Anyone take new drug Camzyos (mavacamten) for HCM?

Hello @susanml, and Welcome to Mayo Connect! Like @boatsforlife mentioned, this is a very supportive support group. The Camzyos people are super helpers. They share with each other the things they have learned about this new drug protocol and are happy to reach out to help you too. There are many in the Camzyos group from Canada, so you are in good company.
I am so sorry to hear you have gone down hill so quickly. That must be frightening and very concerning. And just finding out six months ago too! When do you begin Camzyos?

Well great news the muscle is shrinking and is not squishing the valve

Had my first thoracic scan since starting. My Dr was pleased that the left muscle has shrunk enough to no longer press on my mitral valve and the muscle has shrunk in 1 month

My meds come direct from the brystal meyerssquib manufacturer. I was told no pharmacy carries it

Welcome @susanml . The folks here are very supportive and it's a good place to see what others have been experiencing with HOCM with or without Camzyos. You won't get medical advise here of course. I hope you have results as good as mine have been so far!

Good day all. I’m waiting to start Camzyos after being diagnosed HCM 6 months ago. I’ve gone down hill quickly and other drugs have not helped. I’m anxiously waiting to get my life back. All the best Susan in Canada.

Hello again Camzyos family. An update at the 6 week mark. I feel ... GREAT! Noticed some possible positive effects after the first couple days then a bit of a wobble around days 10-12, and since that time it has been the most amazingly smooth sailing I could have hoped for. Sometimes I forget and start walking a little too briskly and feel some minor effects - just exactly what one might expect from being 15 years without any real kind of exercise. I have no idea what my numbers are from my pre-Camzyos echo and my 4 week echo, and I'm intentionally not finding out. I know how easily I can psych myself out trying to understand all the stuff in anything like an echo report - especially with my medical degree from the School of Google. My cardiologist has been asking how I am feeling, and is replying with positive comments and has not changed my dosage yet, so I am content to let him do his job at this point. Saw my family doctor last week and told her how great I am feeling. She said it was probably too early to see much in the numbers yet, and then it was fun watching her jaw hit the floor when she compared the 2 echos. So I'm just riding a high for now.

@lakehappy welcome to the “family.” Please feel free to ask the group any question. We are here to support you. We cannot give you medical advice; but we can give you the benefit of our individual experiences, which are varied. You will find that the drug is a miracle for some and not for others. Listen to your body and have faith. Ask the medical professionals questions, push back when you need to; remember you have to be your own advocate. You are not alone!

Hello @lakehappy, and a warm welcome to Mayo Connect! I was a stalker on here too when I first joined, so I am happy you feel comfortable enough to jump in! You have come to the right place to find information about Camzyos. There are some incredible members here that have shared their journey with all of us, and I hope as you begin Camzyos this coming Tuesday, you will feel free to ask them your questions. @kelliw and @jaymaysea are Camzyos champions and have shared their ups and downs honestly and openly with the group.
There is a strong genetic link, have you read this? It's very informative...
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
HOCM/HCM is so difficult to diagnose because the symptoms mimic so many other heart conditions. Starting on Camzyos I would expect you to be apprehensive, it's an experimental drug, but there has been a lot of success, and also some failures. I think you are very brave to try it! I had open heart surgery at Mayo Rochester, so I didn't get an opportunity to try Camzyos, but I can tell you the Camzyos group is a wealth of information. Have you had a chance to read some of the stories here in the Camzyos group?

Hello All, I've being following this group since July. I start the Camyzos this coming Tuesday. I was diagnosed with HOCM in 2016. Thought the shortness of breath was age related and fatigue also. This June had an episode with dehydration. That's when I was introduced to this therapy. My apprehension or fear is countered by my excitement.
How about the genetic component of this condition. Have any of you done any genetic testing? I have and my kids will be soon. So many unexplained breathing/heart conditions with my Mom and her siblings...