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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (807)Comment receiving replies
Hey there @boatsforlife, WELCOME to Mayo Connect! There are several folks on here from up north in Canada, and if you have been "lurking" long enough to read their stories, like @hansj, then hopefully they can help you navigate the system as you begin your Camzyos journey. Sounds like you are one of the majority of us HCM/HOCM people who are incorrectly diagnosed for a long time. It really is eye opening to find out that you knew you had something wrong, and get treated for something you didn't have. I am glad you are here, and glad you shared your thoughts with the group. Canada is big...where are you from? Is your new cardiologist up-to-date on all things HOCM? What are some of your concerns about starting Camzyos on Tuesday?
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Hi @karukgirl, thanks for the welcome. I'm in a small Alberta town 450 miles straight north of Yellowstone National Park. It's funny you ask about what concerns I have. After chasing one false lead after the next, getting my hopes raised then dashed for 17 years - my biggest concern is just going through that cycle again. Maybe I should be more worried about the heart failure business but it seems to me I've been living with a form of untreated heart failure all this time anyway, and now I'll be under a microscope. Not sure how up to date my cardiologist is on HCM but he is very attentive and responsive and I feel quite confident in him. I think I'm his first Camzyos case. For now I'm hopeful but trying not to let myself get optimistic. Time will tell.