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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (736)Comment receiving replies
Good morning boatsforlife! I like your username-we are boaters too! We are supposed to be going sailing today, but it's been raining, so probably not. I haven't posted for awhile. I am glad that karugirl got me going today. I started Camzyos March 30th and have my life back!!! Just realized it's been 6 months today! I am so thankful every day! I couldn't do any of the things you mentioned above before I started taking Camzyos. I also felt immediate effects, within a couple of days. I don't think you are imagining it! I have now lost 17 pounds too! I had put on weight because I couldn't do any of my regular activities but now am as busy as ever!! I am playing pickle ball, sailing, doing water aerobics class, playing golf etc. My doctor told me last week he wants me to start doing the weight machines, so I walked up a big flight of stairs-which is HUGE-and didn't get out of breath-and did the machines and the bike for the for first time in a long time, for an hour. I am so so thankful I can do this! It sounds like you will too-soon! I live in Southern California, by the beach, so the weather is pretty much in the 70's much of the year. I want to snow ski again too. I am 58 and going to retire at 60, so that is a great motivator to get the rest of my weight off! Keep us up to date. You've got this!
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@kelliw - I had to retire 4 years ago at 55 because physically I just couldn't do it anymore - and was mostly office stuff. I actually LOST 30 pounds over the last 18 months. I feel so much less crappy if I don't eat. Not the best weight reduction technique but I'm at a good weight now. Hopefully I can keep it off when/if the wonderdrug does its thing. Wish I could be in a location like you with access to water & sailing all year long. I live in a desert so having built 8 small boats I get nothing but mockery and "Noah" jokes. But I doubt I'd be taking my wee craft(s) out on your stretch of water.
@karukgirl - 116F? Nah - you can have that. All what you're used to I guess. Part of my childhood was spent in Yukon, so to me this seems pretty mild most of the time.
And @jennywilliams - first chemo then HCM? I never want to run into you in a dark alley - I'd be afraid you'd kick my a**! I know some people see improvement in a few days, some months later, and unfortunately for some it either doesn't work or makes things worse. I had pretty much resigned myself to my "new normal" and had given up hope of ever tracking down and treating what was ailing me until a month or so ago. Now it looks like the light at the end of the tunnel may not actually be a train heading my way. Give it a chance? You bet I will.
Heart failure? Scary. Heart surgery? Scary. HCM? Scary. Brand new drug? Scary. Lots of people sharing their stories and encouraging each other so they realize it's not just them on their own? Priceless! I noticed a lot of that when I was reading through the backlog of messages. Thanks to all of you who offer each other encouragement.