Anyone take new drug Camzyos (mavacamten) for HCM?

Jess: I am a 73 year old male with a long standing diagnosis of Obstructive HCM. Over time my HCM progressed and I experienced the expected symptoms and clinical data of progressive heart failure. I am otherwise in generally good health, but my heart condition required significant and frustrating adjustments to my activities of daily living.
GOOD NEWS! I began Camzyos in May 2022. After three daily 5mg doses all symptoms were gone. I thought it was psychosomatic! Now after 7 months all is still excellent and after a couple of months the dosage was reduced to 2.5mg daily. I have been under a very strict protocol of monitoring and testing (MD visits, echos, and EKG).
Camzyos does not work for everyone and might he dangerous for some. But it is worth a try under expert supervision and careful follow up.
Camzyos has been a life changer for me! I can only thank God, my cardiology specialist in HCM, and his team in Memphis, Tn. And, the increadible brains that invented this new drug!
Peace!

Hello @annd, and Merry Christmas too!
Welcome to Mayo Connect, I am so very glad you are here. Like @jaymaysea says, and I echo...fear is something that would be normal for anyone who hears they need to have open heart surgery. Everything we do has the potential to have a negative outcome...driving a car, walking down stairs, going to a crowded concert...but we get to decide what we will do and assume the consequences.
I admire your perspective. How you are willing to to consider open heart surgery. It is scary. I admit that. And I would have done anything to avoid it. I was too late for the Camzyos trial, the usual meds were not working for me, and I could have just said this is okay for me. To live a half of a life. I had lost so much I cared about and could no longer do.
But when I look back I realize I had God by my side and that gave me great peace. It didn't hurt that I was in the BEST hospital in the WORLD either! This is a surgery like none other and you need to be in the excellent, capable hands of superior surgeons.
When I think about where I was before surgery, I wonder how much worse I would be today had I not chosen to take a chance. It felt like a chance, but in reality, it is a straight forward procedure, nailed down to the minute deals and perfected beyond belief at Mayo.
I will be so glad to help you with any questions or thoughts you care to share. Mayo Connect is a wonderful forum to share with others just like you and me. I wish you a Merry Christmas, and before I press "reply" do you have a good cardiologist on your team? One who is up with HOCM?

Thank you for sharing this. I was recommended to have surgery 6 months ago and out of fear have not. I have been declining. This is a happy ending story that gives me courage some are glad to have done the surgery. I am hoping to be brave enough to do it.

Hi @andyherman3, thanks for asking.
100% yes the surgery worked for me. I take only a low dose aspirin each day and that is it. I was barely able to walk on flat ground, let alone a gentle incline or steep hill. I felt like I had lost any joy left in my life. I was so active physically, and now I couldn't bend over to tie my shoes without gasping for air and having tachycardia. My heart was starting to fail, and I was not able to join the Camzyos trial. I was offered disopyramide as a last ditch effort, after at least 4 beta blockers and calcium channel blockers did not work. I ended up at Mayo Clinic in Rochester, and had the prescription at home ready to try, but I wanted another opinion. Mayo said open heart surgery. Naturally, I was freaked out! It's a BIG surgery. And has risks! But every procedure has risks as do drugs...so knowing I was in the best hospital in the whole word, I put my faith in God and the Mayo. Looking back, it's been three years now, I just can't imagine not having had this done. I'm so much better. I'm able to hike again. Not like I used to, but I'm also three years older! I had the surgery when I was 62. I had middle back pain that was a bear to live with for a year, and other then that, I have a pretty scar to remind me how brave I was and how I overcame my tremendous fear to proceed with the surgery. You're the only one who can decide this...you know that, but I can say being in great shape before surgery was very helpful. I think if I had kept postponing it, and sitting on the fence, I would have further declined and my health would not have been so good. Make sense?

Hi @andyherman3, thanks for asking.
100% yes the surgery worked for me. I take only a low dose aspirin each day and that is it. I was barely able to walk on flat ground, let alone a gentle incline or steep hill. I felt like I had lost any joy left in my life. I was so active physically, and now I couldn't bend over to tie my shoes without gasping for air and having tachycardia. My heart was starting to fail, and I was not able to join the Camzyos trial. I was offered disopyramide as a last ditch effort, after at least 4 beta blockers and calcium channel blockers did not work. I ended up at Mayo Clinic in Rochester, and had the prescription at home ready to try, but I wanted another opinion. Mayo said open heart surgery. Naturally, I was freaked out! It's a BIG surgery. And has risks! But every procedure has risks as do drugs...so knowing I was in the best hospital in the whole word, I put my faith in God and the Mayo. Looking back, it's been three years now, I just can't imagine not having had this done. I'm so much better. I'm able to hike again. Not like I used to, but I'm also three years older! I had the surgery when I was 62. I had middle back pain that was a bear to live with for a year, and other then that, I have a pretty scar to remind me how brave I was and how I overcame my tremendous fear to proceed with the surgery. You're the only one who can decide this...you know that, but I can say being in great shape before surgery was very helpful. I think if I had kept postponing it, and sitting on the fence, I would have further declined and my health would not have been so good. Make sense?

Did the heart surgery improve/ remove your symptoms? How long ago was it and are the results long lasting? I was told this is the next step if Camzyos doesn’t work. Would love your feedback on this and if you felt the risk was worth the benefit? Thanks so much.

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?

Thanks for your reply !
I was diagnosed in July (by echo)...pretty quickly after reporting minor symptoms to my primary care Dr.
Met with the Lahey team in Sept ... GREAT team !!
Now here I am Nov 1 ! As far as diagnosis and getting a plan together, not bad. Of course, surgery was suggested as the other option, but I chose to give Camzyos a chance first !