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DiscussionWhy Camzyos instead of surgery?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 20 6:47am | Replies (13)Comment receiving replies
Replies to "Hi again all - I had my first HOCM consult at Johns Hopkins on Friday. The..."
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.
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?