How to decide whether to take Camzyos or have surgery?

Hello @doctorboo1, and welcome to Mayo Clinic Connect.
First of all, I'm sorry to here you were only recently diagnosed with HOCM.
Having made it to 79 and just now finding out must have been rather surprising. Especially since you are dedicated to so many physical fitness activities. It's impressive!

I found out I had HOCM when I was 62, and things finally made sense to me looking back. I was a runner/hiker/walker/dancer/biker and I lost the ability to do all those things and became very sad about it.
So I get where you're coming from. It happened so quickly in my opinion and no way was I ready to live like I was. I had no quality of life. It was pathetic! I'd get short of breath and tachycardia just tying my shoes or hanging out laundry. What a bunch of phooey!

Open heart septal myectomy was the chosen option, as the drugs were still in clinical trial when I was diagnosed.

Nobody here on Connect can answer the question of Camzyos, or the newer drug Aficamten vs septal myectomy.
That is totally something between you and your physician to make. We can only share our stories.
There are protocols in place for when a septal myectomy is performed. It depends on the size of your obstruction combined with a host of other diagnostic tests and screenings and your overall physical health, age, symptoms, etc. This is when a Center of Excellence comes into play.

Have you had an opportunity to learn as much as you possibly can about this life-changing condition?
Here is a handy link to HCM information:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And while you're at it read up on this, here's another handy site that has a link to Center's of Excellence by state that you may find interesting:
https://www.4hcm.org/
May I ask if you have had a second opinion?
Or have you sought out another opinion from a Center of Excellence, such as the Mayo Clinic or Cleveland Clinic?

I can attest to the Mayo Clinic/Rochester.
They are the world's leading experts in the diagnosis and treatment of hypertrophic cardiomyopathy. I have never regretted flying across the country to go there.
That would be my advise to you. Do not hesitate to seek a second opinion and do not let distance be your decision making factor. This is your only life! And you deserve to live it, how ever long you may have (which none of us knows!) with as much gusto as you have thus far!

Hi Debra, thank you for your reply and reflections, and congratulations on your management of your HOCM! Have you been able to resume most of your activities?
I too hate to give up my activities to this condition. I admit I'm impatient but have a pending appointment at UTSW in June. My cardiologist is a drug guy so hoping to get the other side at UT.
Im reading everything i can get my hands on, but not much on the long term issues, like does the surgery stop the enlargement from reforming, and what are the long term issues with camzyos,etc. Im sure little is known about the latter because they are so new.
In hindsight, do you regret the surgery? I lean that way because of the years of experience Mayos and others have. I am about to try Camzyos but not ruling out the surgery. I'd rather do it while im still strong and healthy.
Thank you for thoughts. If you have other insights, I'd love to hear from you.

Debra, I have a question? At this point do you have any regrets about having had the surgery? Have you been able to resume most of your physical activities without significant problems?

You could always try the medication for a bit and see how it does, though I understand that you would like to have surgery while you are younger and relatively healthy otherwise.

Young is relative! Lol
79 isn't getting any younger, but am heading up that path anyway. Will be starting Camzyos next week to buy time for additional review and decisions. Thanks for your thoughts.

@doctorboo1 Welcome to Connect! Debra has written a very helpful post with links to many other informational items to read. Have you noticed symptoms before you were 79? To share my experience, I will NEVER regret a septal myectomy in 2022 at age almost 76. Breathing had suddenly became difficult with activity. I was a very active person, walk, gym, bike, paddle, garden etc. and suddenly could not do those things without a struggle. Within a couple of months after surgery I resumed them again, slowly at first, and lo and behold, easy breathing. Last week was a 70,000+ step week. You are weighing your options and thoughts, a retired army nurse friend pointed out exactly what you noted: surgery while you are healthy enough if that is recommended to you. Camzyos: you have probably read as I did that it's a miracle drug, it does nothing, it helps for a time and then does not. My doctor said that too, when I asked him what he thought. It was still in testing when my symptoms worsened and my doctor did not recommend it. I was not a good candidate for it. Debra suggested contacting 4hcm.org, they will do an intake and help you with logistics. There are Zoom informational discussions, I am a Face of HCM on that website, look for Linda M in a picture with red hair on a boat. Where do you receive your care?

@walkinggirl Hi Linda, thanks so much for sharing your experience! I've been reading everything i can get my hands on since my diagnosis. Including overseas studies.
My cardiologist is with Presbyterian Hospital but have an appointment at UTSW June 1.
My doc is clearly a drug guy but UT is a top surgery hospital so my plan is for the 2nd opinion. I have an affection for Mayo's since I grew up in the Midwest and have a relative who works there.
I have not heard the data that Camzyos effects wane but noted few long term studies at all. Im glad to hear you are happy with the surgery. No one has been able to tell me if the enlarged ventricle wall can grow back or whether the fix is permanent. But, it sure seems to be the best option if you want to get back to doing the stuff you used to do.
This hit me hard because I was so active, and so are my brothers in their 80's. Mom lived to 98, several in her family were over 100 and still sharp. Women on my dad's side made it into their 90's too. I'm spoiled! I expected a much longer active life and refuse to back off.
Thanks again for sharing. Im not quitting even if I buy some time by taking the drug initially.
I'll look fir your face on the web page!
You asked if I had symptoms before. Last fall I was dealing with fatigue but no chest discomfort or shortness of breath. I thought the fatigue was lack of fitness due to slacking off on exercise. The SOB, etc started last month.
Even now, if I get out and walk, I feel better. Fewer symptoms when I exercise. Go figure? Lol

I was diagnosed with HOCM at 50 but I was able to function fairly well with moderate activity taking verapamil (and Norpace until it had to be discontinued). I didn't tolerate beta blockers as I already had low BP. In 2005, I got a second opinion at Mayo Rochester and was told I would likely need the septal myectomy eventually. My shortness of breath and fatigue worsened as my septum continued to thicken until I started passing out, needing a defibrillator/pacemaker. I went on Camzyos 2 years ago, it was an up and down experience over several months due to my responding 'too well' and cardiac output dropping below protocol even on 2.5mg. One year ago (at 74) I felt so lousy I made my appointment online with Mayo again, (I live in rural CO) and had the septal myectomy last April. For me, retrospectively, I wish I had done it much earlier. The recovery time was really about 6 months, but with cardiac rehab and just walking I can say it was worth getting my energy and function back! I still take the verapamil but nothing else now, so woohoo. As has been stated on this blog, everyone is different (esp with drugs) but I have no regrets having the surgery and had great confidence in the expertise of the Mayo Clinic surgical team and post op caregivers. They were informative every step of the way and supportive with all my questions before and after the procedure. I encourage you to ask as many questions as you need to, in order to feel confident in the direction and choices you make. This blog was extremely helpful for me as well.

@doctorboo1 , I have exactly ZERO regrets about having open heart surgery!
The thing is...we are all different and each one of us will present with many of the same symptoms, but then we react differently to meds or surgery.
I was on at least 5 or 6 different beta blockers and calcium channel blockers, none worked. Camzyos wasn't an option because of the clinical trials.
But my HOCM was also very severe by the time I was diagnosed. I was misdiagnosed for several years with a variety of other heart conditions. Didn't have 'em!

The decision for open heart surgery should not be taken lightly. For sure it is a major surgery and anyone with any sense at all would be afraid.
It comes down to what you and your physician decide is in your best interest.
Having said that, however, you know you better than anyone, so always keep learning, always keep advocating, and always try and have an open mind about this.

HOCM is such a weird condition. There are days you are fine. Then days you can barely breathe or stay awake. I am impressed by your attitude and your physical fitness. That is your secret weapon in this newly diagnosed, unwanted visitor to your heart.
I was told by Dr Ommen at the Mayo Clinic, that is was very unlikely the obstruction would re-grow after surgery. After all, it took 62 for it to become severe, so most likely it would not cause issues like it did.

I still have HCM. We all will forever. So yes, there are some left-over symptoms that I live with. But being able to power-walk up a steep hill on my daily 5-mile walk is a blessing I will never regret having the ability to do!
Did I answer your question, or just ramble??

@karukgirl Thank you so much for your response. I made it clear to my cardiologist that quality of life is critical to me. I didn't want to just treat symptoms, but rather address the condition itself. He was optimistic that the drug would do that but I'm not convinced.
All I've heard on mayo's and the HOCM websites are good about the surgery. Your info too. Im not afraid of surgery.