Scared to begin Arimidex

I don't have arthritis, but I was scared to death to start Arimidex.  I was also osteopenic.  I stared at the bottle for a month before I finally said, "how will I know if I have side effects or not if I don't try it".  I did and had no side effects - until . . .  my next dexascan showed more deterioration and actual osteoporosis.  I did not want to take a bisphosphonate and I did not want osteoporosis to progress.  I wanted to stop Arimidex anyway to see if it was having an influence on my lack of hair (that didn't all return after chemotherapy).  My oncologist said she didn't like the idea of me not taking anti hormone meds and instead suggested switching to Tamoxifen.  She explained that Tamoxifen is actually good for your bones.  Neither Arimidex or Tamoxifen work if you don't have any ER+ cancer cells and I like to believe that I don't so why do I have to take either?  Well, because  . . . . just in case.  So I switched a little over a year ago.  My hair is still the same but I feel sort of good about the Tamoxifen instead of Arimidex because of the osteoporosis thing.  Before Arimidex, there was only Tamoxifen and many postmenopausal women still take Tamoxifen.  I think "they" feel the aromotase inhibitors are better, but by what percentage?  And afterall (I thought) I did everything I was supposed to and it can still come back no matter what I take or do (unlikely, but possible).  So I'm taking my Tamoxifen and worried about getting a blood clot instead of osteoporosis.  Why can't I just be 25 again!

Our diagnoses and ages are very close - I'm 66 (67 June 16 but not yet!), had Stage 1, Grade 2, ER+ PR+ breast cancer.  I did have chemotherapy because of high oncotype score.  I didn't have clear margins on tumor, but had a larger chunk of my breast removed for reduction (it was larger than the other one) at time of surgery so margins were very clear on the chunk.  There is no one size fits all in this breast cancer thing, but you have to do what feels best for you.  I'm content with my decisions, but I often wonder if I really "need" to be on Tamoxifen (or Arimidex).  I can't wait to stop it and I doubt that I'll do more than 5 years. I just don't want to.

Suzanne

jpteacher1 said:

Thank you Suzanne for your

Thank you Suzanne for your information.  I have been looking at the free samples of Arimidex that the oncologist gave me.  She said to try the month samples and see if I had any SE to Arimidex.  The cost of Arimidex is extremely high, even with my co-pay.  There are generics available, that I will go on if Arimidex works ok.  I wish I never was diagnosed with breast cancer so I wouldn't have to deal with any SE.  However, I am sure that there are many others that have struggled with this decision. 

I've been on Arimidex since August and do have some issues.  I have arthritis that has gotten worse, but have good hand specialist who is helping me.  I am more afraid to come off it than stay on it.

I had small cancers in both breasts.  After chemo I chose BMX over radiation.  I felt the chemo had done enough damage and radiation was only going to put my heart, lungs and other things at more risk.

With Arimidex I don't fear a cancer return as much as if I didn't take it.  I prefer a bit of pain with a side order of peace of mind.  This is my way of handling it, but everyone is different and also have different SE.

My heart and prayers are with you as you make your decision and continue your healing.

Sandy

jpteacher1 said:

Thank you Suzanne for your

Thank you Suzanne for your information.  I have been looking at the free samples of Arimidex that the oncologist gave me.  She said to try the month samples and see if I had any SE to Arimidex.  The cost of Arimidex is extremely high, even with my co-pay.  There are generics available, that I will go on if Arimidex works ok.  I wish I never was diagnosed with breast cancer so I wouldn't have to deal with any SE.  However, I am sure that there are many others that have struggled with this decision. 

Hi,

My first post, even though I'm been lurking for the past year.  Not sure how to post a profile pic.

Just had to respond to your Q, jpteacher.   I just started Arimidex a month ago.  I'm surprised you even have to take it, because my understanding is it's only for those of us that have had lymph node involvement and you said you had zero.  My oncologist yesterday told me when we were going over my profile that it was bascially to prevent mets in other organs other than the breast, and the risk of recurrence rates he gave me (35% with and 65% without) only applied to mets, not recurrences in the breast itself.  So i'm really confused why you need this.

Anyway, I have osteopenia (surprise, surprise) and am investigating what I need to take for that.  As far as Arimidex, it is making my arthritic joints worse.  I use my hands extensively as a court reporter and type constantly, so it doesn't help.  So far, that and a very mild nausea are the only SEs I'm having.  He says they are completely reversible once I stop the meds.

There is a new trial involving Arimidex combined with acupuncture, but I am going to try the acu on my own next week because I don't want to get randomized into the sham acu. group for 3 months before the real thing.  I just had an appt yesterday for my plantar fasciitis and had amazing results in just one treatment.   So that may be something non-drug related to try for all of you out there having joint pain.

I will post a new thread after I've had a couple treatments and let you know how it goes.

I don't blame you for your hesitation in taking this medication. Especially if you're already experiencing joint pain already. I took Arimidex for about 2 months and had to stop because I was experienceing such extreme pain. I couldn't even pick up something if I dropped it on the floor. The joint pain was excrutiating. My son said I would moan in my sleep from the pain. I started getting horrible pain in my wrist and was having a hard time picking up or even using my left hand due to the sharp pain. I made an appointment with my oncologist and told her I had to stop taking the medication. She changed me to Tomaxifin and I've been fine. I also had osteoporosis in my past and I'll be going for a bone scan in the next week. Curious to see if I'll have any effects from all the treatment. Not everyone has the bad side effects. I suggest you give it a try and if you start feeling your pain progress get ahold of your oncologist right away and change meds. I'll be praying the best for you.

Hi, and welcome. I was pescribed Arimidex a little over 2yrs ago after a double mastectomy for a rare breast cancer (secretory carcinoma). This came just 1yr after finishing treatment for Stage3b anal cancer.

I too looked at the bottle every day for several weeks and googled all the scary side effects, then finally just took a breathe and dove in!! I initially had some areas of osteopenia but a recent scan showed no worsening as of yet and I've been taking that little pill faithfully for two years now. I also take Calcium with Vit D and Alondronate to help the calcium bind to bones. I eat lots of dark green veges, and try to stay active daily. Light weight bearing exercises like walking, jumping, and lifting grand-babies helps build bone strength. My aches and pains are no worse than they were before and in fact may be less, (though I feel worse if I don't at least do some stretching). I take the pill in the evening as was suggested by someone here. If I have any complaint, it may be that I have gotten a little softer around the middle and lost some of my old lady abs lol. (I have gained about 10lbs) This may or may not be related as I have also had surgery due to the anal cancer (colostmy) along with a long time love of ice cream.

Good luck.....I will keep you in my thoughts as you move forward in healing and health!

I have also debated with my self about taking Arimidex. the side effects are tough . i have been on it a little over a month and i experience nausea and very severe tiredness.  I am trying to  walk a couple of times a week to boost my energy level.  I am going to visit a health food store for vitamins. 

I believe I am one of the first who have taken it more than 10 years.  It had just been released by FDA

In the beginning, there was some joint pain that slowly disappeared over 2-3 years, then no side affects at all.  I won't give it up for anything.  With my DX I wanted to remove as much of the anvil over my head as possible

However there are people whose side affects are so severe for them they stop taking it. Everyone is different, tolerance is different, perception of the big picture is different.

Do what you think is best for you but I do not feel that there is anything  really horrible that might happen that it isn't worth a shot.  But that's my take on it. BUT if you do decide to take it, MAKE SURE THAT THE DOCS MAINTAIN AN AGGRESSIVE MONITORING OF YOUR BONES!!!

The best you

Sherry