Arimidex - Coping with the SE's

Hey Sandy...I too was adopted in Quebec and I HAVE NO RECORDS at all...it was a private adoption. I had a helleva time getting a passport. First time they accepted my baptismal certificate. After that one expired, thru my local MP I got a birth certificate of sorts. Then they changed them too...I finally have a permanent one and how they got that thru I have no idea but I am not about to ask any questions. My adopted parents wouldn't tell me anything so to this day, I have no clue about my background or any pertinent medical problems. I did inherit a blood gene that both daughters and granddaughter inherited as well. I often wonder about BC as well.

Notself...I hear ya....I did the same thing every summer at the cottage...they fogged every night almost. I was also living in Europe when Chernobyl happened. I also used to accompany my Mother to the expensive shoe store where they had an Xray machine where you stuck your feet in and hit the button. You could watch your toes wiggle and we did that for minutes on end. No one ever said a word to us to stop. Jeez how stupid were we as kids? I am surprised I didn't get BC before 68. I also wonder about wearing clothing that has been drycleaned. Just sayin'.

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!

Welcome back ruthbru LOL

Wren...wouldn't hurt to have it looked at!

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. 

ptdreamers, hey what a good idea. I just went to the website and emailed them. 

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.

Well, at least we haven't lost our senses of humor, which I think is a quite remarkable achievement in its self!

Thanks, Claire. Yep, it's about time! One more pill and I leave in a week.

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.

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 

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.

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!

What dosage do the ppl. here take ?  If you don't mind.

Thx again.

Arimidex 1 mg once a day...same as dobie