1. < Hypertrophic Cardiomyopathy (HCM)

Why Camzyos instead of surgery?

Posted by joycehocm @joycehocm, Nov 12 5:24pm

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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Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 19 12:33pm
In reply to @joycehocm "Hi again all - I had my first HOCM consult at Johns Hopkins on Friday. The..." + (show)
@joycehocm

Hi again all - I had my first HOCM consult at Johns Hopkins on Friday. The very excellent doc said that the papillary muscle was the more enlarged part of the septum - anyone here had that particular comment? Also, he said it was important to rule out any amyloidosis of the heart before treating the HOCM. Amyloidosis is protein deposits in your heart or other organs with different origins than HOCM and has to be treated first. It is my understanding that it is a very dangerous cancer related to multiple myeloma. It sounded like being able to eliminate potential amyloidosis of the heart was a normal procedure before considering what treatment of HOCM is next (Camzyos? Septal Ablation? etc.). Those of you who are on Camzyos - do you remember if you had this part of the protocol first? It is scary to wonder about this while I wait to have the tests etc. etc. etc. Thanks!

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Hi @joycehocm, Thanks for updating the group about your visit! Have you had a chance to read some of the posts here on Connect regarding Cardiac Amyloidosis? There a many posts, and this is from awhile ago but very informative:
https://connect.mayoclinic.org/discussion/amyloidosis-2/
Here's one from John Hopkins (where you just were!):
https://www.hopkinsmedicine.org/health/conditions-and-diseases/cardiac-amyloidosis
And another from Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
You are well on your way to getting the right treatment, but it still must be a bit overwhelming having to go through all this testing. It's in your best interests to rule out anything else it could be, so trust in the process would be my advice!
When is your next appointment to rule out amyloidosis?
Do you see your cardiologist after the testing is done?

REPLY
baystater101 | @baystater101 | Nov 20 4:17am
In reply to @joycehocm "Hi again all - I had my first HOCM consult at Johns Hopkins on Friday. The..." + (show)
@joycehocm

Hi again all - I had my first HOCM consult at Johns Hopkins on Friday. The very excellent doc said that the papillary muscle was the more enlarged part of the septum - anyone here had that particular comment? Also, he said it was important to rule out any amyloidosis of the heart before treating the HOCM. Amyloidosis is protein deposits in your heart or other organs with different origins than HOCM and has to be treated first. It is my understanding that it is a very dangerous cancer related to multiple myeloma. It sounded like being able to eliminate potential amyloidosis of the heart was a normal procedure before considering what treatment of HOCM is next (Camzyos? Septal Ablation? etc.). Those of you who are on Camzyos - do you remember if you had this part of the protocol first? It is scary to wonder about this while I wait to have the tests etc. etc. etc. Thanks!

Jump to this post

Yes, Joyce, I had testing over the summer for amyloidosis before I started on mavacamten (Camzyos) in October, and tested negative. It is one of a few conditions that can mimic the signs of HCM. The fact that you're being tested for it is a sign you're in good hands. Amyloidosis is no doubt serious, but I've not heard it described as a cancer.

And yes, it is scary to wonder about all these potential diagnoses and complications -- as we newly diagnosed and/or newly symptomatic folks climb the learning curve of new terminology, new testing and diagnostic protocols, new treatment options -- in short, as we learn to adapt and adjust to living our new normal.

One way I am learning to live with the fear of the unknown (no, I can't just will it away) is to self-educate, as you are doing. Keep asking questions, of health care providers, of peers (thank you Mayo Clinic for this site), of so many online sources -- especially including as I mentioned earlier in this thread, the HCMA -- so you can make fully informed decisions moving forward.

REPLY
joycehocm | @joycehocm | Nov 20 6:47am

Thank you - I so appreciate your answer and all the other folks conversations here - you are helping me deal with this early stage of diagnosis / treatment!

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