Which AI are you taking? Differences? Who decided?

JosieO · April 2018

i’m Interested in your thoughts/comments/experiences regarding the different AI drugs.

My tumor tested 100% estrogen positive, my MammaPrint results pointed me away from chemotherapy, so I know an AI is in my near future. Meeting with the medical oncologist for the first time on Friday, so trying to learn all that I can.

I read that Aromasin is classified as a steroid and irreversible, while Arimidex and Femara are described as nonsteroidal and reversible.

My first thought was that I’d like to avoid a steroid if at all possible. Is that a legitimate concern?

How did your oncologist choose the AI that you take? I’m wondering how they decide what product to start you on.

Did you feel like you had a say in the choice? I’m going to ask my questions but I don’t really know the basis for the decision.

Finally, are AI’s taken during radiation treatment?

Appreciate everyone’s help

Lula73 · April 2018

my MO originally said I’d take anastrozole. When the time finally came he recommended starting with letrozole. He said letrozole had fewer SEs in his experience and since o was med sensitive we would start there. So far so good. SEs are few and bearable and much better than the SEs I had on tamoxifen.

CindyNY · April 2018

Easy answer first - postmenopausal, no lymph node involvement; I didn't start my AI until a month and a half after completing rads. MO wanted me to be healed up completely. And I truly wasn't too bad after rads.

How they chose what one to put me on: I don't know specifically why Anastrozole. I think based on Stage 1, ER+/PR+/HER2-, and possibly less side effects than other 2 AI's.

There is a link in this forum, in the main site, that describes them - you can read each one. Best of luck to you.

Meow13 · April 2018

Exemestsne scared the you know what out of me for an extremely dry eye situation and I had to stop anastrozole due to joint pain. But managed to do 4 years on them.

Ingerp · April 2018

Josie--I can't help you but I will start one in a few months and have wondered that same thing myself. I don't know if different MOs have their preferred, go-to one, if most typically start with this one or that one, . . . I have looked at this several times over the past few weeks:

http://www.breastcancer.org/treatment/hormonal/com...

I'm hoping they ask you some questions before prescribing that point them in a particular direction? And I'm *pretty* sure my MO said that as soon as I finish the Taxol (I have not updated my profile yet but will start the typical Taxol/Herceptin protocol next month), I'd start both rads and the AI.

I have favorited this thread--thanks for starting it!

dtad · April 2018

JosieO....IMO docs prescribe the aromatase inhibitor that his/her patients have done the best on. Just personal experience. However I did want to point out that its ultimately your decision! Do your homework and discuss all options with doc. Good luck and keep us posted.

Egads007 · April 2018

Ingerp - thank you for posting the SE chart, I’m switching up in December from Tamox so it comes in really handy! I found it funny that it listed tamox as not causing joint/bone pain...tell that to my feet! Oh well, I’m sure it’s different for everyone. Like you I’m hitting the favorite mark on this thread...should be interesting to see how things transpire.

I will also be asking my MO to prescribe the AL that will have the side effect of making me tall, blonde and 23 years old

Ingerp · April 2018

Egads I want the one that makes me 15 pounds thinner.

Runrcrb · April 2018

I asked my oncologist how she decides. Her response was that doctors start with ones they are most familiar with. Different hospital groups,for example Duke University vs MCV in Richmond have different preferences.

The main thing is you want to start with something and then see how the side effects are. I started on arimidex and switched to aromasin- far fewer and less severe side effects for me. Also try taking the AI at a different time of day to see if that helps. Aromasin at night = insomnia for me; taking it in the morning corrected the issue.

I too would like the one that causes me to loose the now 15 pounds I’m up since diagnosis. Please post if you find it. I was hoping my hair would come back platinum blonde and Texas big - unfortunately same dirty blonde/brown/grey but super curly. At least I have hair.

Egads007 · April 2018

Ingerp & Runrcrb - so true...15 lbs lighter on body and hair 15 lbs heavier! Texas big..LOL!

It does indeed look like a case of ‘try it and see’. Kind of like dating, without getting your dinner paid for or a kiss goodnight.

Ingerp · April 2018

Egads--wait what?? The AI scrip doesn't come with a gift certificate to a French restaurant???

Egads007 · April 2018

Ingerp - Makes the decision even easier doesn't it? LOL!!

mustlovepoodles · April 2018

I've been on Femara/letrozole for 2 years now, with very few SEs. The joints in my hands and feet swell, but are not painful. I had psoriatic arthritis before I ever started Femara, so i really don't attribute the swellign to Femara. No weight gain or hair loss for me.

My sister has been on Arimidex for 5 years and has done very well, no SEs.

Falconer · April 2018

My MO started me on Exemestane, why? Idk. My body ached so much that I couldn't sleep so I tried Letrozole. After four months the worst SE was the absolute lack of sensation during intercourse. I mean, my DH could have been massaging my elbow or my hoo ha and I wouldn't have known the difference. The good thing about Letrozole compared to Exemestane was that I dropped the ten to fifteen lbs I'd gained on the steroid. That was amazing; the rapid weight gain stunned me. Anyway, now I'm on Tamoxifen and it is better than the AI, but probably less effective. So I'm exercising lots as people on these boards say it reduces recurrence risk as well...

The main thing is to listen to your body and get regular exercise!

JosieO · April 2018

To all who took the time to answer:

Thank you for thoughtful and funny replies. Both were helpful to me.

The oncologist discussed AI’s at length, answered all of my questions.

Said he generally uses all three, listens to his patients and switches as their comments dictated. I thought that showed good sensitivity to patient care. So I was happy.

He also told me that AI’s are given after radiation, so was glad to know that as well.

Finally, as many of you indicated, exercise helps a great deal. So i’m going to increase mine, get ready in advance. No reason not to

Will start with Arimidex (Anastrozole).

Egads007 · April 2018

Josie - hoping all goes SE free for you! Yes, yes, yes to the exercise...so helpful. Keep us posted on your progress please!

Ingerp · April 2018

And Josie--so why the Arimidex for you? Just curious about your/your MO's thought process.

JosieO · April 2018

Ingarp,

I had already decided, based on my reasearch, that I wanted to stay away from Aromasin, basis its “steroidal” and “irreversible” properties. Oncologist said it was not a steroid on the scale of prednisone, but he accepted my wish. So I chose one of the remaining two, understanding that I could shift among the three based on side effects (or not). Oncologist supported my thinking, so that was it.

I understand that every experience is different for every person, so will just go forward, see what I learn from experience.

Thanks for asking.

Ingerp · April 2018

Roger that. I agree about maybe avoiding the steroid one if possible but we shall see. Would love to hear how it goes for you.

JosieO · April 2019

Ingerp and all who commented,

First, APOLOGIES for not putting a response back sooner. I was cleaning up my profile and happened to find this.

I have been taking Aristrozole for about nine months, and I have not noticed any significant side effects to report. Only recently was made aware of easy bruising as a possible SE, and I do bruise much more easily. (I also take low dose aspirin, so thought it was the reason for the bruising).

I do exercise for one hour at least 5-6 days every week, and do think that has made a difference. I am also careful to take and refill the same generic (Teva) each time, so as to not bring on side effects from changes in “fillers”.

So all is well so far...thanks for past input and comments. Hope everyone is well

Ingerp · April 2019

Good to hear, Josie. My MO told me she starts patients out on Anastrozole because she's found it has the fewest SEs. I started about 4.5 months ago and it hasn't been too bad. I also hit the gym six days a week, and I'm sure that helps.

reflect · April 2019

Haha My MO started with anastrozole because it starts with A.

JosieO · April 2019

reflect,

Well, at least it is a strategy

Tinkthetonk · April 2019

My oncologist has suggested Femara/Letrozole. She told me most of her patients did well on it, and the SEs weren't horrendous. I already have a high BMI, so I'm a little concerned about the possible weight gain. I will follow your suggestions regarding getting the exercise done most days of the week, once my radiation "burn" heals up.

Thanks for all of the good information.

determinedat54 · April 2019

Hello. I'm new to this thread. I started taking Femara about a month ago. Had double mastectomy last summer, followed by chemo and then radiation. I also have rheumatoid arthritis that seemed to go into remission with everything else going on. Now, I'm starting to have constant shoulder pain and stiff hands mainly in the morning. I'm wondering if this is the RA waking up or if this could be side effects from the femara. Any thoughts?

bravepoint · April 2019

I didn't tolerate Femara well, only lasting a few weeks. I was achy, stiff and started developing numbness in my right hand. I switched to Exemestane and have been on it 18 months. Both were my MO's choices but the Exemestane is definitely easier for me to tolerate.

Butterfly1234 · April 2019

My MO left it up to me to choose. He said if I had SEs we could switch to something else. I chose name brand Arimidex through Eagle pharmacy. I read comments from the other ladies on the boards that some generic Anastrasole can cause side effects from the fillers. My MO didn't seem to know about that but my PCP said it makes sense. My insurance will only cover generic so I pay out of pocket each month 30$ for 30 pills direct through Eagle pharmacy. You can find them online. I've been taking Arimidex for two years next month and doing pretty well. I exercise regularly and my PCP prescribed Gabapentin for joint pain. I only take 100 mg at night. Didn't want to take another med but sometimes you have to do what you have to do. Also Prolia injections every 6 months for osteoporosis. No side effects on that.

Wishing you all well on what ever AI you decide to try. Don't suffer. Speak to your docs until you can find one that is tolerable. My best friend is triple negative and she can't have this treatment and wishes she could. So when I get discouraged and cranky I think of her and our other TNBC sisters.

Nothing about BC is easy. What an understatement!

Gentle hugs.

JoniB · August 2019

Hello. I've been using name brand Arimidex through the Arimidex Direct program through Eagle Pharmacy since April 2016. I pay $90 for a 90 day supply. I was just contacted by Eagle that, with my next refill, the price is doubling to $180. Still much, much lower than filling without the program but a 100% increase is quite a surprise especially since the price of a generic would be negligible.

Which AI are you taking? Differences? Who decided?

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