1. < Hypertrophic Cardiomyopathy (HCM)

Clinical trial

Posted by rmhc123 @rmhc123, 16 hours ago

Hi, my name is Rachelle and I’m unsure if I am already a member of this group. I have nHCM (non-obstructive) and currently a part of a clinical trial study at Emory University in Atlanta for the drug Aficamten. Is anyone else here taking part in this trial? It’s a little frustrating because it is a double blind study.

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manuelpo | @manuelpo | 13 hours ago

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.

REPLY
1 reply
rmhc123 | @rmhc123 | 12 hours ago
In reply to @manuelpo "Hi Rachelle rmhc123@rmhc123, I have been on this group (HOCM, mavacamten = Camzyos) for around 8..." + (show)
@manuelpo

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.

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Thank you!

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1 reply
manuelpo | @manuelpo | 11 hours ago
In reply to @rmhc123 "Thank you!" + (show)
@rmhc123

Thank you!

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You are welcome!

REPLY
boatsforlife | @boatsforlife | 10 hours ago

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.

REPLY
1 reply
rmhc123 | @rmhc123 | 8 hours ago
In reply to @boatsforlife "Hello @rmhc123 . I don't have anything to offer you on the aficamten trial. It must..." + (show)
@boatsforlife

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.

Jump to this post

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

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