← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@karukgirl

Hey @starbuck41, thanks for sharing your information here. I'd like to thank you for your service to our Country as well. The VA is an interesting institution in what they chose to support or not support. My dad was a WWII veteran, serving on a mine sweeper during the war. I had many encounters with the VA taking him to our little center for all sorts of things. I hope the best for you beginning this new drug. Following some of the other folks here it sounds very promising. It takes courage to try a new drug not knowing how it may affect you. It sounds like from the others on here there is a little transition in the beginning. High elevation is very hard on HCM people, so there is that too. The drug was not approved yet when I had my surgery, but I can tell you this...I would have liked to have had a chance to at least to try it. I can also tell you that nobody, no, not one person, would want to have open heart surgery, but if your choice comes down to surgery or living half of a life because of HCM, choosing surgery is the best choice. I had the best care on the planet at the Mayo Clinic in Rochester. I'm only mentioning that because should the Camzyos end up not being your friend, not to fear surgery. Have the VA doctors got a plan for close follow up? You mention that all eyes of the VA are on you and your doctor, will they be following your doctors recommendations?

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Replies to "Hey @starbuck41, thanks for sharing your information here. I'd like to thank you for your service..."

I am the only veteran in the VA health system countywide that is getting this drug, my case / condition is being reviewed/watched by about 200-300 doctors for potential treatments for other veterans. Cardiologist appointments every 3weeks, ecg’s every 4weeks for the first 6months..
My understanding should this be successful that many vets will benefit and begin to get the same treatment