Anyone take new drug Camzyos (mavacamten) for HCM?

Hello all, my name is McKenzie. I am 25 years old and live in the US. I just wanted to say thank you to everyone in these forums, they’ve really helped me try to keep a positive mind through out. I was diagnosed with obstructive hypertrophic cardiomyopathy 3 years ago, my doctor kind of dropped the ball and I wasn’t even on meds and didn’t realize the extent of my condition. Recently I was blindsided and told I need open heart surgery. I got the referral and go to my consultation to hear that there’s this new miracle treatment and maybe I can avoid having open heart surgery. Reading all your guys experiences is really giving me hope! I am terrified at the same time though. Praying I have good results and can live a normal life, I have young children that I want to watch grow up.
Thanks for letting me vent and introduce myself 😊

Look at you @kelliw ! Flying around the country, doing stuff like a 'normal' person! Yay! I know we have the same condition, but different pathways to living with it. I had open heart surgery. You are bravely trying a brand new drug, with what sounds like great success. Here's what I can tell you from my side: My feet still swell after a long car ride or sitting a long time. Nothing like before surgery, but still present off and on. Mostly gone in the morning too. I had the beginning of heart failure before surgery and the swelling was much more intense. I don't know if this helps you or not, but no matter what we do, either surgery to correct it permanently, or life long drug therapy to control it...it isn't going away. You know what I mean? We were born with it and there isn't a cure, only control of symptoms. So I am just assuming the ankle/feet swelling is part of having HCM. I don't know about you, but I'll take a bit of fat feet over gasping for air and chest pain/dizziness any day! But then again, because I'm no expert on anything, if your doctor who is monitoring you seems unconcerned, then maybe that's a good thing. Right? When is your next appointment? Have you kept some kind of notebook on your symptoms so you can share with you cardiologist next visit? Or jotted down on a calendar the days your feet swell and what you were doing? It might be useful information since this is all so new.

@mckenzie541, welcome to Mayo Connect. You have definitely come to the right place for more information from people who share your same condition. It is so scary at first, isn't it? I'm sorry, but certainly not surprised you fell through the cracks so to speak with your doctor and not getting the care or direction you needed. My story is so similar, but I'm waaaay older than you! This is a genetic condition that many people have and don't know it, until the obstructive symptoms come on. I remember sitting in the patient chair at St. Mary's hearing words coming out of Dr. Bagameri, the surgeons mouth, "you need surgery...open heart surgery." To say I was stunned is an understatement. I felt the blood drain from my brain and felt like I left the planet and had gone to a different universe. At that time, just over two years ago, Camzyos was not approved yet, only for clinical trials. There are now more people on this site taking this new drug with much success. No wonder you are encouraged by reading about it on here. I honestly believe, with all my hypertrophic heart, that no matter what you decide, open heart surgery or the new drug, you will come to a better decision after you educate yourself. Open heart surgery is scary. Not a lie. But it's also a permanent solution to the obstruction. No need for life long meds. It's something only you, your doctor and your family can decide. Poke around here...read as much as you can. Ask questions. People here are willing to share their story with you.
Having little ones has got to up your stress level to the 10th power! Since there is no cure, (yet!) there is only symptom management, surgery, or the new drug, Camzyos. For now anyway. Be sure that your cardiologist is up to speed on HOCM. It's not commonly seen in most practices, but it's something that the Mayo Clinic, and other Centers of Excellence (COE) excel at treating on a much larger scale. The top HCM doctor in the world is at the Mayo Clinic in Rochester. Dr. Steve Ommen. Again, I would encourage you to educate yourself as much as you can. Learn about all the different pathways you can take on this new journey. You are in the right place, at the right time and surrounded by others just like you. I would like to invite @colleenyoung to this conversation to share a couple of interesting posts and a really cool video about Hypertrophic Cardiomyopathy. When do you see your cardiologist again? Do you have a list of questions for him/her? What are you doing to handle your stress?

Thank you, Debra! Your encouragement made me smile! Yes, it is so good to be feeling normal again!! And I will definitely take some ankle swelling over gasping for air! So true! I have been writing in that journal book they sent in the welcome kit, but have not been keeping track of the swelling. I will start that! Great idea. So happy the dizziness is gone and am feeling great. Have a good day! 🙂

Hi McKenzie-I was really scared too. All of the warnings are very scary! Knowing that we are being closely watched, doing monthly echocardiograms and doctor follow-ups helped me take the plunge. I have been on Camzyos now for 35 days and cannot believe how great I feel! I had immediate relief. It feels like a miracle. This group has really helped me. I love reading the posts from everyone. I found another site HCMA that had helpful articles and videos when I was trying to decide if I was going to start Camzyos or not. Keep us posted... 🙂

@mckenzie541, I add my welcome along with @karukgirl. I'm happy to help you find people like you and relevant discussions as you explore your options.

As a 25-year old, Mckenzie, I would want to ask my cardiologist about long-term management of HCM and what would be best for you: surgery or life-long medication management. I would ask questions like:
- What are the pros and cons of surgery vs medication management for HCM?
- When, if ever, is the best time for surgery?
- Given my age, is it better to manage with medication and lifestyle or surgery while I'm young?
- What are the risks of sugery for me?
- What is known about the long-term use of Camzyos (mavacamten)?

Scanning the posts from HCM-ers taking Camzyos (mavacamten), like @manning2000 @hazmat1 @jess51 @captainterry @karen317 @alex09 @kelliw @smarfleet @klima12 @hansj @waqarsaeed @starbuck41 @darryl @irishpeaks, I see that the ages of members range from 45-75 years. Did your cardiologist discuss any of the above with you related to age and overall health status?

This is an older discussion, but I think you might appreciate the similarities that @barbararickard faced and the responses she got:
- Diagnosed with HOCM last year. May be time for surgery https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/

@mckenzie541, are you currently in the care of a cardiologist who has expertise in hypertrophic cardiomyopathy?

It’s day 6
Weight unc
5mg 0807 am
With 1/2 a Fresca and 10oz coffee. It’s crazy but I feel more energetic, definitely breathing better.. and I’m sleeping better..late last night I made a pizza run and me and Murphy (my dog) gorged ourselves on stuffed crust pepperoni pizza… not a normal thing but I’m 60… and I deserved it lol …which before when ever I ate like this (a full meal) my condition really flared..lunch/dinner will be leftovers.,
500mg metformin is also daily taken with meal

So far no problems
I’ll see y’all tomorrow
Dave

Hello Dave, I’ve been reading I can’t have Fresca with camzyos because of the bad interactions with grapefruit. Has anyone talked to you about the potential effects? I got a whole list of things that contain grapefruit and told I cannot have them at all 🥲
Im excited to see how the medicine works for you. I’m hoping to have good effects too. I’m the same way if I eat much my condition comes out really bad, I’m glad you’re feeling better already!

Hello! Thank you for your response and insight. I have been looking into all options and doing a lot of research, I’m prepared for either option. My cardiologist wants me to try the medicine first, and said if I have bad effects or if I just decide it’s too much of a hassle with my age we can do surgery instead. So I think I’m going to try that route, but I’m still having them get me prepared for surgery as it’ll take around 4 months they said. So I figured in the meantime I could try the medication out at least.
Surgery is terrifying, but I do like the peace of mind of having it done and taken care of and it feeling permanent. So I’m definitely not casting out the option either!
My new cardiologist specializes in HOCM, I am currently being seen at OHSU but my previous didn’t and was local to me and I think that was a big reason I wasn’t getting the care I needed. I do wish I could be seen at the Mayo Clinic but my resources are limited.
I will see my cardiologist in one month for a check up and then 3 months for a full visit again! I do have some questions but always ask people what I should be asking because in the moment I space it all haha,
Right now I try to do “normal” activities with my kids like camping, park, beach etc without overdoing myself and that helps take my stress away, otherwise now joining these forums is a step for me and I may see a psychologist if it gets bad. I hope with treatment it’ll get better.
Thank you for all your guys responses and helpful comments!
I’m glad you got treatment even if it wasn’t the medication, it seems the surgery is very successful and a great option! I hope you are doing well now.

That is amazing!! Hearing stories like this is very inspiring and makes me excited. I hope I have the same effects, I’d love to feel better and have more capacity to do things. I’m so happy camzyos is working well for you and giving you your life back. Reading all these is helping me fear and giving me the motivation to try it 🙂 it seems I’ll start with the free trial next week. I get the medicine tomorrow but have to wait for my first echo to be scheduled before I can start it. It’s good they’re monitoring people so closely, that gives me some comfort also