Anyone take new drug Camzyos (mavacamten) for HCM?

Hi! I just answered a long answer, then read this-I was scared too with all of the heart failure warnings and I was also my cardiologist's first patient. He is the only dr. in the practice of 9 cardiologists that is having his patients go on Camzyos. It was a lot of work for him at first, but now he has the system down and has recommended other patients to start as I have had such great success on it. 🙂 It sounds beautiful where you live! I love Yellowstone!

@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.

Hope these are encouraging words.

Heck yeah! 81. Fighting off heart issues. Fought off surgery. Fought off cancer. Fighting off HCM with a brand new drug. And still with a positive, thankful attitude? I wanna be just like you when I grow up!

Do you see what I mean @boatsforlife? What a wonderful support group this is...I love how people reach out to offer hope, share their journeys, or virtually hold your hand and cheer you on. I hope going forward you get great results with Camzyos too. @hansj is another fellow Canadian who just began Camzyos not too long ago, and perhaps reading his story will encourage you as well. Every person is different, and no two Camzyos journeys are alike. Some are similar, some are disappointing, but having this group to bounce thoughts off of is a blessing!

Welcome to the Family boatsforlife! I think you will find this is an amazing group that will support you in your journey. I came to the group when I was trying to decide whether or not to take Camzyos. It is because of the comments from the people here — factual and spiritual — that I decided to move forward.

My journey with Camzyos, in terms of results, has not been as life transformative as some of the others here. I have been taking it 111 days today; 3.5 months. I still experience shortness of breath upon exertion, but not as badly as before. Now, my heart rate is often high even when I am sleeping, which did not occur before I took the medicine. My cardologist insists that it’s not because of Camzyos. I still experience angina occasionally.

My cardologist is a divo. His word, I refer to his as a rockstar, because after years of being misdiagnosed he found the problem and prescribed Camzyos. But, I have had to battle with him a couple of times. He dropped me from 5mg to 2.5mg after the first month because he said the algorithm said he had to do so. But, because of information I learned here I knew that was not the case. He still dropped me; but, after reminding him that MY obstruction was negligible during rest but through the roof during exertion, he agreed to another stress echo rather than the limited ego that is done during the first 4 months on the drug. The result, he took me back to 5 mg. The morale of this story is that YOU have to be your best advocate, YOU are not an algorithm!

Also, make sure you know what you cannot take and can take with Camzyos; many things are counter indicated. Things you might not think of like grapefruit and some allergy meds.

Bottom line: This drug is not for everyone; people respond differently. So, be diligent, ask questions, listen to your body, have faith, and stay positive!

Great response @jaymaysea! Thank you for sharing that...it's not all sunshine and roses, and you and some others have had a rough road to travel on. Thanks for letting @boatsforlife know how important it is to be your own advocate too. And the drug interactions! That's important. I was like you...little gradient at rest, huge under stress/exertion. If you didn't push for yourself and let your doctor follow protocol, then who knows where you would be right now. People are unique and different, they are not algorithms like you so eloquently stated! I hope you get continued improvement. When is your next echo?

Thanks Debra. My next echo is October 30th. I am thinking of going to Mayo or Cleveland to get another assessment. We will see. Trying to stay positive.

You have such a great outlook @jaymaysea. I know this must be difficult for you not getting the response you hoped for. Naturally I am biased towards the Mayo Clinic, but Cleveland Clinic is top notch as well, and being seen by an Center of Excellence is like no other experience. If you can, I would encourage you to do just that! I have shared my story about being misdiagnosed for several years, and finally going to Cedar Sinai and Mayo for HCOM diagnosis. The Mayo did two things that made me choose them...they ordered a plain old chest xray, and they did a simple lab BNP. Cedars didn't do that, only a fancy echo. It showed my heart was failing. That scared me! So open heart surgery it was. Now I want to share with you another story to maybe help you decide about a COE visit. I have a friend in Washington. The State, not D.C. 🙂 She was diagnosed by her cardiologist with RIHD, Radiation Induced Heart Disease. She had breast cancer and had radiation to her left chest. Years ago. She was told she need surgery, and her valve was bad too. I encouraged her to get on Connect and learn as much as she could. She didn't, but that's ok. She told her doctor about Mayo and being a Center of Excellence and he had no idea what she even meant, and said Washington State was a top leader in whatever it was she had. So two months ago she underwent a TAVR. She was feeling better, but not really. He started doing more tests. He was confused and had no idea what she had, because it was not RIHD. She did not need the TAVR. More research on his part and she now is diagnosed with amyloidosis of the heart. I have given her the information to sign up with Connect and I think she is now. And she is also planning to come to Mayo for a second opinion. She had surgery for something she didn't need!! Her doctor was stumped but his ego kept from sending her to a COE. Just a little side note for you to think about. Your health is your greatest gift, and it's so important to do all you can. I would go with you to Mayo if I could!!

This is why I call it a Family. Thank you for taking the time to give me more insights.