Trial drug AC 699

[Nocillo]

Hello all, Before the holidays I said I would keep you informed of my situation on the trial drug I started in October. After some initial trouble due to having to change anti-anxiety due to contraindications, and then some recurring issues from an MRI and a cold, I am happy to report that I’m starting the new year in a very positive mood. My energy is the best it has been in 10 years! It’s like a whole new life! I still get tired after working for a bit around the house, but I rest for a bit and then go back to my project. My husband kept up well enough over the years, but now I’m really able to purge the clutter and really get into cracks and crevices that he rarely sees. I’m clearing out things that have been sitting for too long and trying to streamline methods of doing things that will make it easier for us in the coming years. It feels so good to be able to contribute again and try to simplify in case things take a turn for the worse. It’s really changed my outlook and I’m thrilled. Hopefully this drug will be approved and more people will be able to profit from less fatigue and less bothersome side effects!! Hoping for continued success!! Wishing you all well!❤️

[JEE123]

That is amazing and wonderful.

[jersey-jazz]

It reads as if it is the wonder drug. I,and I presume that those of us that have similar cancer concerns, am thrilled to read of your success with the trial drug AC 699. Well done, you!

[Nocillo in reply to jersey-jazz]

Let’s hope it is the wonder drug!🤞🤞

[Discocat]

Thank you for keeping us updated and thank you for having the courage to trial a new treatment that will hopefully benefit many in the future😍

[Nocillo in reply to Discocat]

You’re welcome. Any good news means hope!

[Hazelgreen]

WoW!!

It was lovely, Nocillo, to read that you are doing so well! Best energy in ten years is something we all could use, I'm sure.

Thanks for sharing, Best of Wishes, Cindy

[Nocillo in reply to Hazelgreen]

Lack of energy is so defeating on top of everything else isn’t it?

[bikebabe]

pleased for you (and us longer term). Thank you

[Nocillo in reply to bikebabe]

You’re welcome. I hope it does help many others and the sooner the better!

[Artesa]

I am thrilled for you and cannot believe the changes it brought to your life! Would you mind sharing what type of breast cancer you have and after what treatment did you enter the trial? Do you have to mention the trials or does the doctor recommend them to you? I'm so glad you had the courage to try it and now look how positive you are!! May it continue for a very long time!!

[Nocillo in reply to Artesa]

I started out with ER+ HER2-. I was tested for mutations in August 2023 and had none. I was tested again in August 2024 and have 3. One of them is ESR1 (I think that’s right. The results are buried under a mountain of paperwork. I’ll look for it tonight.) Previous treatments have been Anastrozole and Fulvestrant, ibrance and tamoxifen and Verzenio and letrozole. Then my doctor thought I was running out of options, so she suggested this trial and with my mutation results it was a good fit. Turns out I could have also used her next recommendation also (can’t remember it) but we’re holding it in our back pocket for now. I’m sorry my memory doesn’t retain too many details. Once I’m on a new regimen and out of the doctor’s office, I seem to forget things. I try to not focus too much on it if things are going well. I actually was very leery of doing a trial because I thought it would consume too much time. But after 2 sessions of 1 1/2 days each, I only go in once a month for a blood draw and doctor visit. Scans are every 8 weeks which is more often because I was on every 12 weeks, but hopefully I can go to 12 weeks again if I continue stable. Also, the drug is free, so that being out of the equation is huge! Thanks for your reply.

[Artesa in reply to Nocillo]

Hi Nocillo and thank you for your detailed response! It's heartening to hear you have been offered two options and this one seems to be working wonderfully. I'm rooting for you and so glad you are pioneering a clinical trial as it helps everyone.. hugs and sending good energy your way!

[love2golfwell]

I am so very happy that this medication has worked such wonders for you! That is great. I hope it continues to work well for a long time and that it becomes available to everyone. Please keep us posted. Sending you hugs and prayers.

[LibraryGeek]

I can’t imagine having that kind of energy now! So great to hear, thanks for sharing and I hope you stay on it for a long time.

Jackie x

[Kerryd22]

The drug has received fast track designation from the FDA so hopefully results continue to be good. It’s for ER+ patients with an ESR1 mutation and it’s proposed to be used after a failure on one line of an inhibitor as opposed to using a SERD.

onclive.com/view/fda-grants...

Ironically considering Nocillo’s experience, fatigue is a listed side effect

[Bella_mum in reply to Kerryd22]

Is this Elascestrant?

[Kerryd22 in reply to Bella_mum]

No. It’s got no name and I’ve never seen it referred to by a name. Elacestrant is a SERD.

pmc.ncbi.nlm.nih.gov/articl...

[Nocillo in reply to Kerryd22]

Thank you for your knowledgeable replies. I read my reports, classifications etc. Then after I understand them in the moment all of the information goes straight out of my head. It’s been 9 years and 10 months and in the beginning I was much more concerned with all of the details. Now I can’t keep it all in my head and it doesn’t bother me. At each step I pay more attention and then it goes out of my head fast! Chemo brain? Thank you!

[Kerryd22 in reply to Nocillo]

Me too! I’m ten years in May. I’ve relaxed a lot more since 2015. Every day I wake up is a blessing. There’s no point in destroying that feeling by constant worrying.

[Nocillo in reply to Bella_mum]

No. So far the name I know is AC699. Sorry

[Totheriver]

That is amazing news💕

[Bravespirit]

Thank you for sharing the good news! This is so encouraging. I fit the profile and would be a candidate for the drug if it were to be approved. I appreciate your courage and willingness to participate in the trial.

[SKoter]

Very happy to hear that you are doing so well! And it’s encouraging for me, too. Thank you for sharing! Sending you lots hugs 🤗

[Photo-Bug]

The energy report is wonderful.

[mkrienke55]

Thank you for sharing that news and for participating in a trial. I am still on my first line of treatment but plan to try to get into a trial if I need to change drugs.

[CTGirl1962]

This is such an encouraging message!!! I am so grateful for it!!! Can I ask what it is you’re taking and where? I’m at Yale Smilow in CT and want to keep this in my back pocket just in case Enhertu decides to fail me!!! 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

I am thrilled for you and your “new” life!!! Good Bless!!! 🙏🏻🩵🙏🏻🩵🙏🏻

[Nocillo in reply to CTGirl1962]

All I know is they call it AC699. I go to Florida Cancer Specialists and Research Institute in Sarasota FL. I was going to Moffitt Cancer Center in Tampa, but this particular study is in Sarasota. It’s farther from my house and that was a big decision, but I only go once a month. It’s not bad, but at this point I dread any appointments that take me into the cancer world.😬 I believe there are several other cities with this same study but I can’t tell you what they are. Maybe if you look up AC699 you can find more information or ask someone at your facility who deals with trials. Thanks.

[CTGirl1962 in reply to Nocillo]

Thank you so much!!! I lived in Ft. Myers during my first round with cancer back in 2010. I loved my Florida Cancer Specialist team!! You are in very good hands!!! I’ll check to see if this is offered up here. I don’t know if I have any mutations, so there’s that I have to figure out, as well. 🙏🏻🙏🏻🙏🏻

[Cowgirl1951]

Thanks for sharing your good news. It's good news for some of us too!