I’ve been taking a trial drug, AC699, only for 2 weeks now, but WHAT a difference in my energy levels!!! I’m ecstatic!!!!❤️❤️❤️ I’m taking over chores in the house that I haven’t been able to do for years! I’m getting out of bed early just to get to work! My husband has been wonderful, but his level of clean and mine are a bit different. I was even out raking leaves the other day. I certainly hope my scans will reflect good news as well, but this new -found energy feels like the fountain of youth to me. 🤞I still need rest periods, but the leaden blanket of fatigue has been lifted, at least so far. 🤞🤞🤞I know many of you will understand completely! Thanks for listening!!! Good luck to all!!
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Aww that’s FANTASTIC !!!! , I know exactly what you mean , about fatigue, how lovely for you to feel so good , after just 2weeks, Thankyou for sharing this great positivity with us and long may it continue , ❤️
So pleased that the trial drug has made such a difference to your quality of live and putting it out to the universe that its kicking cancers butt as well.
That's fabulous news! I'm so happy for you. I hope your next scan shows it is working on your cancer and being in a trial you will be monitored closely. Thanks for sharing your fantastic news. Take care.
So happy for you! Fatigue is the worst! And people without cancer fatigue don’t understand. They think we can just rest and recharge. It is a real blessing for you to have that lifted. Great news! For anyone out there reading this with fatigue… my suggestion would be to ask for Provigil (modafinal) a drug used for narcolepsy and helps with chemo brain and fatigue from cancer.
I have questions please after reading about Provigil. How often do you take it? What if any side effects do you notice? It appears to be a drug that can be used for ADHD too. I am not ADHD but can be high strung. I avoid stimulants like coffee for that reason. I wonder if this would cause me problem.
I have noticed a lot more fatigue since I switched medicine to TRUQAP. I had it before but this is more. Any other detail you offer is most appreciated.
I haven’t needed to take it daily but it works well to perk me up and much clearer thinking… cuts through the brain fog. I found out the hard way that a low dose is best. I get the 100 mg and cut them in half… it has a 12 hr half life so take in rh morning and this allows me to sleep well at night. I can be so helpful for long days like weddings!
Maybe I missed it... Tell us more about your type of cancer, past treatments and the drug you are currently trying. We are all looking for new treatments and hope.
I’ve had metastatic to the bone since March of 2015. Started on Faslodex and Anastrozole for 6 1/2 years. Then it went to my stomach. I have ductal and lobular. Took Ibrance and Tamoxifen for about 2 years, then Verzenio and Letrozole for about a year. Turned up in my stomach again this past summer and doctor thought a trial would be a good idea. Took the Guardant blood test and I have a few mutations, which are ok for the trial I’m on. It’s a phase one and all I know is it’s called AC699. Supposed to be an estrogen crusher. (Can’t remember the real word). I wasn’t on any meds from August 26 until October 1. Sorry I don’t have my mutation list with me just now.
Wow, you have done well. I hope you continue to do well and this drug is a great help to lots of people. Thank-you for being willing to participate in a trial. You are helping all of us.
Did you have lobular from your first dx? Or was it just once they found it in your stomach? I had scans in August which showed ascites around my liver (that has mets). And during my month off between treatment types I needed an MRI to check my pelvic bones. I saw in the report that by then I had ascites in the pelvic area. In the back of my mind I have silently wondered if I might have developed cancer in the tissues of the abdominal area that they can't see in the CT scan. And did you have specific symptoms that led to them finding cancer in your stomach?
It's wonderful, and quite amazing to hear of your quick energy rebound on the trial drug! I hope it proves to be a great drug for you!
I just had my #2 of Enhertu today. I’ve found the drug ok to deal with (fatigue and constipation were my biggest issues) but just a few mins ago I was reviewing my blood results from today. Much of it is worse, including the TM 😭 Weird really because all last week I felt great, my normal self, and I’ve had no pain since I started this drug. I’m really worried about my liver. I guess I need to do some research of how high the liver numbers can go to still be “ok”
I don’t know much about the new ADC’s… do they usually work quickly? 2 infusions isn’t much to turn the ship around as my oncologists says.. feeling well is half the battle. I feel well during the day and then stomach issues. That is worrisome to hear that you have fatigue after just 2 cycles. I really don’t like fatigue.
AC699 is a potent and selective orally bioavailable, chimeric degrader of estrogen receptor (ER) α, and offers a potential new breast cancer treatment option based on a differentiated mechanism of action as compared to fulvestrant and novel SERDs with deeper ERα degradation as demonstrated in preclinical studies. AC699 is currently being evaluated in an ongoing Phase 1 clinical study as a single agent for the treatment of ER-positive / HER2-negative locally advanced or metastatic breast cancer (NCT05654532). The primary objectives are to evaluate the safety and tolerability of AC699. Secondary and exploratory objectives include pharmacokinetics, preliminary efficacy and pharmacodynamic evaluation. The study uses a 3+3 dose-escalation design, with once-daily oral dosing of AC699 at 100, 200, 300, 400, and 600 mg.
Phase 1 Study Results:
As of April 8, 2024, 29 participants were enrolled and treated with AC699 at doses ranging from 100-400 mg. The participants had a median of 5 (range 2-10) prior lines of therapy, including 3 (range 1-8) prior lines in the metastatic setting
The objective response rate was 21% (4/19) and increased to 50% (4/8) for those who had an ESR1 mutation
There were no > Grade 3 drug-related adverse events (AEs), no dose limiting toxicities, no discontinuations and no dose reductions due to AEs
AEs related to AC699 occurred in 38% of participants and included nausea (14%), hot flush (14%), and fatigue (10%)
The maximum tolerated dose had not been reached yet.
Kerry, as always, you provide invaluable information. I am so grateful for your good will and research. I have not been on this site for a month and found today this post re this promising trial and your invaluable info. Thank you so much. Best wishes!🌻
Wow that sounds very interesting. I've been on Trodelvy infusions for 6 months and my energy levels have gone down to minimum and had to give up my business. So hearing your news is very exciting for us all. Hope it continues for a long time 😍
We always love to hear about possible new treatments! Your description of “leaden blanket of fatigue” is right on and a med that allows a return of energy is exciting.
That's incredible and wonderful to hear! I love the idea of new drugs coming out that reduce the side effects and after just two weeks. Thanks for sharing your experience.
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