! WHAT THE HELL???
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Hi, ladies. I'm understanding your frustration with constant se's. I have had chronic pain (severe) in my low back and hips for 11 years. The process of dealing with it and finally accepting it was very, very hard - lots of grief and loss for my "old self." Now I am on disability and take pain meds every day, and my life is so different from what I imagined it would be.
Now, I am on my second AI. After 2 months on anastrozole, I was in so much pain all over (on top of my "regular" pain) so I took a 2 week break and started on letrozole (femara). The two weeks off I felt so good, and so far this new AI doesn't seem to be as bad. I'm at the 5 week mark, keeping my fingers crossed!
My thoughts are that maybe it would be easier to deal with AI side effects if we took regular breaks. I wonder if that might be an option that is discussed and recommended in the future, because we are the guinea pigs now. I don't think AI's have been around for longer than 5 or 6 years. Especially, I wonder if it would be ok to take a break for a couple weeks if we have a trip or family reunion or some big event coming up. We who suffer from a reduced QOL need to speak up to our MO's. Would it be detrimental to our overall recurrence rate to take a 2-week break once or twice a year? I don't know, what do you ladies think? Of course, I would never do it without the approval of my MO. But who knows, maybe it will be standard of care down the road.
In the meantime, we can make changes to our daily routines that help us live with our reduced energy and ability. Like the changes I have made to my life to accommodate the pain. My trips to Wal-Mart are well-planned and I keep them as short as possible. I take breaks often without feeling guilty. If there is a product or tool that makes housecleaning, cooking, or gardening easier for me, I get it (within reason, I have a very tight budget). And, most important, I have lowered my standards and expectations for almost everything. As a perfectionist, I have lots of room here for change! Much of my energy is spent trying to do things I used to do, when nobody else really notices or cares. So, now I try to save my energy to smile and enjoy the people around me, and that is what really matters in the end. These changes aren't easy, but very worthwhile, I think.
I also try to maintain a positive outlook and practice gratitude for the many good things in my life. I try not to focus on what I can't do or what I don't have, and look for the beauty in the little details of my days. I make it a priority to take care of myself. Going through cancer has made this easier for me.
OK, so I'll get off my soap box now. Here's to a safe and fun holiday week for everyone!!!
Barb
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Re the aspirin, my onc has me on a baby aspirin 3x a week, but not as a pain reliever. Naproxen (Aleve) has been the most effective relief from the achy legs, knees & ankles that are still hanging on a bit. She also told me to watch out for soy based supplements.
Be well!
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Well, most of us "old timers" know the "3 month experience" - my doc was actually ANGRY I didn't let them know immediately of my PAIN, numb hands, unable to sleep cuz of pain/numbness - never knew the two could happen together. ORDERED ME to take a 6 week break - physiotherapy, wrist splints, we've talked about this -
Most docs know about this timing - please, PLEASE, check with the doc who prescribed the AI. Don't take action by yourself, without notifiying your doc. Know that's pretty strong advice, but honestly, the only way our docs can LEARN about what's happening to all of us is if we TELL them.
Like ruthbru, and many others, I'm approaching the end of year 5, and hope to be able to continue for several more years on one of the AI's - have been on Arimidex the whole time. FEEL GOOD. Yes, sometimes more tired than I expect to feel, but that's a teeny, weeeeeny, little price for BEING HERE, and healthy.
Good luck to all.
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My question is this: Has anyone who is HER2+ ever taken a 2 or 4 or 6 week break from Arimidex? Or is is only the gals that aren't that are given a rest of it on occasion?
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Side effects and dosage
Hi all
Let me begin by saying I have been completely opposed to doing hormonal therapy due to several other health issues that I have . Because of significant osteopenia edging right into osteoporosis ( I'm 54 and went thru meno at 41) I have been completely opposed to the Als. I have been researching alt. meds and am looking very closely at Activin GSE. Not very confident it will do much, but pretty darn sure it wont give me a 4th broken bone ! They have actually used it in clinicial trials so I know it's not snake oil, but of course, it could prove ineffective.
I considered tamoxifen, but I am at INCR risk for blood clots.
It would be easy to grab either of these drugs if I was going in healthier and I could just " give it a try" if it was QOL side effects/ no prob. The issue become incr. risks of serious side effects like pulmo embolism, stroke, osteoporosis etc ... can't really ' trial' those SEs.
In any case, I have looked at considerable amt of links claiming tamox may be of benefit at 1/4 the usual dosage with less side effects.
That said, if I were to go the route of trad. hormonals, I would much prefer Arimidex, given my post meno status. Is there anyone here that takes less than the ' usual/. standard dosage" or even has info that a half or qrtr dose has been proven efective with less risk to the bones etc ....
I would appreciate any info on this specific question.
ALSO---- arimidex for those w/out INS coverage.
http://www.arimidex.com/arimidex-direct.aspx
Hope this link helps someone.
Many thanks and Happy 4th!
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It is frustrating not to have the answers to our questions but that is where we find ourselves. I have done a lot of searching through medical sources, research and journals. There just are no studies that can tell us if AIs are as effective at different doses or if it makes any difference if we take "breaks". Heck, they don't even know the optimal amount of time we should take this drug. They tell us 5 years because they DO have some evidence that 5 years is optimal for Tamoxifen. Whether taking it for longer or shorter makes a difference: No one knows. Plenty of opinions, but no good scientific evidence.
Purple32- with your grade, tumor size and neg nodes there is no survival benefit to taking an AI or Tami- but you already know that. We have discussed this before. Even if your cancer is not likely to kill you even if it reoccurs, who wants to go through dx and tx AGAIN!
Tough darn spot we find ourselves in. I'm hoping (and praying) for more answers ASAP! But no one has them yet.
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What dosage do the ppl. here take ? If you don't mind.
Thx again.
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Anastrozole ( generic Arimidex). 1 mg per day is what I take and is the standard dose.
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Arimidex 1 mg once a day...same as dobie
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thx
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hi - i am just joining in for the first time. staring at my first bottle of generic form of arimidex. scared to take it. scared of the se. i live alone so this discussion board has been giving me courage and support. i don't believe there is a right or wrong way but i do need to take some action. today marks 2 months since surgery(bmx). thank you all for your courage.
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