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DiscussionAnyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 days ago | Replies (808)Comment receiving replies
Replies to "Thank you for sharing your experience @captainterry. I have been advised by my Cardiologist to take..."
Hello @saurabhshrivastava20, and welcome to Mayo Connect. You will find that if you spend any time on here, you are not alone and the community really wants to share their experiences to help one another. There is nothing like Mayo Connect, and @jaymaysea has offered you some really good advice. Camzyos is relatively new, and therefore there is not a lot of history with it yet. It has been a "miracle" for some, and for others quite the opposite. One thing for sure is, having HOCM and trying to decide on trying a new drug versus open heart surgery or alcohol ablation is not an easy decision. From what I know, and I am not an expert, the alcohol ablation is not as controlled a procedure as a septal myectomy. Of course your doctor is the one who gave you your options, but I honestly feel you need to educate yourself as much as possible about HCM and the various treatments available so you can be your own best advocate. Take a poke around in here. You will find a lot of good information that may help you in your decision. Also, it is super important that your doctor is familiar with HCM, do you know if your doctor is specialized in treatment of Hypertrophic Cardiomyopathy? How long have you known you had HCM?
My specialist cardologist analogized an alcohol ablation to a controlled heart attack, because it destroys heart muscle. He also advised that in some cases a pacemaker may be necessary after the procedure. But, said it was an option. My regular cardiologist advised against an alcohol ablation and said it was not imprecise enough. She thought I should go straight to surgery.
When I first came to the group my question was whether I should try Camzyos or go directly to open heart surgery. I decided to give it a try. It is not for everyone. This is my second day. I am praying it works for me.
There is lots of really good information on this site. I encourage you to take some time and read over the comments. I think you will find them helpful in making your decision.