Aromatase Inhibitors: Did you decide to go on them or not?

I haven't heard about ErSO. Googled it and the story sounds interesting. There's a change . org petition to start a clinical trial for it. If anyone is interested, here's the link: https://www.change.org/p/systems-oncology-possible-breast-cancer-cure-drug/u/30162284

I have been on anastrazole (+ Verzenio) for 8 weeks. This is pretty new (and mostly scary for me), too. I have not seen any side effects from anastrazole yet. I was pre-menopausal so they stopped it (with Zoladex) , too. Taking a walk helps me relieve stress and takes my mind away from it. I bake muffins, cakes etc. and be happy if they turn out good -mostly give them to my kids and friends. There's a lot of confusion on my side so cannot offer much help. Be strong.

Once one is taking a new drug, or trying a new diet or making any change in one's life, it seems logical to assign that change to any other new changes one notices, but contemporaneous changes are not necessarily cause and affect. All of the complex things that would have happened anyway can, possibly, just be occurring on as they would have anyway. Having said that, I decided not to take aromatase inhibitors but 'could' change my mind. The one thing about taking them is that it's not an irrevocable decision as were radiation and chemo. As would be having anthing injected into the body, with a long, long half-life, which is one of my lines in the sand that I hope never to cross. That stuff can't be undone but one can try the drugs, and as others here have noted, try other brands or even a SERM if the side effects are discomforting. The downside, IF, one has a high risk of recurrence (which science cannot yet promise either way), is the lack of protection during time not on the drug. But that would be mostly offset by getting on it belatedly. My fear was of increasing the rate of bone loss because, honestly, the drug treatments for that condition, look like a Pandora's box of poor options and nasty side effects. And the accelerated bone loss was an absolute, not just 'possible, risk for the aromatase inhibitors as the resulting estrogen depletion is the driver. Thats not a popular statement but I hear from others with the same concern and want them to know others contemplate it too. And I've heard from people here whose oncologists failed to tell them about the bone density risk which is, to me, stunning medical negligence. But the fact is these are complicated decisions and, given others' personal risk choices versus one's own, easily confusing. Being willing to make them suggests an inherent courage that I hope is also reassuring.

Severe bone loss may not occur on aromatase inhibitors. It depends on starting point and rate of bone loss for an individual. I had a drop in bone density when I started, but the rate levelled off after the first year. I started off with osteoporosis and after five years had no fractures, even without bone meds.

The bone issues can be addressed with biphosphonates or Prolia during treatment with aromatase inhibitors, and have an added protective benefit for cancer. If a person cannot tolerate those, then Forteo, Tymlos and Evenity are options to grow bone back.

This decision will also depend on ER+ status, other pathology and Oncotype or Mammaprint scores. For many of us, the decision to take hormonal meds was easy and we dealt with bone issues if they arose, because cancer is life-threatening if it spreads.

Tamoxifen is another option for those concerned about bones, since it does not cause a decline in bone density and may even help with bones, since SERMS like Evista are used for osteoporosis. Here is one study:

"In the women given tamoxifen, the mean bone mineral density of the lumbar spine increased by 0.61 percent per year, whereas in those given placebo it decreased by 1.00 percent per year (P<0.001). Radial bone mineral density decreased to the same extent in both groups."

I did not experience any significant side effects from an aromatase inhibitor, nor did any of my friends. My only suggestion, validated by my oncologist, is to exercise more than 20 minutes: the pain goes away if you exercise longer.

I am finishing my 5 years after diagnosis but I had a no choice but double mastectomy DCIS. I agree with @windyshores. I was doing pretty well for the better part of 4 years. I would direct my yoga to where I was feeling pain or aches and it always made a difference. My doctors did prescribe Prolia for bones. Pain has been unrelenting for about the last 8 months so I recently stopped anastozole—only had to take it till end of May. I never fathomed being almost 70 now! My pain could actually be because I am 5 years older! But I am here…my recurrence odds are low, but who knows? Prolia also can cause aches and pains too, so it was a double whammy. I know people older than me who were on anastozole for 10 years and others who stopped after 6 weeks. You can choose to stop it unlike the cancer. Make sure you get a bone density test first. Check your vitamin D and work with an endocrinologist because they are experts about the pain and bones too. Wishing you peaceful decisions.

The surgery was pretty easy and I was scared out of my mind going in as I had never had general anesthesia. I also did 4 weeks of radiation which left my breast tender. But 3 months out it’s pretty normal. I may have been a little fatigued at end of radiation. Not so much that I didn’t break my leg skiing and in combination with Tamoxifen which I felt pretty good on developed a blood clot. So now 5 weeks into Femara. Most noted SE is vaginal dryness. I helped my sister in law through hospice at 61 with similar diagnosis who didn’t take the drugs. So I’m trying to avoid worrying about every side effect. I will be 59 next week. My aunt was 101 this week I want to be like her.

With regard to the vaginal dryness, my doctor suggested Good Clean Love moisturizing gel. I use it twice a day and it has worked wonders. Maybe give it a try. It is on Amazon and isn't terribly priced. You definitely do not need much. The instructions say to use the applicator, which would mean using way more than you need, so keep that in mind as well.

Thank you. Well said.
Bone loss is a huge concern for me. Unlike you I am going on at a half dose for 2.5 years if I can tolerate the drug. At 62 bone loss is a driver in the decision. Also researching enzymes, supplements that will stop estrogen creation without an AI

After 2.5 years I intend to cease the AI

After 2.5 years I intend to cease the AI because of concerns for heart health, bones, and joints