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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 days ago | Replies (808)Comment receiving replies
@nanakpm, welcome to Mayo Clinic Connect! Thank you for sharing part of your story with the Hypertrophic Cardiomyopathy group. I'm so glad to hear that you are feeling better and more confident in Camzyos every day. You have six weeks experience. Others are only a day or so and some others are a few years into it. You will find that if you spend anytime reading on here, that you and the Camzyos group is pretty active, and very willing to share each other's experiences with the community. Every person is an individual and therefore each person will have a different experience. We are so unique! I had open heart surgery at Mayo in Rochester two plus years ago. Camzyos was not an option for me. I would say to anyone who may not respond to Camzyos not to fear open heart surgery as an option if the drug does not work for them. True...it's a BIG surgery. It's not something anyone who has to have it wants to have it. But you are already brave! You are trying a new drug without knowing how your body will react, or what side effects you may experience. That takes courage too. When were you diagnosed? Is your cardiologist familiar with HOCM/HCM?
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Thanks for your reply and encouragement, especially about open heart surgery. Like several others on this site, I was shocked when my cardiologist suddenly blurted out "you need open heart surgery" when I went to talk to her about Camzyos. I am sure there is a better way to share that opinion. She did not recommend Camzyos because it is new. Yes - it does take courage to be in the forefront of trying a new drug. And it is an adjustment for physicians to embrace a new paradigm of treating HOCM. If indeed my kids have inherited the gene, I am happy to contribute to knowledge about a non-surgical intervention. Not everyone has access to surgeons who have the experience and track record of doing myectomies successfully so Camzyos may be a safer treatment for many. I was diagnosed about 7 years ago, having had a bout of viral myocarditis 3 years earlier. Managed on a calcium channel blocker and then added Rythmodan. I am fortunate that I live in a place with world class expertise in HCM (Toronto) including an excellent surgeon who specializes in myectomy. And even more fortunate that my husband, a professor of medicine, saw reference to mavacamten in the literature, and encouraged me to explore it as an option. The doctors at the HCM clinic here were not offering it a few months ago (January), and recommended open heart surgery. but I think they are now offering Camzyos as an option. I don't know how patients find out about it unless they read medical literature, or have doctors who are open to trying it.