Update on trial drug AC699

[Nocillo]

Hello all,

On October 1, 2024, I started a drug trial protocol AC699. This past week I had my first scans and tumor marker blood tests. The scans are stable with possibly two tiny liver lesions becoming even smaller and all of my tumor markers have reduced greatly. The doctor was very happy with the results, as am I!! The only problems have been having to change my anti anxiety medication due to contraindications. That has been a challenge to get a decent balance back. Also, this past week I’ve had a cold which is now bronchitis. So, I cannot give a full, clean report of how I feel until I get the cold and dosing of anti anxiety worked out. However, the blanket of fatigue is gone, no diarrhea, no pain, no evidence of typical side effects. I can’t wait to get to the point of only the trial medication affecting how I feel and hopefully it’s as good as it seems to be. I was never a huge proponent of trials, but this is changing my mind. Wishing that you all can enjoy the holidays with some level of comfort and peace in your home. Happy holidays!!!

[Iwasborntodothis]

Thank you for this report - this drug is on my list to discuss with the doc.

[Bettybuckets]

so happy for you and the hope you feel. Amazing! I am having the opposite.. I have had some heart issues that needed attending so we had to stop chemo til that got sorted… but now the shit is hitting the fan so to speak. Weird but I can’t wait to get back on chemo and have hope of relief soon!

[Nocillo in reply to Bettybuckets]

Thank you! I hope you get relief SOON. No one needs problems besides the cancer. All best wishes.

[Totheriver in reply to Bettybuckets]

Hopefully they will get things sorted out for you soon Beth💕

[Totheriver in reply to Bettybuckets]

Hopefully they will get things sorted out for you soon Beth💕

[Lulis]

Always great to hear some good news! I hope you continue to receive good news from this trial drug. Happy Holidays!

[LibraryGeek]

Always good to hear about a promising new drug- hope you continue to do well on it x

[love2golfwell]

So glad you are having good results on this trial medication. Hope your other issues get cleared up soon. Enjoy your holidays. Sending hugs and prayers.

[Totheriver]

so happy for you💕

[Tuckermom]

Sounds SO promising...so nice to hear when something is going well for someone....gives the rest of us hope for the same. Keep us updated and Merry Christmas!

[fancydog]

Sounds so promising, thank you for sharing your good news with us!

[mariootsi]

Continued success with the trial.Hope your other issues clear up

[Bravespirit]

Thank you for sharing. It is always so encouraging to hear that treatment is going well for someone. 🙏

[Yikes123]

Good for you! I’m glad you have this option.

I may start a phase 1 trial for targeted immunotherapy to address increase in liver Mets.

I feel fine but TM and scans show it’s time for a treatment change I was on Ibrance for 5 years, then TRUQAP for 1 year

I am curious how “labor intensive” your trial is. How much time do you spend at the hospital for monitoring etc? Do you have long days in the hospital? Do they dial down monitoring over time?

Thanks

[Nocillo in reply to Yikes123]

The first two visits consisted of one long day of intermittent blood draws and EKGs. They put me up in a hotel overnight because I live 2 1/2 hours away from the doctor. The second day was a blood draw and one EKG and then I went home Those visits were two weeks apart. Now I go once a month and get a blood draw and another EKG and see the doctor. My monthly visits last about 1 1/2 hours. I get a CT scan every two months and a bone scan. My trial is 4 pills every day and I take them all at the same time. then I have to record what time I took the pills and take that paperwork back when I go every month. So , Not much time spent after the initial month at all. I would not have done the trial if it was more than that due to the distance from my home and I didn’t want to be tied down. I can have my scans closer to my home and then they send the information to the trial Dr. Sorry if this explanation is a bit disjointed. I know every trial is different, but I hope you find one that suits you. Good luck!

[Yikes123 in reply to Nocillo]

Thank you!

[Cowgirl1951]

Happy for your results and no side effects. Hopefully you will be over your cold soon.