Clinical trial

Hi Rachelle rmhc123@rmhc123,
I have been on this group (HOCM, mavacamten = Camzyos) for around 8 months and a while ago someone posted here participating in the aficantem clinical trial (not sure if it was phase 2 or phase 3). Hopefully someone will show up here just put a message once in a while till the right patient in that clinical trial shows up here.
I understand your frustration, but for what I have studied the molecular structure of the aficamten appears to be more promising than the one I take the mavacamten (Camzyos) that I am taking now for almost 8 months. Further, it appears aficantem can have less potential side effects/drug interactions than the mavacamten. Just be patient and keep going on that research that I understand you don't know if you are taking the placebo or the aficamten. I knew the clinical trial aficamten 3rd phase is getting close to the end of the study so hopefully the FDA can make a decision on that drug.
For now this is all I found:
Conclusions
Among patients with symptomatic obstructive HCM, treatment with aficamten resulted in a significantly greater improvement in peak oxygen uptake than placebo. (Funded by Cytokinetics; SEQUOIA-HCM ClinicalTrials.gov number, NCT05186818.).

Good luck to you and I hope you feel better.

Thank you!

You are welcome!

Hello @rmhc123 . I don't have anything to offer you on the aficamten trial. It must be frustrating not knowing whether you are getting the good stuff or not, and even if it is the good stuff - will it do what you need? I'm lucky enough to be on mavacamten, but only because there were people like you who were willing to put themselves on the line in trials to help develop these new medications for people like me. Mavacamten/Camzyos has been life changing for me, and without any negative side effects, so I don't know if I will ever need aficamten, but there will probably be tons of other people who will. Thank you, thank you for being courageous enough to help pioneer a new product that stands to help many, many people. And I send you double-good-wishes for success in your own treatment.

Thank you for the reply. I am happy to hear that Camzyos is working for you. That is very encouraging!

I am currently on the trial drug aficamten. I go to the hospital tomorrow for my visit.

@hillbilly1065 Good luck with your visit. Please keep us updated. Is it still a double-blind kind of trial or do you actually know what you are getting? If we have 1000 people on this HCM forum, I'm willing to bet 900 of us are keenly interested in the possible arrival of another medication. As I've said to others on this forum (including just above), I have great admiration for people like you who are willing to put yourselves out there for research to benefit so many other folks like me!

How long have you been on it and do you feel any improvements? I’m in my 5th month of the trial.

A little about my health. I have HCM with obstruction, I have had 3 ablations over the past few years. I have an ICD. I started the doubled-blind trial on 01 March 2023. Then started the active drug (aficamten) on 19 February 2024. I haven't got the double-blind results back yet but I believe I was on the Placebo. Prior to taking the active drug my life style was very limited. Since taking the active drug I have noticed great improvement. As I a stated in my previous post I was at my hospital yesterday for my 12 week follow up. I was going approximately once a month last year but now the visit are getting further apart. I was notified yesterday that I can now televisit if no issues but will have to come in 6 months. I was also told that they will be adding an additional 900 people for the trial worldwide and in hopes of the FDA approving aficamten this fall. I'm not sure that will happen but I think they are working toward that date. Even though I am feeling better and in my opinion doing well the echo yesterday showed my gradient level had increased. My doctor had concerned about this and mentioned the septal myectomy . I still have to process that though. I am currently taking 20 mg per day with no side-effects for myself.

I am very new this this forum stuff, so if I have left any thing out anyone wishes to know please just tell me. If I provided to much information let me know that as well. If I can provide anyone with more information just ask, I have found it is hard to find information on HCM especially personal details that are not readily available.

When were you told about whether you had the trial drug or the placebo? Also, I’ve been told there is no guarantee that I will receive the actual Aficamten when the study is included.