Severe side effects from AIs

I won’t advise you but I can relate my experience...

I could not tolerate the AIs. The joint pain was literally debilitating. I kept asking myself was this really living?

I stopped taking them because I was post menopausal and my BMI was over 30. I didn’t think they would make a difference.

After 8 years of trying not to worry, it came back.

Would it have come back after 5 years of AI? I really think it would. But that’s just me. Make your own choice. You are the one living with it.

I tried to be healthy and had no hormones. But being overweight contributes. I’m not obese but bigger than I want to be. So Genetic Testing will tell me what genes are broken and what to expect next.

Hope you stay well and enjoy life

So I would like to bring up several issues that have bothered me with this whole journey on AI’s. I had side effects on both Letrozole and Arimidex and am now trying Aromasin. I know our Dr’s like to suggest trying a different type once side effects happen, with the hopes that a different drug will have less harsh results. Here’s my conflict with that. What ALL the estrogen blockers do is deplete us of estrogen...and it is that lack of estrogen that causes these side effects. Menopause symptoms on steroids so to speak. I feel like trying a different one is almost a “distraction” from the actual problem with all of these drugs. Depletion of estrogen, which while potentially helps avoid a recurrence if we happen to still have a cancer cell lurking, is depleting is of what normally helps protect our hearts, joints, brains and bones. So, to me, there is no great choice when deciding to takes these drugs, or not. I also have a higher than ideal BMI and have been exercising, eating clean, intermittent fasting...and virtually impossible to lose weight. I have even read these drugs aren’t as effective if your BMI is higher than should be. Not sure if that is correct or not but makes sense to lower your weight to help lower estrogen from fat and yet hard to lose on these drugs. While I had a low grade, Stage 1A, 1cm tumor with no node involvement...my Oncotype score was 24. Had a double mastectomy to avoid radiation and no chemo due to score (barely making the cut-off).

This decision to stay on AI’s or not has been the hardest struggle for me of this whole journey. Thanks for listening

I got the Genetic Tests results...no Gene Mutations at all. But there was an AU on the MUYTH gene there's no answer for.

That means I have no “genetic" predisposition for Cancer but now I have BC for the second time. There is no reason I should have gotten it the first time. JS...

Had the Oncotype Testing done and waiting for the results. In my Research I've found that different chemo drugs work on different genome types within your tumor. Commonly called SERMs. This makes perfect sense to me. Why use a scattershot shotgun blast of Anastrozole to kill all the Estrogen and Progesterone in my body? Obviously my brain, heart and bones need hormones to function. My MO is only considering the Oncotype Score to determine my chances of responding to Chemo.

My MO is insisting that I take Anastrozole or Faslodex without systemic Chemo for ILC. Right now I'm fighting that. Will have a Bone Scan and Whole Body CT Scan on Friday. If the area of the chest wall shows again, I'll be kicking and screaming for a new Treatment Plan. If the chest wall is clear, I'm still waiting on the Oncotype Test to determine which of the 12 genes in my Cancer might respond to which drug.

If all else fails and my only option is Endocrine (hormone) Therapy, I'll chose Faslodex. At least it only targets the Hormone Receptors in Breast tissue.

It's been 5 months since I noticed something wrong and I still do not have a Treatment Plan. I'm getting antsy.

Just wanted to add my “slow growing” ILC has grown from a 6 to a 9 cm size in 6 weeks time..