1. < Hypertrophic Cardiomyopathy (HCM)
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Why Camzyos instead of surgery?

Posted by joycehocm @joycehocm, Nov 12, 2024

I am just curious - once HOCM is diagnosed, why is Camzyos recommended instead of other treatments - like myectomy? (is that what once treated this? or ablation?). I am a complete novice here with a recent diagnosis - and mainly intermittent breathlessness. I have my first appointment at a COE on Friday. My local cardiologist said that I am a candidate for Camzyos and given the expense, I am curious about this. Also, can anyone tell me how they handle the expense? After help from a person's supplemental plan (if any) and from Bristol Myers, if approved, what do people end up paying for Camzyos?

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Debra, Volunteer Mentor | @karukgirl | Sep 4 10:04am
In reply to @brumasterj "@jules21 thanks and no at the time I was 57 years old and they and my..." + (show)
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@jules21 thanks and no at the time I was 57 years old and they and my insurance made camzyos very affordable $10.00 per month.
Camzyos helped in getting me stronger but it had its limitations, i ended up having septal myectomy in June of 2025, the doctors say the heart is good with no obstruction now but i have had issues with my sternum not fusing, they performed a sternal wire removal and added plates in dec 2025 and the sternum still has not fully fused so another surgery to reconstruct the sternum is being done sep 16 2026

My heart condition feels so much better i no longer get light headed standing up or walking stairs or hills! Im just dealing with chronic pain from the sternum not healing!

Its bearable it just prevents me from doing things i like to do riding my bike, picking up my grand kids, lifting weights,

Have not been back to work in over a year because it prevents me from doing my physical duties of my job! Thats the negative side!
The positive side is i get to spend more time at home with my wife and grand kids
So i’m ok with the trade off:)

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@brumasterj, well that just stinks!
You have always been the Poster Child for the HOCM and Camzyos to Septal Myectomy story.
I am sad to hear you have to undergo a reconstructive surgery on your sternum.
Sept 16 is almost here.
Thank goodness you have good support and a terrific attitude to carry you through the ups and downs of the Life Rollercoaster!

Are you going to the Mayo?
Do they know why this may have happened that your sternum did not heal?

REPLY
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judpuds | @judpuds | Sep 7 10:32am

I live in BC, Canada. I started Camzyos three weeks ago. I don’t have to pay anything at all. If you are low income, it will be covered. Your cardiologist is the one who applies for you.
So far, it makes me so tired. I cannot believe it . Just no energy at all. Sometimes I get a headache after dinner, but it does not last long. I get a very dry mouth and my doctor said I should now be drinking 4 L / quarts of water per day. Thats alot ! The benefits so far is that I don’t get as breathless, walking an incline or stairs or on exertion and no chest pain.. but I’m not sure being this tired all the time is worth it. My first echocardiogram will be end of next week. I have to have one every four weeks for the first three months.
I am 84. So far there has been no discussion at all about any kind of surgery( ablation or myectomy).

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Linda, Volunteer Mentor | @walkinggirl | Sep 8 2:52pm

@judpuds It may take time for your body to adjust. We are walking chemical labs; Camzyos is a new addition here. I have no experience with Camzyos, but many have shared their experiences. The Mayo Clinic has this https://www.mayoclinic.org/drugs-supplements/mavacamten-oral-route/description/drg-20534017. You may wish to type in your browser Mayo Connect Camzyos Side Effects, you'll find many links to discussions on this topic.

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boatsforlife | @boatsforlife | Sep 10 4:25pm
In reply to @judpuds "I live in BC, Canada. I started Camzyos three weeks ago. I don’t have to pay..." + (show)
Profile picture for judpuds @judpuds

I live in BC, Canada. I started Camzyos three weeks ago. I don’t have to pay anything at all. If you are low income, it will be covered. Your cardiologist is the one who applies for you.
So far, it makes me so tired. I cannot believe it . Just no energy at all. Sometimes I get a headache after dinner, but it does not last long. I get a very dry mouth and my doctor said I should now be drinking 4 L / quarts of water per day. Thats alot ! The benefits so far is that I don’t get as breathless, walking an incline or stairs or on exertion and no chest pain.. but I’m not sure being this tired all the time is worth it. My first echocardiogram will be end of next week. I have to have one every four weeks for the first three months.
I am 84. So far there has been no discussion at all about any kind of surgery( ablation or myectomy).

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@judpuds - A fellow Canadian here. If you have not already done so, it may be worthwhile asking your cardiologist (or other medical expert) whether there are any possible interactions with other medications you might be taking. In my case, I was put on a beta blocker which made me too tired to function, and when I got switched to a calcium channel blocker that problem went away. That was way before I started Camzyos so it's a bit different from what you describe, but it may be possible that you are experiencing a conflict that might be resolvable with a change of some other med? If Camzyos is doing good things for you, it's worth keeping as long as it doesn't cause other problems. Good luck with it - keep us posted.

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