For Arimidex (Anastrozole) users, new, past, and ongoing

Spookiesmom

I’ve had clots in my leg, waaay before cancer. They didn’t hurt all the time, more like twinges. Had them in my lungs too.

DONT wait to see MO, get to PCP Urgent Care or ER ASAP. They are not something to ignore.

I spent 3 days in hospital and was very lucky to walk out.

vampeyes

Hey All,

Some of us girls on the Tamoxifen thread have been working on a survey for curiosity's sake. Started out mainly to see where everyone was at with side effects. There will be no emails collected, no names, all anonymous. If you have any thoughts on adding to the questionnaire send me a message and I can add it. So far 9 people have responded and once you are done you will be able to view the results. Thanks in advance.

Cheryl

https://docs.google.com/forms/d/e/1FAIpQLSeagf3khiNG6Ww-xC8i_wr_SrJm9mgpByR1TqmvcaQdmyZtiA/viewform?usp=sf_link

CeliaC

coachvicky - Totally with you on the 5 years and that's it!

jlmg

I was wondering if anyone developed a rash from taking Arimidex (generic). I had a DM in April, 2011 with reconstruction. I took Femara for 3 years, then Aromazin for 2 years, tried Tamoxifen, and then Evista for the last 2 years. The side effects finally did me in, and I stopped Evisita in November, 2017. I just started Arimidex on April 9, 2018, and I developed a rash 4 days in. It started on my legs and moved up to my face today, but it did not spread to my torso. I stopped taking the pill on Sunday, the 15th. The PA told me to use Aveeno and Benedryl. I just wandered if anyone else had a traveling rash. I've had MRSA after multiple surgeries, and I think I should get a blood test to rule that out.

Thanks!

wallan

Hi jlmg:

I had a rash. Same kind as you describe and itchy. It finally receded after about 6 months. I was told to take Benadryl and moisture too.

This drug can do weird things to us.

wallan

Snickersmom

I have been on Arimidex for almost exactly one year. I really haven't had any bothersome side effects. I am on 1mg daily. As far as I know, that's the standard dosage but I don't know why. I'm thinking it has something to do with my estrogen and progesterone levels, which were very high.

I had my eyebrows microbladed about 1-1/2 years ago and was much happier with the regular semi-permanent tattooing. The microblading has not lasted as long and was much more painful and expensive. So when I need it done again, I'll go back to the semi-permanent tattooing.

Suzanne50

Hi all - I saw my MO a few weeks back and she put me on Effexor to help with the night sweats and hot flashes. It seems to be working. I really don't get any hot flashes during day anymore and the night I am down to maybe one compared to the six-eight I had been. So that is an improvement. I am not as energetic as I used to be - don't know if that is due to meds, menopause, age or all three. I exercise every day which helps. I guess I just have to get used to it. I am under the impression that my doctor wants me to be on this drug for 8 more years. I would love to be done after 5! I am 3 years out from diagnosis.

coachvicky

Suzanne50

Ask you MO to do a full thyroid profile (T3, T4, and TSH). Demand all three and don't let your MO say the TSH will tell enough; it doesn't. Also ask to test your iron levels. I am thankful my Primary Care (PC) watched my thyroid. My first MO wanted to "wait" until chemo was over and see if my labs settled out. My PC's approach was correct and made an adjustment in my thyroid meds thus stopping the wait gain and eliminating some fatigue (not all fatigue as I had four months of chemo remaining at that time).

I had the discussion with my new MO a couple of weeks ago about an additional 5 years. He said there was no convincing evidence / research that an additional 5 years of Arimidex was beneficial. I realize some MOs go for the additional time. Mine does not and I won't. My Mammaprint gives me 94.6% opportunity for no recurrence if I finish chemo and 5 years of a blocker. Even if I got an extra 1 - 2 percent, I would not stay of Arimidex any additional time.

Coach Vicky

Ingerp

Hey vicky! This is not really my thread <yet anyway>, but thought I'd pop in to check it out. I'm several months away from going on *any* AI but in my initial sit-down with my MO, when it came to the AI part of the treatment plan and she said five years, I looked her in the eye and say, "Not 10?" She said definitely not 10. And honestly I'm keeping my fingers crossed that during that initial five years there will be <more?> research confirming that five years is enough.

lala1

coachvicky--Just out of curiousity, is the mammaprint test only to determine if women need chemo? I'm wondering if there is another test out there, other than the BCI, that gives you your recurrence risk for years 5-10 that I could do. My BCI was high risk/low benefit and I'd like to do another test that might give me more peace of mind.

coachvicky

lala1 ...I will have the BCI at the five year mark. Yes, the Mammaprint tells if chemo will work. I had mine & the Blueprint after I started chemo. I wanted to know what my luminal sub-grouping was. And, I just didn't trust my treatment plan. I,too, wanted peace of mind.

Ingerp ... There is also a forum for "doing well on Arimidex" or something like that. It is very encouraging in that not everyone has horrid side effects. My hope is that in five years every cancer center will close.

Coach Vicky

smwusaf

I agree about the thryroid testing. I've never had thyroid issues before and now all of a sudden it is low so now I'm taking thryroid meds. I'm so thankful that my dr did that blood work, I wouldn't have even thought to ask.

Peregrinelady

I agree that the BCI should be taken at 5 years. Mine came back high risk, high benefit so I will go at least 7 years. Regarding thyroid tests, my PCP said NO when I asked for one at my wellness check. He said I had to have symptoms. I am so tired of PCP’s that no nothing about cancer. I guess that I will have to find another dr. to order it.

Peregrinelady

HapB, is 1% benefit what your oncologist told you? Everything I have read and learned is that AI’s cut your risk of recurrence in half. (If they work on your particular cancer.)

coachvicky

Peregrinelady

I would not stay with a doctor who would not test what I wanted. Being tired is a symptom of a thyroidthat's not working.

Hap, Probaby not for 1%

Coach Vicky

Peregrinelady

That is my point. I don’t think a calculator is specific to your cancer. Yes, stage 1a is less likely to recur, but not impossible. I would listen to what your oncologist has to say over a calculator. Just my opinion, everyone has to make their own decisions.

Peregrinelady

Coach Vicky, I agree, but I am having a heck of a time finding a PCP that has a clue about cancer in my small town. I do have a good gynecologist though, so I will ask her to test my thyroid.

Nancy618

http://www.lifemath.net/cancer/breastcancer/therap...

I used the site at this link to put in my stats and I come out at 1% increase in survival rate. My MO pointed out that this is survival, not a recurrence in cancer.

I will probably be leaving this group....I saw my MO who is willing to work with me on what is best for me, including stopping all AIs if that's what I want. I took letrozole for about 3 weeks before I bailed because I wasn't sleeping and was an emotional mess. I took anastrozole for 6 months until I couldn't take the constant pain. Was on aromasin for 4 months. The pain wasn't quite as bad, but the dryness and fatigue, lack of desire to do anything, and cost drove me to ask the MO for advice.

Between the two of us, we decided I'd try the letrozole again. He says he sees the fewest side effects on it and always suggests it first. I only gave it 3 weeks and the problems I had may have just been do to being totally new to me. I had some sleep issues on the other AIs and am now taking hydroxyzine at bedtime, which really helps.

I know exercise is going to help...I just have to talk myself into it. When you're already feeling exhausted and achy, it's not something you want to do. I'm about to go take a walk. I think Spring has finally arrived!

Nancy618

I forgot to mention, HapB, that he did suggest Tamoxifen, since it's the only one that I haven't tried. But the increased incidence of uterine cancer bothers me. He said it has less drying effects and actually lowers cholesterol, so there are positives. I asked if he ever goes back and tries an AI already tried and he said sure. That's how we came up with trying Femara/letrozole again.

I can totally see how living alone would affect ones decision on taking the AIs. I notice I have LOTS more trouble opening jars than I ever had. If you have nobody to help you, it makes it way worse. Hard decisions to make. I'm all for quality of life vs quantity. After all, none of us are getting out alive. I'd rather enjoy the time I have .

Incidentally, I stopped the Aromasin last Tuesday. Since then, my pain has subsided A LOT...virtually non-existent during the day. Now, during this time period, I also started 800mg Turmeric and 500mh Taurine (which I forgot to tell my MO). So, what the lessening of pain is actually due to, I'm not sure. I also took a very short walk because my strength and stamina isn't there, and my hips, etc feel great. I am vowing to walk every day, even if it is less than a mile.

coachvicky

Peregrinela…look into MD VIP to see if one is close

Coach Vicky

Peregrinelady

Thanks, Vicky, I tried it but the closet is 3 hours away. It looks like a great resource, though, for people in larger towns.

Peregrinelady

HapB, I guess I just don’t believe the 1% statistic. Also, I would probably look at taking the drug differently if I was stage 1a and had debilitating side effects. Unfortunately I don’t have a choice based on my BCI results and the fact that my cancer is 100% ER positive. Just an aside, 1 out of 100 people is still a lot of people when 40,000 are diagnosed each year.

Doofuscat

HapB what was the 1% based on, Oncotype Dx? I have the same stats as you. However, I was read the riot act by the MO at the Mayo Clinic that the 1% was based on taking AI's for 5 years or 2 years of Tam followed by 3 of AI's. So far I have been on a every other day dose of anastrozole and I am hating it. No sleep and I hurt everywhere. Not sure what to do. I am making an appointment with my local MO to discuss options.

Nancy618

If you plug in all your numbers in the calculators on this site, you can see your results for survival. Mine too only goes up by 1% for I'm really thinking all the side effects are not worth it. I told the MO I would use the letrozole until I see him in another 4 months and then we'll talk about it again.

http://www.lifemath.net/cancer/breastcancer/therapy/index.php

Peregrinelady

HapB, with every decision about treatment, you must outweigh the risks versus benefits. It sounds like you have found more risks than benefits from the antihormonals.

MexicoHeather

Check the thyroid panel, but also monitor yourself on Effexor. After 3 months, there were significant side effects for me, including being tired. Effexor really helped at first with the hot flashes -- they went down 50% -- but mentally it was bad. I didn't find my shoes in the refrigerator, but I was on the way there.

Nancy618

I am now perplexed.

I have been off all AIs for 8 days per my MO before going back and trying letrozole again.

I was doing great. Pain gone. Felt more energetic. Sleeping like a log. Then, since Tuesday, I have been achy all over, with shooting pains in random places, my sleep has been interrupted, and the hot flashes are intense. What the heck is going on? Makes me wonder if the AIs aren't really causing me the pain or if they're causing some more permanent issues that don't go away when stopping them.

This is so frustrating.

Barbmak

HI ladies- I'm with PontiacPeggy. Because of this forum I asked pharmacy for Teva brand only and I can't say I have any side effects that I can tell are from that drug. I have arthritis and joint pain in the hands mostly- but again - don't know if it is the medication or just me getting old. I do have a question though. I feel that my skin has aged more rapidly this last year and I don't know if it could be the medication....I have always been 'younger looking' for my age and people would be surprised at how old I was...now I really feel like I look my age or older...possibly meds? or just a rapid decline?!! lol I started meds in late July. I am also on Prolia for bones..

CindyNY

Barbmak- I just mentioned to friend that I think I look much older than I had, like I've aged rapidly. She mentioned stress from dx going forward. So I think its stress and the meds removing all estrogen.

dtad

Hi everyone...we need estrogen for younger looking skin! A good skincare regimen is even more important when on anti hormone therapy.