Camzyos treatment location / expertise?

Hello @amyfaith
Welcome to Mayo Clinic Connect. I am so glad you found this site. There is no feeling like knowing other people out there have what you have and can share their stories.
I remember finding out what I had, and I was stunned. I could barely spell it...let alone knew anyone with it!
If I could share any advice with you, it would be to trust your instincts, and do not let distance or your backyard be the deciding factor for where you decide to get treatment from!!
Learning as much you can about what is living inside your chest is as important as who you get your care from.
I assume (bad idea!) that you know this is most likely genetic, there is no "cure" and each person has different and unique symptoms, but we all seem to share many in common.
Shortness of breath. Fatigue. Crazy heart pounding/racing. And more!
You only get one chance on the planet, and your life is important. You need to know 100% you are getting the best, top-of-the-world care.
It's good you are thinking about that.
A COE exceeds standards and has outcomes that put them in the top category.
Nobody ever wants to hear they have this condition...let alone be told they need open heart surgery. Camzyos works wonders for some and for others not so much.
It's totally your decision which path you chose with the help of your HOCM expert cardiologist.
Mayo Clinic Connect is here to listen and share stories and opinions...but we can't take the place of medical experts.
Patients helping patients. It's a beautiful thing!
What is your internal voice telling you?
Have you processed enough to feel confident in your choices?

Hi Debra, Thank you ! for your warmth and warm welcome.

I agree there's nothing like connecting with people who know what you're going through, and have insights on the path ahead.

I very much appreciate hearing what you have to say about a COE, and not just staying in my own back yard. And gettting the best care possible, thanks for advocating for that. I'm taking your advice to heart. 😉

I've been reading and learning as much as I can about O,HCM in the past few months, so have a start on understanding what HCM is. My main symptom is SOB on exertion, & an increase in long term murmur. My instinct is to gather up more info, and now that I've been told I'm a " good candidate" for Camzyos to think carefully about options. So that is my main question. Up to now, age 67, I've been mostly very healthy. That black box warning is certainly alarming. My local cardiologist who I know and trust, & who has an excellent local reputation had not suggested a COE. So, I'm exploring. And am also looking at the Lahey center in Burlington , MA.

Do you know if with Camzyos at a COE, do people always recieve the follow up echo's at their COE, or are those sometimes done remotely - closer to someones home if someone were traveling to a COE for their primary HCM treament? Or all echos, all follow up done in person at the COE's ?

I'd also like to understand more about what is the average path of progresion. Is HCM always progressive for individuals ? What is that expected arc of progression? and how does Camzyos change that ? If anyone has a resource to point me to on that, I'm interested.

Thank you !

Hi @amyfaith and welcome to the family. As you have already discovered, this place is a gold mine of support. (Debra's the best!!) I've posted here several times about my experience with Camzyos (life-changingly-positive with no side effects), but I'll try to speak to your COE question. I'm in Canada where I think we might have the equivalent of a COE but it's a 3-4 day drive or a 7 hour-each-way, $700 return flight. My options were limited. I fought for years looking for a diagnosis but fortunately, as soon as my local cardiologist saw textbook-oHCM all across my test results, he recommended Camzyos. I had nothing to lose by trying it (black box warning comments to follow). Had he NOT recommended it (and had I even known about it), I probably would have dug deeper and looked for second or third opinions. I also have every confidence that he would have helped me with options if Camzyos had not worked. Not everyone is so lucky with their medical care. If you are confident that you are getting good care, and your second opinion agrees with the first, and your specialist at University of Vermont supports that too, and all suggest a treatment plan you are comfortable with - sooner or later you will have to trust your gut. Learn everything you can, and don't be afraid to look farther afield (like a COE if you can access one) if you have doubts. There is a Camzyos web site that has excellent information that explains how the medication works.
About the black box warning, the way I looked at it is that oHCM is effectively (perhaps not strictly accurate, I'm no expert) a form of heart failure. If Camzyos MIGHT cause heart failure (which is not the same as a heart attack), I'm probably not much further behind. Also, while on Camzyos, I would be closely monitored for months/years, so changes or deterioration in my heart health would be detected much earlier.
All that said, I'm not a doctor and have no medical expertise, so do not take anything I said as medical advise. It's just my own experience with oHCM and Camzyos. Everyone will walk a different path. Surgery, ablation, medication,... stay positive - there are options. And keep in touch with the good folks here at the forum. We will all want to hear how you are doing and wish you a quick return to health!

hi boatsforlife,
Thank you for your warm welcome, and positivity ! Very wonderful that the Camzyos has worked so well for you. Wow, so glad you are feeling better. And,that's hopeful news for me.

Sounds like you've gotten wonderful care, and trust your team. I agree that's so important, and will be something I'm looking for wherever I end up. Someone I trust, who also has experience. I can see that with a bit more time things will shake out, and my choices will get clearer. So, yes, I think I've got some options ahead.

About the black box warning, I'm not where you said you were in term of pre C thoughts , but I think I'm likely to take the Camzyos since it's being recommended, and I think I'll need to do something ; so, both cross my fingers/ hope for the best, hope my underlaying health gets me through, and know I'll be monitored carefully. And, now I know of someone who had Camzyos be " life-changingly-positive with no side effects" ! So wonderful. The risk seems worth the potenital payoff.

Hearing about your experiences, and thoughts, and this connect group, are definitely a part of my stay positive attitude, so thank you for your kindness, and for your words of caring.

The doctor that puts you on camzyos will be where your followups and echos will take place!
I was diagnosed at phoenix 7 hour drive for me to mayo and put on camzyos to get me stronger for surgery!
I asked about follow ups and exhos in my home town and was told i needed to do them at mayo in phoenix
Best of luck on your decisions

Hi! Regarding where to get your follow up echos- your local cardiologist can do it after you’ve started Camzyos
I’ve been on Camzyos for two years. I no longer have an obstruction, but I still get out of breath at times. I also take Metoprolol and Isosorbide but I certainly am better off since starting Camzyos
Good luck
Deborah

Obviously different people have different experiences. As I said, I now get my echoes at my local cardiologist’s office
Deborah

Thanks for your message!

It's helpful to hear what you and others have done.

I was in touch with one treatment team, and they said a similar thing, re what you wrote. That where I get the camzyos from is where I'd need to go for at least the 4, 8, 12 week follow ups, and for the long term - as you mentioned for yourself.

Someone else I spoke to, in person, indicated that they thought that perhaps longer out follow ups might be able to done at a different location. But I'm guessing that depends entirely on the prescribing Doctor? ( and personal situation) ?

Good to know that camzyos can be used to get stronger for surgery. Great that you were able to use it that way. Hope you are very well now , and that surgery was a success for you.
All best wishes.

hi Deborah !
Thanks for that update of information, good to know that you've had your follow up with your local Cardiologist. So sometimes that is an option.

And great to hear you've been on it for 2 years and that it has helped clear the obstruction!

~ While I'll wish that some medication could make me symptom free, realistically also good to hear your situation, as maybe I need to remember that overall thing of we just can't know the path ahead. So camzyos may or may not work for me, and even it if does work, I also could be helped and still have SOB, and still need other medications.

It's all about we'll see.

All best wishes.

Faith - I am 78 years old and I was finally diagnosed correctly two years ago. But even with Camzyos and the other drugs I take I am not symptom free. I get out of breath easily if I walk too fast or if I walk uphill. I’ve realized I need to accept the way I am. But it’s certainly better than before
Hope the drug helps you