Dec 1, 2022 11:40AM maggie15 wrote:
weninwi: I'm sorry that you had progression after a short time on everolimus and fulvestrant. Hopefully your next treatment will work longer.
Dr. Bardia is my MO. I really like him because he is a caring person, willing to discuss the science behind everything, and objectively presents the pros and cons of different courses of action. Elacestrant came up in relation to my decision to skip the AIs for now due to their side effects and my situation. Elacestrant does have SEs (nausea and vomiting) but they are different from those caused by AIs and might be more tolerable to some people (like me who puts up with lower GI SEs from my anemia treatment.) He is hoping to do a clinical trial in the future with early stage bc patients since this drug might become an alternative to tamoxifen and AIs.
I never did chemo (oncotype of 24 so not recommended at my age), considered tamoxifen but ruled that out because of family history of stroke and an Italian study showing high incidence of DVT in women over 70, and nixed the AIs due to osteoporosis, osteoarthritis and an enlarging thyroid. I got through rads OK but six months later developed late stage radiation pneumonitis with progressive pulmonary fibrosis. My RO got me into the ILD clinic right away where they prescribed prednisone which contained the PF to my right lung. According to my pulmonologist I probably had subclinical ILD from micro aspiration of gastric acid (Barrett's esophagus and esophagitis/upper GI bleed 4 years ago) and should not have done radiation. It is not a contraindication in the current SOC like autoimmune diseases are. My doctor sees a 90% correlation in his practice (mostly rads for lung cancer) but nobody has been able to prove a cause/effect relationship yet. I'm currently on a high dose corticosteroid inhaler to lessen the debilitating cough. Thankfully I'm able to walk 3 miles on level ground (albeit at 3 mph rather than my previous 4) and am hoping my recently increased dose will help the SOB on exertion.
If you're interested in trying elacestrant, have you contacted Menarini-Stemline to see if there are any upcoming clinical trials? It's due for quick FDA approval and I'm sure they are trying to maximize its usage. Best wishes for finding an effective next treatment.