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Why Camzyos instead of surgery?
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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What a relief @joycehocm! I know that must have been a heavy thought burden thinking amyloidosis was the culprit! When you learn about that disease...it would feel so dark and scary to think this could what is going on. Thank goodness you don't have it!
I am so glad you came back to share with the group. I hope you keep coming back and share your progress.
Happy New Year!
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2 ReactionsI was on verapamil for many years after HCM diagnosis with no side effects (can't remember the dosage, maybe 25mg once daily). From the time when conditions made it essential for further intervention, I was prescribed a much higher dosage (200 mg twice a day? I don't remember). The result was a side effect that Metamucil and a high fiber diet barely helped.
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1 ReactionWhat happened after the med side effect? Did you go off verapamil and on to something else? Did you go onto Camzyos or have surgery. It is really just hitting me that this is going to be a journey. Do you know if all of us "progress" unless we have surgery? I know everyone is different and we don't know the future but information on "progression" is difficult to come by. Information on improved lifestyle other than moderate exercise and healthy eating, is also hard to come by. I already do both of those things and am getting better and better at the dietary changes - anything else you might suggest?
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1 ReactionHi Joycehocm, I had a septal myectomy at Mayo 7/2022 and went off verapamil (that was SO GREAT, no more constipation). After the myectomy, I am on Metoprolol 50mg. As you know, HCM is inherited and everyone is different. I was diagnosed about 15 years before surgery, doing OK, walking, biking, doing everything till I had a syncope 2/2022. That was the turning point for me and Camzyos never came up in the discussion. My daughter-in-law did research and my gradient was too high. I, too, followed - and still do - low salt, low carbs - the whole nine yards. This is different than cholesterol based, valve problems and other types of heart disease. While healthy diets and a non-couch potato lifestyle whenever possible will contribute to overall better health, the only way you could have avoided HCM is having parents without HCM or the gene(s) that were passed on to you. This is not the result of anything you did. If you have not already done so, read about hypertrophic cardiomyopathy (HCM) on the Mayo website. All of us are on the same journey - in different lanes. Keep asking questions when you have them!
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3 ReactionsDid you have open heart surgery?
I was diagnosed with HOCM 8 years ago at Mayo Clinic had a checkup there recently. The exercise test is always fun (ha ha). My BP goes down instead of up in the treadmill.
For treatment, my choice is mavacamten (Camzyos) or surgery for symptom management. Right now, my only limitation is on hills, when my body will just say “Stop” and have to let my heart catch up.
Hello @johnwx,
It looks like you are new to Connect, so welcome aboard!
I am not sure if you are asking me or @joycehocm about the open heart surgery.
I can say that yes, I did. I had a septal and papillary myectomy at the Mayo Clinic in Rochester four years ago. Camzyos was just coming around, and I was not a candidate for this treatment and instead went the way of open heart surgery.
Camzyos can be a miracle treatment for many and for some it is not. And for others like me, I had to chose to go forward with open heart surgery or live a life void of all the things I loved.
I have never looked back and am forever grateful that I chose open heart surgery at the Mayo.
The added bonus is I do not have to take medication for the rest of my life. That is something that was important to me. I do not like taking meds!
It sounds like you have good control of HOCM symptoms and are active. That's wonderful. Life with HOCM can be so weird. One day is good, another day we can barely tie our shoes without gasping for air! When I got to that point I knew I had to do something. There were days I felt like I was going to die!
I just had the VOX exercise stress test a couple of months ago at Mayo...you're right...it's SO FUN! I say that as a joke. It's far from fun but I passed with flying colors (although I thought I would pass out, not pass the test!)
You mention your choices are Camzyos or open heart surgery. Have you had a chance to look around here on Connect? There is so much information on both topics.
When do you see your doctor next?
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2 ReactionsHi - it must be karukgirl because I have not been on Camzyos or had open heart surgery - the docs are still figuring out a med protocol for me.
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1 ReactionThank you for your kind welcome. I will do more reading. Thank you.
I just saw my cardiologist this past week. Looking at all the options. He said that I have time to decide as my case is not emergent. It is a quality of life choice for me.
After years of telling my doctor about my exercise intolerance of having good days and bad days they kept telling me im getting older, it may be exercise induced asthma, and all the other things! I got admitted to hospital 2 years ago for breathing difficulty while out on walk, they ran all the test except stress test. At the time my resting gradient was 24 they diagnosed me with onset of mild cardiovascular disease and put me on carvedelol. I went back a few times and told cardeologist the medicine seems to make my work out worse! He kept menom it.
It wasnt until 3 months ago i had two back to back heart failures stress test 48 gradient resting and 122mmHg stressed!
They saw my blood pressure go down as well while on treadmill.
I decided to go to mayo and they said i had been misdiagnosed for years
Said surgery is best thing for me
They put me on camzyos while waiting for surgery date
After 3 weeks on camzyos
My resting gradient is 13mmHg and provoked is 31mmHg
I really dont want to me on medication and i dont like the heart palpitations i experience while on camzyos
I go back to mayo in 3 weeks for second ekg
Will see how much difference it has made
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4 ReactionsThat must’ve been so frustrating for you.