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Scared to begin Arimidex

jpteacher1's picture
jpteacher1
Posts: 2
Joined: Jun 2014

My oncologist has prescribed Arimidex for me following lumpectomy and radiation.  I am 68 years old and my breast tumor was Stage 1 Grade 2 with no lymph node involvement and wide margins.  I have rheumatoid arthritis and also osteopenia.  The oncologist gave me a grace period before I needed to begin the medication, but the time has now arrived.  Are there others that have been scared to begin because of SE and if so, how did you get over your fear?

Double Whammy's picture
Double Whammy
Posts: 2301
Joined: Jun 2010

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's picture
jpteacher1
Posts: 2
Joined: Jun 2014

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. 

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

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

mustangjan
Posts: 3
Joined: Aug 2013

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.

 

 

sbmly53
Posts: 1476
Joined: Jan 2010

I have fibromyalgia and just didn't want to hurt anymore than I already did. So, I took advice from a pink sister and kept a journal before I started Arimidex of my aches and pains to compare after. 

I do have ankle foot pain that I did not have before. I do a few foot stretches before I get out of bed. Once I get going, it's not that bad.

I did appreciate that I felt that I was still actively fighting.

 

Sue

CypressCynthia's picture
CypressCynthia
Posts: 3983
Joined: Oct 2009

Armidex is not an easy drug, but one that has helped me buy time and, for me, that makes it so worth it.  I did better taking it at night as if I took it in the am, I was too tired.  I had my vitamin d level checked (simple blood test) and it was low, so I worked with an endocrinologist to get it normal.  There are studies that indicate a low vitamin d level can make the joint pain worse.

You are in a difficult position because I imagine you already have significant joint pain?  My advice is to take it and see and don't give up.  I had a sister who couldn't tolerate one of the aromatase inhibitors (that is what arimidex is) and she switched to aromasin.  She never had the joint pain.  My younger sister has had minimal se from femara (mild joint pain).

I had mild joint pain on arimdex and would still be on it, but I am Stage 4 and it quit working after awhile. 

SE are scarier, but cancer is scarier and very sneaky.  I am an old-timer who was originally diagnosed with Stage 3 in 1987!  I had a long remission and then have been Stage 4 since 2005 (bone, lung and liver mets).  I am currently back in remission, but I do not know how long before the cancer shows up somewhere else.

My philosophy has been to take the cancer fighting meds and then deal with the side effects with exercise, eating right, other meds - whatever it takes to get through it.  Sometimes I feel like, if there is a reason why I am still alive after 27 years with this wretched disease, it is to encourage others to just do it!!!  and stick with it!!!  Big, big (((hugs))).

 

1blessedmom
Posts: 14
Joined: Apr 2014

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.

 

lizzie17
Posts: 528
Joined: Nov 2009

I just finished 5 years on Arimidex.   The SE were there, but I just kept taking the drug.  My oncologist said if my bone pain lasts more than 24 hours straight, then call him.  Also I ran fevers, but as long as it wasn't over 100.5, I didn't have to call.

And for me, I had what I called "nausea attacks".  They would  come on suddenly, and when I could just go to sleep and let them pass, I would.  They usually happened in the evening or during the night, so for me, my oncologist had me take Arimidex in the morning.

I was always tired and kept working (teacher) but came home and pretty much could do nothing.  I have adult daughters and I think they never understood that part.

But, I kept smiling and was grateful. I still am.  

My thought, go ahead and try what the doctor wants you to.  I won't say it is easy, but for me it was doable.

Sending you prayers.

 

 

 

eihtak
Posts: 850
Joined: Oct 2011

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!

 

cati0314's picture
cati0314
Posts: 32
Joined: Jun 2014

I've been on anastrozole (arimidex) for about 4 1/2 years.  I expect when my 5 years are up the oncologist will recommend another 5 years as guidelines have changed.  I am PR so I need the inhibitor.  I have osteoporosis.  Anything is better than a cancer recurrence, at least that's my view!  Hope you're doing well on it.  The SE haven't been all that bad.  Best of luck!

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