Calling all Elacestrant (Orserdu) users how are you doing? How are your scans please share.

[DDIL1]

Hoping to hear how others are doing on Elacestrant! Please share your experience.

[NShaft]

My scans were stable with some improvement.

[Empire501st in reply to NShaft]

I was doing good, my insurance stopped paying for it.. so upset

[NShaft in reply to Empire501st]

why do you suppose that is? It is very expensive but standard of care I think.

[DDIL1 in reply to NShaft]

good to hear!! Glad it’s working - did your tumor markers increase ?

[NShaft in reply to DDIL1]

mine didn’t. I have always stayed with a 35-45 range so my markers really don’t tell me anything.

[Lilsusie]

I have been taking Orserdu for three cycles. So far the main side effect is lack of energy. I always take with food. The first cycle I had a bit of nausea, but that has subsided. I have scans scheduled for next month. Praying for a long ride.

[DDIL1 in reply to Lilsusie]

keep us posted on the scans I hope you get good results! Did your tumor markers increase on this?

[love2golfwell]

Hoping you will receive many positive comments about this med!

[Half-Full]

My wife has been on it for almost 3 months. Tumor markers were still increasing after the 1st and 2nd month but not nearly as rapidly as they were before she started it. We don’t have her 3rd month labs yet.

Her lungs and liver seem to be doing better, but she’s had more pain from her bone metastases which seem to be a bit worse.

So it’s definitely slowed things down and quality of life is certainly much better than it was while she was on her prior treatment with Gemzar which didn’t work at all.

We’re hoping for continued improvement.

[Half-Full]

As an update, my wife’s tumor markers just dropped substantially after completing 3 months of Orserdu. Her CA 15-3 dropped by ~20% and her CA 27.29 dropped ~30% since last month. This is the first time her tumor markers have dropped in 6+ months.

As I mentioned above, her tumor markers continued to increase for the first two months that she was on Orserdu, but they were increasing at a much slower rate (~20% increases as opposed to doubling). After 3 months it seems like Orserdu’s efficacy is significantly improving for her.

So my advice, for what it’s worth, would be not to get too discouraged if you don’t see immediate drastic improvements with Orserdu. If it just slows the rate of your tumor marker increases at first, and your scans remain relatively stable, that’s a positive sign and it may show more significant improvements down the road.

This is the first good news we’ve gotten in quite a while.

I hope this gives some of you more comfort/hope in comparison to what you may be reading on the FB Orserdu page.

Wishing you all the best.