Anyone take new drug Camzyos (mavacamten) for HCM?

You have a lot to consider @mckenzie541! Colleen laid out some great questions for you to write down and take with you. I'm happy to hear that your new cardiologist is specialized in HOCM. That is so very important.
If you don't mind, I would add another question to your list, in addition to what Colleen already listed. I would ask if he/she would recommend genetic testing for your kids, siblings and other first degree relatives. From what I have learned, if you have HCM you have a 50/50% chance of passing it down to your children. That also means one of your parents passed it to you and potentially other siblings if you have them. Those are big percentages! The sooner you know, like you at such a young age, the better off you are. This way you will be aware of the big scary stuff, as they say knowledge is power.
Your plan so far sounds very reasonable. It's probably something that can give you time to think about things and decide later if it is something you want to do long term. I see you mentioned that you wish you could visit the Mayo Clinic in Rochester. If the plan you have chosen, Camzyos, doesn't pan out and surgery eventually becomes the option, I would encourage you once again to be sure whomever you are sent to for surgery is from a Center of Excellence (COE). This surgery is so precise, only the best of the best should be performing it. There are a handful of places in the Country that specialize in septal myectomy. You know now that Mayo Clinic is a COE, and they have amazing people working there in the patient service/ business office/insurance that can check to see if your insurance will cover the visit. I was shocked and thrilled at the same time when I found out that because Mayo was a COE, my insurance (BC/BS of Texas) approved me to be seen there. Same thing with Cedars-Saini in Beverly Hills, CA. I went to both places for opinions after being misdiagnosed for several years and once again, my local cardiologist diagnosed me with Sub aortic membrane not HCM. I chose the Mayo, even though it was a bit more difficult to travel to, because when I first met the HCM doctor (Dr. Evans) he did two things not one doctor had ever done. He ordered a chest x-ray and a pro BNP lab. Two simple routine tests that had never been done. The x-ray showed my heart was enlarged and the BNP showed I was developing heart failure. That was the moment I knew I was in the right place. I thanked God for that, even though it meant open heart surgery. Your life is worth a plane ticket to Rochester if it comes down it it!
It sounds like you have some good coping skills, and little ones to distract you from over thinking. Trust me...I know I was a huge over-thinker when I found out. I was afraid I was going to die! I know now I made the right choice once I got the right information. It just took a long time to get that information! Feel free to keep coming back for virtual support, virtual hand-holding, virtual venting! You are in the right place now. I hope you will keep the HCM group posted on your progress.

Yes you are absolutely correct..that’s why I drink the peach flavored.. but I have had a couple original Fresca.. but I didn’t think it had enough juice to matter.? …. I should have been more specific;)

Thank you Colleen!
I appreciate all your helpful questions! When I met with my cardiologist last week I asked very similar questions, he wants me to try the medicine first but said if with my age it’s too much on me taking medicine and doing the echos and I don’t want to do it the rest of my life I can opt in to surgery still. He says the pros and cons are very similar, so it’s whatever I prefer. Surgery is going to be safer at my age then if I wait and need it at 70, but still even later in life it seems to be pretty safe despite being open heart surgery. It’s all scary and I feel kind of at a loss, but I figured I’d try the medicine and then after giving it a proper go I’ll decide what I prefer long term.
That’s the hard thing with such a new medicine, they don’t have long term studies available so they weren’t able to answer that for me
Yes they have, I was originally going to be seen in the pediatric dorm because most people are usually children or older that know they have it, so I feel like the odd one out with it. But it seems to supposedly be promising to have treatment done at my age so hopefully that holds true
Thank you! I will look over those discussions as well.
My doctor is specialized now with it, I’m being seen at OHSU on the HOCM floor I just transferred! Before my cardiologist knew almost nothing haha.
Thank you for the time you’ve spent on here!

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

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.

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!

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

@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?

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... 🙂

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! 🙂