Anyone take new drug Camzyos (mavacamten) for HCM?

I started out on the flatlands, so I know where you’re coming from. A place all its own.
I do get labs once every six months maximum. If I feel “off” for an extended period of time, I’ll go in sooner. My diet consists of unprocessed, low-sodium, high protein foods mostly. I have cheat days on occasion, but I try to stay pretty strict. 2000mg of sodium or less per day is the goal.
My heart condition is super hereditary (it killed my father at 31 and my brother was at the Mayo Clinic getting a full transplant when my VT began and I was eventually diagnosed with cardiomyopathy) , so I don’t have much choice.
I’ve read quite a few stories on here, great place to associate with like-minded folks. Thanks for your time, it’s always appreciated.

Day 3
5mg at 0815 am
Weight 268.2lb
Breakfast was
10oz coffee
1/2 can Celsius (I spilled 1/2 of it)
500mg metformin
Today I feel great, no side effects have manifested, dinner will be grilled salmon, and some pasta

Note: I take oxycodone 10/325 for chronic severe back pain, at least 1x per day no side effects noted.
Also I drink a couple of 12oz frescas throughout the day..

Later in the week I’m gonna to head up to 13,000ft elevation to test the waters.. and take some pictures..I’ll update good or bad how it went.
See y’all tomorrow
Dave

Your dietary goals sound reasonable and sound @irishpeaks. I've read a lot lately about processed foods and their negative impact. Having a 'cheat day' makes life worth living! I've been having way to many 'cheat day's' lately. I need your discipline!
It must have been super stressful having lost your father at such a young age, seeing your brother go through the process of a heart transplant all while you began the same journey. That's a lot to process! Thank goodness you have found an association here on Mayo Connect that you can share with "like-minded folks." Knowing what you know now, and being able to make decisions for your better health is a good thing. You may not have much of a choice, as you say, about your diagnosis, but you do have a choice about your attitude. You have a really good attitude. It comes across in your posts.

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

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 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

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?

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?

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..

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! 🙂