Anyone take new drug Camzyos (mavacamten) for HCM?

@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?

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.

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 😊

Good afternoon! I got back yesterday from my niece's graduation from TCU, in Fort Worth, Texas. I am beyond thrilled that I was fine on the airplanes, I was able to walk to breakfast, walk around the city for about 1.5 miles, and now problem parking in a neighborhood and walking to the graduation venue! Yippeee!!! No shortness of breath, gasping for air etc.! The dizziness is totally gone. The only thing that is happening is swelling of my ankles and feet. I showed my doctor at our follow-up to the Echocardiogram and he wasn't concerned. I don't have any other side effects. They only swell if I am sitting for long periods of time, and from flying. When I put them up and wake up in the morning, they are totally normal. Is anyone else experiencing this? I feel so good though! 🙂

It seems strange that I have been suffering for so long with hcm that now when I’m being active outside (mildly active) that without the huffing and puffing, it doesn’t feel normal? I feel ..I feel … good for the first time in a very long time, I’m up every morning, back on a regular schedule.. I think it’s working..

Five days, no side effects? That's great @starbuck41. Hopefully you will skate through this with nothing but good results. Glad to hear you are having some lab work done in a few weeks. With this being a new drug, I'm certain they will want to follow you closely. What did you think when you noticed you weren't as short of breath and the angina was gone? Did it seem unreal?

So true about sleep @irishpeaks! It is elusive and rare to have a sound nights sleep anymore. And waking up tired is no way to start the day. Full of good intentions, but lacking the endurance as you say...but that's the way it is. Every day is a new day. A healthy balanced diet, exercise and sleep sounds like a prescription for life for everyone! Too bad so many us (looking at myself right now) don't subscribe to the plan. Mostly it's the eating. Exercise is easier now after open heart surgery.
How amazing that your case study is being used to help others. It is a positive by-product of your misfortune. Are you aware of any other family members with your heart disease? Was the testing done at the Mayo? Does medication help?

Day 5
5mg 0800
Weight 266..
1/2 a Fresca and 20z of coffee for breakfast..
I’ve lost 3lbs in 5 days yay for me! I’m not on any diet, I guess I’m getting more active?Side effect? I’m drinking couple frescas daily..no diets in this house..also taking 500mg metformin, I was prediabetic I’ll take a blood test in a couple weeks and post my numbers, grilled salmon and pasta tonight for dinner, probably some kinda smoothie mid day.. not a healthy one but definitely with protein lol..
Still not adverse effects noted, but it’s only been 5 days, I’m not sure when they show up if you’re gonna have them, but for me so far so good

Y’all have a awesome day
See y’all tomorrow

I appreciate the kind words. Besides a good diet, I really try to stress my sleep/downtime. I still have my strength, but my endurance took a hit when I was diagnosed. I try to get a minimum of 8 hrs of sleep, but as you probably know as well, sometimes things aren’t quite right and sleep is a rare commodity.
My brother’s diagnosis as well as mine has led to quite a bit of genetic testing which helped find the mutant gene. They now use this knowledge to help detect/diagnose this disease in other patients. The fact that I know my misfortune can help others, brings some needed positivity into the mix.
If you have any questions, feel free to ask, I will share all the info I can about my situation if it will help/educate others. That’s why I got on this site, as well as hopefully learning some valuable information myself.

Day 4
5mg at 0811am
Weight 267
Was kinda sleepy so I went back to bed for a couple hours.
No breakfast, and I feel extremely normal, no angina, so shortness of breath, a brisk walk to the store from the end of the parking lot would usually have me panting but barely any.
Had 20oz of coffee and 500mg metformin at 1500pm
All is well..
See y’all tomorrow
Oh dinner is gonna be some kinda pasta dish

See y’all tomorrow
Dave