Should I take AI considering all the side effects?

phnlhaeu @phnlhaeu

You're asking the right questions, pros vs cons (side effects). A medication for one reasons effects other things and you have to make decisions based on your situation. Everyone's treatment plan is based on their situation.

I had similar diagnosis, but had lumpectomy, chemo and radiation. I tried multiple AIs, but did not tolerate side effects. I had discussion with providers about risk of reoccurrence with and without AIs. In my case because of chemo and radiation, the chance of reoccurrence was low. But, my sister cancer was caught early and she just had lumpectomy, and her oncology said it was very important that she take Ais.

Noone warned me about increase of cholesterol due to Letrozole, so was surprised when my cholesterol increased. I was starting with good cholesterol, so no meds required, but once stopped Letrozole, dropped back to normal. I did Zoledronic Acid Injection when on Ais, tolerated well.

Some people tolerate Ais without problems others it effects their quality of life and they have to decide if it is worth it.

I would suggest you try, and if have side effects, discus with your oncologist about options.

Laurie

I took letrozole for 5 years and wanted to do more. I had no weight gain or high blood sugars and my cholesterol remained fine. I had some joint pain that went away if I walked more than 30 minutes. I actually miss the feeling of safety while on it. I am 9 years out. There is a significant difference between 10% and 5% risk and for hormonal cancers, risk continues to rise.

If you were only slightly positive for ER, that might be a factor though.

My docs did not prescribe a bone med for me despite the fact that I already had osteoporosis, due to other health conditions I had. I did lose bone density. After treatment I finally managed to go on Tymlos and my bone density is now better than it was before letrozole.

I agree it is a good idea to try it and see how it affects you, but be aware that some side effects will ease up over time: for me, specifically hot flashes eased up.

If your oncologist recommends/ prescribes AI meds I think it’s a good idea to at least try. After one year on AI, I lost weight ( using WW) my cholesterol lessened a bit … due to weight loss I suspect… and at one year my DEXA ( bone density) was an insignificant.01 change in each hip ( one up and one down) and spine stayed the same. I’m rechecking in April to see if this remains stable.

I have had joint discomfort mitigated by yoga, walking and hiking. I also had some middle of night insomnia. I noticed, after one year, that my joint and sleep side effects were much much worse . Upon closer investigation I learned that the pharmacy had changed their generic manufacturer. I found a pharmacy using the original manufacturer… got it… and side effects went back to original intensity. In the meantime I am experimenting with the BRAND ARIMIDIX… ALL side effects dramatically lessened.

Lesson Learned: sometimes the manufacturers add different fillers that can cause additional reactivity . Also they can fluctuate 20% in either direction of formulation. BRAND is fully regulated by FDA and cannot add or fluctuate.

I suggest trying before assuming that it will compromise your quality of life. Many women have no side effects.

Very personal decision; you get to choose what is acceptable and comfortable for you. Best to you on this unwanted journey.

I'm glad you said this because, 6 months after crossing the rainbow into the Cancer Zone, I've read way too many stories by women who deeply regret going against medical advice (AMA) at any stage in their treatment. Contrariwise, I've read stories about lucky ducks who continue to rock on 30 years after skipping everything but a lumpectomy.

I elected to go through prophylactic chemo then radiation. I'll continue to follow medical advice. I don't want to be that person who ends up with more cancer PLUS painful self-condemnation and agonizing second-guessing of one's own judgment. "Why didn't I at least try that?"

That said, if this med diminishes your quality of life to an unacceptable level, I would change it. If all the alternatives also do it, that would be the perfect time to go AMA.

I'm 81 and after 5 days on Letrozole I had the worst pain in my life. It felt like an ice pick had pierced my ear. Since then I learned that many doctors at leading hospitals are having patients take it every other day. if I were you, I'd start that way and see if you can stand the side effects and if so, switch to every day.

I've been taking Anastrozole now for 2 months every other day and am getting off it because again severe pain in my ears and trigger fingers. Guess I will try another one. But it seems older women do get more severe side effects.

Like others I have Osteoporosis and have decided not to take medicine for that. I've changed my diet, take supplements, and see a physical therapist to do exercises to strengthen my bones. My last Dexa showed a small amount of improvement.

GOod luck.