Why Camzyos instead of surgery?

Hi again all - I had my first HOCM consult at Johns Hopkins on Friday. The very excellent doc said that the papillary muscle was the more enlarged part of the septum - anyone here had that particular comment? Also, he said it was important to rule out any amyloidosis of the heart before treating the HOCM. Amyloidosis is protein deposits in your heart or other organs with different origins than HOCM and has to be treated first. It is my understanding that it is a very dangerous cancer related to multiple myeloma. It sounded like being able to eliminate potential amyloidosis of the heart was a normal procedure before considering what treatment of HOCM is next (Camzyos? Septal Ablation? etc.). Those of you who are on Camzyos - do you remember if you had this part of the protocol first? It is scary to wonder about this while I wait to have the tests etc. etc. etc. Thanks!

Hi again all - I had my first HOCM consult at Johns Hopkins on Friday. The very excellent doc said that the papillary muscle was the more enlarged part of the septum - anyone here had that particular comment? Also, he said it was important to rule out any amyloidosis of the heart before treating the HOCM. Amyloidosis is protein deposits in your heart or other organs with different origins than HOCM and has to be treated first. It is my understanding that it is a very dangerous cancer related to multiple myeloma. It sounded like being able to eliminate potential amyloidosis of the heart was a normal procedure before considering what treatment of HOCM is next (Camzyos? Septal Ablation? etc.). Those of you who are on Camzyos - do you remember if you had this part of the protocol first? It is scary to wonder about this while I wait to have the tests etc. etc. etc. Thanks!

Hi @joycehocm . I can't speak to why a cardiologist would recommend either medication or surgery - that's way beyond my expertise but your cardiologist and COE specialist can answer that. My own personal view on it is that in one case I take a medication (an expensive one, for the rest of my life, admittedly). In the other case, someone either chemically burns away part of my heart muscle, or they break open my chest and slice out pieces of the heart. (I'm being over dramatic, I admit.) I had abdominal surgery (not heart surgery) and it was into a the second year after that I finally quit experiencing physical pain and emotional distress. I have no desire to repeat that, and the whole idea of someone slicing away pieces of my heart gives me the screaming heebie-jeebies. Yes, I'd do it if there were no other option, but I'd want to try other options first. You might rightly ask why I would chose to toss chemicals into my body that interfere with the way my heart is working. I guess one option just scares me more than the other. As for the expense, I'm in Canada where things maybe work a little differently from the US, and I have an amazing health care plan that covers most of the expense. For all the slagging that goes on about "Big-Pharma", I have to say that Bristol Myers has been very generous about covering what my health care plan doesn't, and I'm grateful. For what it's worth, my experience on Camzyos has been literally life changing and I'm so happy to have had that option. But my advice is worth what you paid for it. Listen instead to to your specialists. Get second opinions if you think you should. Wherever you end up - good luck!

Hi,

I am 8 days postop from having open heart septal myectomy at Mayo Rochester. I am 56, and I didn’t like the thought of having to get echocardiograms all the time with the medication. My cardiologist said that I could try the medicine, or that I could do the surgery, which was more of a “set it and forget it” solution. Due to my age and previous independent and active lifestyle, not to mention the financial angle, I hands-down chose the operation. I almost didn’t have to think about it. I think I took maybe two days to decide? Then I got on the surgery schedule.

I am so glad I did! Yippeeeee!

I, too, had an abdominal surgery go completely rogue 2.5 years ago, so I was deathly afraid of this open heart surgery. I was so terrified that I wasn’t going to live through it that I met up with all of my favorite people the week before my surgery in case I didn’t come through it. I imagined that it was going to be the hellscape that the last “recovery” was, but I couldn’t have been more wrong!

As I write this, 8 days after surgery, I am already feeling and moving better than I was six months after my abdominal surgery. I can’t really believe it, to be quite honest. I mean, I literally just got out of the hospital on Christmas Eve. And I’m only on Tylenol, so it’s not the painkillers talking!

I think lifestyle can be a big factor in choosing whether to take the medicine or consider the surgery. For me, the medicine just came with too many complications and drawbacks that I didn’t want to deal with. Like another person said, I, too, entertain the idea of living in another country, and that wouldn’t be possible on that drug. My age and desired lifestyle made me a good surgery candidate, even considering that I never really recovered from that last surgery that just about ended my life.

I hope this helped a little? Best of luck to you!

Yes, Joyce, I had testing over the summer for amyloidosis before I started on mavacamten (Camzyos) in October, and tested negative. It is one of a few conditions that can mimic the signs of HCM. The fact that you're being tested for it is a sign you're in good hands. Amyloidosis is no doubt serious, but I've not heard it described as a cancer.

And yes, it is scary to wonder about all these potential diagnoses and complications -- as we newly diagnosed and/or newly symptomatic folks climb the learning curve of new terminology, new testing and diagnostic protocols, new treatment options -- in short, as we learn to adapt and adjust to living our new normal.

One way I am learning to live with the fear of the unknown (no, I can't just will it away) is to self-educate, as you are doing. Keep asking questions, of health care providers, of peers (thank you Mayo Clinic for this site), of so many online sources -- especially including as I mentioned earlier in this thread, the HCMA -- so you can make fully informed decisions moving forward.

Thank you - I just got the results on the heart biopsy and it says "no amyloidosis" - Yay! I haven't talked to my cardiologist yet - but am feeling much relieved. Now on to what's next - probably a calcium channel blocker before Camzyos. Thank you for your reply!

Hi,

I am 8 days postop from having open heart septal myectomy at Mayo Rochester. I am 56, and I didn’t like the thought of having to get echocardiograms all the time with the medication. My cardiologist said that I could try the medicine, or that I could do the surgery, which was more of a “set it and forget it” solution. Due to my age and previous independent and active lifestyle, not to mention the financial angle, I hands-down chose the operation. I almost didn’t have to think about it. I think I took maybe two days to decide? Then I got on the surgery schedule.

I am so glad I did! Yippeeeee!

I, too, had an abdominal surgery go completely rogue 2.5 years ago, so I was deathly afraid of this open heart surgery. I was so terrified that I wasn’t going to live through it that I met up with all of my favorite people the week before my surgery in case I didn’t come through it. I imagined that it was going to be the hellscape that the last “recovery” was, but I couldn’t have been more wrong!

As I write this, 8 days after surgery, I am already feeling and moving better than I was six months after my abdominal surgery. I can’t really believe it, to be quite honest. I mean, I literally just got out of the hospital on Christmas Eve. And I’m only on Tylenol, so it’s not the painkillers talking!

I think lifestyle can be a big factor in choosing whether to take the medicine or consider the surgery. For me, the medicine just came with too many complications and drawbacks that I didn’t want to deal with. Like another person said, I, too, entertain the idea of living in another country, and that wouldn’t be possible on that drug. My age and desired lifestyle made me a good surgery candidate, even considering that I never really recovered from that last surgery that just about ended my life.

I hope this helped a little? Best of luck to you!

Hi @joycehocm, Thanks for updating the group about your visit! Have you had a chance to read some of the posts here on Connect regarding Cardiac Amyloidosis? There a many posts, and this is from awhile ago but very informative:
https://connect.mayoclinic.org/discussion/amyloidosis-2/
Here's one from John Hopkins (where you just were!):
https://www.hopkinsmedicine.org/health/conditions-and-diseases/cardiac-amyloidosis
And another from Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
You are well on your way to getting the right treatment, but it still must be a bit overwhelming having to go through all this testing. It's in your best interests to rule out anything else it could be, so trust in the process would be my advice!
When is your next appointment to rule out amyloidosis?
Do you see your cardiologist after the testing is done?

Hi,

I am 8 days postop from having open heart septal myectomy at Mayo Rochester. I am 56, and I didn’t like the thought of having to get echocardiograms all the time with the medication. My cardiologist said that I could try the medicine, or that I could do the surgery, which was more of a “set it and forget it” solution. Due to my age and previous independent and active lifestyle, not to mention the financial angle, I hands-down chose the operation. I almost didn’t have to think about it. I think I took maybe two days to decide? Then I got on the surgery schedule.

I am so glad I did! Yippeeeee!

I, too, had an abdominal surgery go completely rogue 2.5 years ago, so I was deathly afraid of this open heart surgery. I was so terrified that I wasn’t going to live through it that I met up with all of my favorite people the week before my surgery in case I didn’t come through it. I imagined that it was going to be the hellscape that the last “recovery” was, but I couldn’t have been more wrong!

As I write this, 8 days after surgery, I am already feeling and moving better than I was six months after my abdominal surgery. I can’t really believe it, to be quite honest. I mean, I literally just got out of the hospital on Christmas Eve. And I’m only on Tylenol, so it’s not the painkillers talking!

I think lifestyle can be a big factor in choosing whether to take the medicine or consider the surgery. For me, the medicine just came with too many complications and drawbacks that I didn’t want to deal with. Like another person said, I, too, entertain the idea of living in another country, and that wouldn’t be possible on that drug. My age and desired lifestyle made me a good surgery candidate, even considering that I never really recovered from that last surgery that just about ended my life.

I hope this helped a little? Best of luck to you!