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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 7 hours ago | Replies (875)Comment receiving replies
@memphis901
Hi, I am a 75 year old female who lives in Mississippi, not too far from Memphis. Why do you say that HCM is not genetic when every source I can find says that it is. I am zeroing in on my mother's maternal grandparents as being the side of my family that passed the gene on. They both died fairly young in age. One of their sons had 3 sons who each died at a relatively young age of some kind of heart problem, and their father had heart issues, as well. Most of my other ancestors all lived very long and productive lives. I am also curious as to why you think HCM is not treated in Memphis? My own cardiologist is with the Stern Clinic in Oxford, and they are working to get me approved for Camzyos.
Replies to "@memphis901 Hi, I am a 75 year old female who lives in Mississippi, not too far..."
@peggykmitchell you may or may not carry the gene related to HCM. I have a gene mutation but not the pathogenic gene associated with Hcm but still have Hcm. The gene test determines who else maybe needs screening like parents, siblings or children.
One tool in the box.
@peggykmitchell — I have HCM but I don’t have any of the genes. I have been gene-tested three separate times.
On the other hand, my two grandsons have been tested and found to have the genes. Both are non-symptomatic so far.
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@peggykmitchell, welcome to Mayo Clinic Connect.
I'm glad you found the HCM group and it sounds like you will be starting Camzyos soon.
On Connect, we share our stories with each other with the intention to help each other learn from what we may or may not know.
We may think we know something, and then after being educated by our physicians or even learning here on Connect, we are better prepared to face what comes next with this condition.
Sometimes, new members, just beginning their own HCM or HOCM journey may not have all the information they need at the moment they post here...so it is good that others out there can give them additional information that may help them get going in the right direction.
That being said, it sounds like you have a strong family history of undiagnosed heart problems which very well may be HCM. Without knowing for sure what your relatives died from at early ages, it seems logical to assume it was HCM, but really, it is a mystery.
But now you can help solve the mystery in your family as the first one up with a confirmed diagnosis of HCM.
I'd say that is a good thing, but it's not something you wanted or asked for I bet. The good news is you can help your family by unraveling the pieces of the puzzle that are missing.
It is good that you have found a cardiologist who is up-to-date on HCM/HOCM. You will need that going forward. And also learning as much as you can about what is going on inside your heart will help you be your own best advocate.
Have you had a chance to read some of the numerous posts here on Connect about Camzyos or HCM?
Here is a link to a Mayo Clinic article about hypertrophic cardiomyopathy:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And here is another link to another organization you may find interesting:
https://www.4hcm.org
They have a section you can learn if you have a Center of Excellence in your state or near by state.
COE, or Center of Excellence, such as the Mayo Clinic or Cleveland Clinic (and others) are leaders in the study and treatment of HCM. They have excellent outcomes and are specialized in treating this condition. It is good to know if you are being treated by a physician trained in all things HCM.
When do you see your cardiologist again? Do you have your list of questions to ask ready?