Faslodex in oral form: Hello everyone... - SHARE Metastatic ...

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Faslodex in oral form

Equinix profile image
20 Replies

Hello everyone throughout this World

I am at present on Faslodex injections and have been for nearly three years.

I do remember reading a post about the introduction of Faslodex in oral form being used by someone in the UK and was wondering exactly how many countries have adopted this procedure worldwide. Know the FDA approved it some months back - well done FDA.

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Equinix profile image
Equinix
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20 Replies
Nocillo profile image
Nocillo

Haven’t heard anything about this, but what a relief this could be for so many! I had 6 years of those shots and I don’t miss them!

friesianfan profile image
friesianfan

Greetings!

Elacestrant (now being marketed as ORSERDU) was approved by the FDA in January 2023 for patients with ER+ HER2- MBC and having the ESR1 mutation. See: fda.gov/drugs/resources-inf....

This is one of more than a dozen oral SERDs that are/were under development and in clinical trials over the past few years. My wife and a number of other patients on this site participated in successful trials of these drugs. Some drug manufacturers have stopped working on their competing candidates as Elacestrant was in the process of being approved but others have continued their development programs as this appears to be an important category for the future.

You can see more info by searching “oral SERD” in the search bar on this site, or just Googling similar terms.

Good luck!

Dave

R7777 profile image
R7777 in reply tofriesianfan

thank you for letting us know! I just read about it and it comes with some heavy side effects. Was your wife having hard time? Also- did it help completely her cancer? Many thanks 🙏🏻

TammyCross profile image
TammyCross in reply toR7777

I was on an oral SERD for a year in a clinical trial and had NO side effects. In fact, I felt terrific. -- I can't take the only one approved in the US because I do not have the ESR1 mutation. I assume it is about the same in terms of side effects. I was also NEAD while on it, until I wasn't. The pharma producing the one I was on dropped it after Phase I trial. They had something more lucrative for prostate cancer in trials.

R7777 profile image
R7777 in reply toTammyCross

of course.. big pharma..

thank you for your reply

Pbsoup profile image
Pbsoup in reply toTammyCross

Interesting.... good to hear this--although not about the big Pharma part.

Pbsoup profile image
Pbsoup in reply tofriesianfan

How did she do on the trial? I am curious to hear from those women as there are so few of us on it at this point.

Lnlc profile image
Lnlc

Hi! Based on the guardian test I qualified for this medicine and I’ll start it on Monday.

I was diagnosed in 1995 and was discovered metastatic in 2013. Pretty much exhausted all my chemo options. I had read (on here?) about having hormonal treatment after chemo can jumpstart the treatment protocol. Last treatment was Enhertu

If you have experience on ersodu could you please let us know how you’re tolerating it it and any side effects

Your help and support is so appreciated xoxo Ellen

If you’ve been placed on

Jhshl512 profile image
Jhshl512 in reply toLnlc

Hello. I just started Enhertu. Just curious, how long were you on it?

Lnlc profile image
Lnlc in reply toJhshl512

hi- was on Enhertu for about six months and then the oncologist and I agreed that it did what it was supposed to do: back up the cancer in my bones and lungs. Unfortunately there was a little progression in the liver but she wasn’t concerned as much about that since as she said it’s a big organ and could tolerate more.

For me the side effects were ugly, mostly fatigue that kept me pretty much bedridden bedridden but I always seem to get se times 20. The good news is that we took a chemo break after and took two family vacations because I felt much better.

I wish you very success on this drug! Xoxo. Ellen.

Jhshl512 profile image
Jhshl512 in reply toLnlc

Thank you Ellen! I’m going for my 2nd infusion today. So far so good. My only problem is I don’t sleep at night. I only take short naps during the day. I really don’t know if this is a side effect. Other than that I feel pretty good. I guess I should assume the fatigue will get worse. We would love to go to Ireland at some point. Hopefully that will happen. Sorry my reply is so long. It is now 3 AM and I can’t sleep so this is what I do. Thank you again, Lori 🙏🏻🙏🏻

Lnlc profile image
Lnlc in reply toJhshl512

Lori, . If you get this message twice. I apologize bc I’m not really sure what happened to the first one. And no need to apologize for the hour. It’s about 3;30 here est. I tend to go the the br frequently in the wee (pun intended) hours of the morning. Luckily with pandora I can usually fall back to sleep pretty quickly and I bet your body will adjust its sleep cycles the longer you’re ion the med xoxo elem

Wishing that your travel plans work out!

Pbsoup profile image
Pbsoup in reply toLnlc

How are you doing on Orserdu? Am conducting a straw poll as I am starting today!

Lnlc profile image
Lnlc in reply toPbsoup

hi! Thanks for checking in. Unfortunately I had to go off this med (hormone) because the side effects were bad for me. Increased and dibitating muscle weakness. Extreme fatigue and nausea. The onc and palliative doctor had all agreed at this point that the only things we can do should try to make me feel better. Best of luck and sending hopeful thoughts. Ellen.

NShaft profile image
NShaft

I have been on Orserdu since March and I find it very easy to tolerate. I had a queasy stomach in the beginning but really no side effects now, other than occasional fatigue.

GratefulThriver profile image
GratefulThriver in reply toNShaft

What type is that med for?

Gingerann1 profile image
Gingerann1

it was approved in Feb. I asked my Onc about it and he said there wasn’t enough data to recommend a switch for me. I hope it doesn’t take too long if it’s the right move . I know my hips will be thankful!

lynzer profile image
lynzer in reply toGingerann1

My doctor said something similar. They need to check the original pathology reports to check the HER levels.

TammyCross profile image
TammyCross in reply toGingerann1

Most of the standard treatments do not work on ESR1 mutation. If you have that, you should be on this.

Gingerann1 profile image
Gingerann1

thank you! I will ask about that mutation at my next visit on Tues this week.

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