Decide against aromatase inhibitors?

Posted by ruffianfan55 @ruffianfan55, Jul 2 12:02pm

I have DCIS ER+PR+, stage 2, treated with lumpectomy(clear margins) and radiation. I’m 70 and am leaning towards not taking aromatase inhibitors since they only lower the risk of recurrence by 2%. Has anyone else decided the same and do they regret it?

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Profile picture for myoga @myoga

@timely
Like you I had side effects with both anastrozole and letrozole. I was on anastrozole for a year until my fingers became so stiff that I couldn’t hold on to any object. The joint and muscle pain did get better though. Moved on to Exemestane. Everything was fine until I had mastectomy. I had to do warm compression to get rid of hematoma. Combination of that and Exemestane gave me petechiea. So my onco prescribed Letrozole. It’s the worst! After only three months and several aura headaches I had a full blown migraine that woke me up at night. So now I’m back on exemestane. The first week I took it every other day for my system to adjust. The second week I took it for two consecutive days then off one day. So far so good. I plan to stay on it like for a while. You might want to ease your body into it to see if it works better. Unlike Anastrozole and Letrozole, half life of Exemestane is 24 hours. Since the drug leave your body faster, maybe the side effects are less severe. If you decide to try it, please let me know how it turns out. Make sure you do light exercise like walking every day. That helps a lot with joint pains. Good luck with Exemestane. Hugs.

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As I get concerned about various issues, I am worried that a side effect of Exemestane is that it puts a permanent block on metabolizing any estrogen.

I think that if I have an allergic reaction to Exemestane in any way, that allergic reaction will be permanent because of permanent estrogen blockage.

I have had allergic reactions to most meds. given me in the past 3 years….

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Profile picture for timely @timely

As I get concerned about various issues, I am worried that a side effect of Exemestane is that it puts a permanent block on metabolizing any estrogen.

I think that if I have an allergic reaction to Exemestane in any way, that allergic reaction will be permanent because of permanent estrogen blockage.

I have had allergic reactions to most meds. given me in the past 3 years….

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I am Er&PR pos Her2-Neg Ki67-10% brca Neg Stage 1 1.2cm
lumpectomy done 7/29 clean margins Onco score 3
turned 70 in Dec I meet w radiologist to discuss treatment
I also have to meet oncologist who’s going to try and push hormone receptors which I am NOT interested! hearing every side effect is horror

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I am 68, I took one anastrozole pill and my whole right hand froze up with trigger fingers. I was switched to letrozole, 2.5mil. I choose to cut the pills in half and take them Monday, Wednesday and Fridays. There was a trial done in 2010 where there was no difference in taking it like that and at a lower dose then the way it was being prescribed. I feel it is a compromise on my part. I've been on it for 3 weeks and so far no side effects. The half life of letrozole is 48 hours so I don't know why you should take it every day. I also take natural AIs, grape seed extract, DIM and a few others. I also take a calcium supplement and MSM 6000 mil for any joint pain. I gave up drinking any alcohol and only eat food we cook at home. I had a low oncotype score 5 with a reoccance rate of 3 percent. Everyone needs to do what they can live with

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@dlardin

I took one Anestrozole pill and both legs tingled above and below the knee and both gave out at the same time..

So, one pill can do problems immediately.

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Profile picture for timely @timely

@dlardin

I took one Anestrozole pill and both legs tingled above and below the knee and both gave out at the same time..

So, one pill can do problems immediately.

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I think we should all be aware that these meds have different effects for different people. I have been on anastrozole for seven months or so with no bad effects except for dry eyes, etc. One of my good friends was on another one and was switched to anastrozole because letrozole gave her side effects (bad joint pain) so we have to experiment and I know that’s hard!

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Profile picture for marshgirl24 @marshgirl24

I think we should all be aware that these meds have different effects for different people. I have been on anastrozole for seven months or so with no bad effects except for dry eyes, etc. One of my good friends was on another one and was switched to anastrozole because letrozole gave her side effects (bad joint pain) so we have to experiment and I know that’s hard!

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Good point! I've been on letrozole for almost three years without side effects. I think it is best make these decisions by first ascertaining your individual risk and then trying what your oncologist suggests, with the proviso that you may have to stop if side effects are unbearable. I would not make it based on possible side effects or other peoples' experience, because as you say, we are all different. I want to add that the letrozole is what is keeping me alive. I had no chemo due to kidney disease, and am lucky this relatively mild treatment is keeping me going after lumpectomy and 15 radiation treatments. So I'm very grateful for the option of an AI.

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Profile picture for brooklyn22 @brooklyn22

I am Er&PR pos Her2-Neg Ki67-10% brca Neg Stage 1 1.2cm
lumpectomy done 7/29 clean margins Onco score 3
turned 70 in Dec I meet w radiologist to discuss treatment
I also have to meet oncologist who’s going to try and push hormone receptors which I am NOT interested! hearing every side effect is horror

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I was the same way as you. After doing a great amount of research & stewing over all of it, I chose not to do any AI. I did have 5 rounds of radiation & had no problems there. My oncologist was very kind regarding my decision. She kept telling me her side & I voiced mine & she would just say, “we are all about prevention & you can try one & if it doesn’t work we will try another one.” I would smile each visit & say no thank you. That was 2 years ago, I’m 73 & just had another appointment with her with labs & all was great. I feel this is a very personal decision to be made by the patient. Sending good vibes your way.

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Profile picture for queenofjacks @queenofjacks

I was the same way as you. After doing a great amount of research & stewing over all of it, I chose not to do any AI. I did have 5 rounds of radiation & had no problems there. My oncologist was very kind regarding my decision. She kept telling me her side & I voiced mine & she would just say, “we are all about prevention & you can try one & if it doesn’t work we will try another one.” I would smile each visit & say no thank you. That was 2 years ago, I’m 73 & just had another appointment with her with labs & all was great. I feel this is a very personal decision to be made by the patient. Sending good vibes your way.

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You sound amazing !! Wishing you the BEST!!!

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I am84, just finished33 radiation treatments after complete mastectomy. I will not take meds and just putting my health in Gods hands. I am at peace with my decision.

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I have been on Anastrozole for over 16 months. At first the side effects were difficult. However, over time, the side effects have receded and other than occasional constipation (usually because I didn't drink enough) and fatigue on some days, there are no longer any noticeable side effects. I will be using them for 5 years more. There are several aromatase inhibitors and if one doesn't work, there are others to try. You may do well on one while another is a horror show. It's not unusual to switch, doctors are used to dealing with making you the most comfortable that they can. I would suggest trying it before deciding against it. Many people have very few side effects on the right one.

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