8 Years of Arimidex - My Experience!

Anonymous

To all the newbies who are afraid of the AI's, this is my experience.  I have completed almost 8 years of Arimidex.  I was diagnosed at 51 and have/had IDC 2.2 cm with isolated tumor cells, Grade 1, Stage 2. In the first years of Arimidex, I experienced some bone, joint and muscle pain, vaginal dryness but that is about it.  Now have occasional bone, joint pain and of course at almost 60 I have vaginal dryness.  Research shows the AIs do work so I follow the facts.  Please don't allow fear to discourage you from taking the AIs.  There are many of us that have had manageable side effects.

Good luck to all.  Much love to you.

TuffMama

Hi, Nashville - We're neighbors, sort of. I'm in E. Tennessee, a transplant from S. Louisiana less than a year ago. I was started on Arimidex, but my new onc changed me to Femara (generic) to see if the joint pain etc would improve. The biggest difference I see is in the duration and intensity of hot flashes. For some reason, with both these drugs, the worst hot flashes occur in the middle of the night. With Femara, they last longer, are "hotter" and cause the dreaded night sweats. I can usually throw off my covers and drift back to sleep, but sometimes I have to get up and change to lighter sleepwear.

I, too, am a believer in the efficacy of these drugs, but I do worry about bone loss. I am probably the oldest member of the group at 75, so I'm in danger of breaking a hip without the drug, especially since I have dizziness/balance issues. Did you/do you have ostopenia? Or do you take a drug to prevent it? My doctor is recommending Prolia, but as with everything related to cancer, there are potentially bad side effects.

I'd appreciate input from anyone dealing with this.

Thanks,

Lynne

angelia50

I have been on since August 2014 and have had stiffness and during the night, the waking and being hot, cold, etc. I could live with all of that but for about a week, I have had terrible pain in my right leg. I had a knee replacement in that same leg, so I'm worried its cancer or that the screws have come loose in that leg. Last week I stopped my Arimidex for two days and it seemed better so I started back, and it came back, I see my oncologist Friday so I"m going to stop taking it this week to see if the pain will stop. Hopefully, it is the meds and not something worse.

gypsyjo

Thanks, Aug for posting. I started AI last Saturday. Not the ideal since I was coming down with a cold, but eager to start. My cancer was mucinous and was caught in a early stage. My doctor gave me the option of AIs. It would improve my longevity slightly since my risk was low. If I have major side effects, he would have no hesitation in supporting my decision to stop taking them. I want to give it a try. Life is wonderful and I will do what I can to extend it. I already have arthritis, but haven't noticed it getting any worse. It is still early though. Also find myself waking at night, but not a major problem. We'll see how it progresses. I do appreciate hearing about the success stories along with side effects to watch for.

memphis1211

Aug---will you be staying on for a total of 10 years or were you on Tamoxifen prior to starting arimidex? I am so curious to hear what others have done as I am approaching three years on tamoxifen and my oncologist wants me to switch to arimidex now that I am postmenopausal. I had my heart set on 5 years of each and am having a hard time consenting to the switch now.

Is the consensus out there that arimidex is indeed the superior choice to be on if you become postmenopausal after starting tamoxifen? I guess my question is---how common is it to switch after three years on tamoxifen as opposed to five?

lonnie713

the AI IS BETTER for postmenopausal women.....slightly. But you don't have to take it. I tried it for 8 months the side effects were too much. Joint, muscle and bone pain. My feet hurt, ankles hurt. I could barely move. I couldn't do it anymore. My doc understood. I will go back on tamoxifen 5/1. I have a 4 week break and feel really good going in to week 2 of being off. Good luck

lonnie713

I'm also going to try acupunture. My insurance covers it. I hear it's good for the pain

bambam514

I have been on armidex (anastrazole) for a little over 3 months.  I never had hot flashes while going through menopause but I now get warm sensations not really hot flashes ocassionally but they don't last long and are not disruptive.  I agree there is joing and muscle stiffness but have found advil helps that problem.  I do get some night sweats but again not disruptive as I wake up many times during the night anyway.  I do think it has affected my sleep.  My side effects have been manageable so far and I hope they continue to remain that way.  Only 4 years 9 months left on this medicine but so grateful as things could have been so much worse.  There is a ton of negativity out there about arimidex side effects but don't listen to everything you read.  Everyone is different so it is worth a try.  Your doctors would never keep you on a medication if side effects are affecting your quality of life.

bambam514

There is muscle and joint pain but its manageable with advil.  Crazy as this sounds, I take loratadine 1 10mg pill every night for allergies and this helps with the joint stiffness.  This medicine does cause mild hot flashes and some night sweats and it does wake you up at night.  None of my side efefcts after 3 months are disruptive so I will stay on it.   Try to hang in there wi this medicine.  Your life is so worth it.

angelia50

bambam514, I had heard of the loratadine on another board and I'm starting that to try and see if it will help this leg issue I'm having. I also wonder, how much calcium a day are most of you taking???

Anonymous

So glad that others are posting on this thread.  I plan to remain on the AIs for 9-10 years.  I recently had the BCI test completed on my original tumor and I found that I would get some benefit from continuing.  Again, good luck to all.

Heidihill

I'm trying acupuncture now (and hoping insurance will pay). It's too early to tell if it's working. I'm on my 8th year on antihormonals. I started with Femara, lasting 4.5 years, switched to Tamoxifen, then back on an AI, Arimidex, after two years. So far still NED at stage IV. AIs have had better results than Tamoxifen in studies of postmenopausal women but Tamoxifen can still be very good. I am an ultrarapid metabolizer of Tamoxifen and ideally, for both Quality and Quantity of Life, I'd want to alternate between an AI and Tamoxifen, given the choice.

florida2015

thank u

Wino

Glad to see this thread. I started anastrazole in December from chemopause. The she's so far have been a little insomnia (so I take pill in the morning) but mostly a strange taste in my mouth. Anyone else?

debiann

I'm happy to see this thread. While I realize some have more severe se to the anti-hormone drugs many do not. There seems to be a lot of fear surrounding the use of these drugs and I don't think everyone completely understands how important they are for preventing recurrance. Heidihill is a great example, 8 years NED with stage lV, wonderful!

I've been on Arimidex for 6 months. I had hot flashes and some achiness, which are both improving. Annoying at times, but not affecting my quality of life. Exercise helps the aches and dressing in layers helps when the hot flashes hit. Hope this helps alleviate the fear in anyone one on the fence about these life saving drugs.

marianelizabeth

I have just started year 3 on Anastrozole. Wino, yes to a strange taste but I have never really thought about it until you posted. Night sweats for sure and fairly often. So far no osteoporosis though onsteopenic. I do a lot of hiking etc. and MO thinks that may ward off the osteoporosis. I found this topic while looking for info on adjuvent biophosphonates (mods suggested I might find something in these topics about it. My MO suggested last appt. that this might be something to think about as a post-menopausal high risk BC woman. I want to go back a big more educated when I next see her in June so if any of you has any knowledge let me know.

Claire_in_Seattle

Not that anyone's counting, but I am down to the last 12 tablets! Yes, on the metallic taste. I also have some strange foot pain right now. I am glad I am finishing up. Would certainly do it again, and overall, not that bad. BTW - I never had libido issues either. Just the metallic, soreness, and a bit of stiffness. I will get my bones checked in about 6 months once everything has recovered, and go from there.

One of the reasons I now run is to pound those bones. I also lift weights. As I said, I will know in a few months how I came out on the other end, but suspecting just fine. - Claire

angelia50

congrats Claire. I have to take Arimidex 10 years, so I only have 9 1/2 more to go.