1. < Hypertrophic Cardiomyopathy (HCM)
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Camzyos treatment location / expertise?

Posted by Faith @afaith, Aug 31 3:05pm

Hi, I’m recently diagnosed with O HCM this summer, and I think like everybody recently diagnosed I’m anxious and a little bit worried about the path ahead. I just discovered this connect site , and am so appreciative. Reading through the conversations is so reassuring to me, and rounding out my understanding of HCM in a way I was missing.

My local cardiologist in the end of June said he thought I would be a good candidate for Camzyos, and refers me to a specialist at the University of Vermont Hospital ( near me) that does that, appt there mid September. Meanwhile, I managed to get a second opinion first last week, from someone at Dartmouth, in New Hampshire , who confirms my obstructive HCM diagnosis and also says I’m a good candidate for Camzyos. Neither of these medical centers are listed as a HCM center of excellence. I am wondering, how much does that matter with this med treatment ? And just in general with Camzyos how much does the experience of the team matter in terms of getting good quality care. What number of prior patients treated
In a medical center is a baseline for competence? Welcoming ideas about that.

I’m quite sure that if I were getting surgery, I would only do that at the center for with excellence like the Mayo.
Trying to gather info about how much this matters with the Camzyos treatment??

I could try to get the Camzyos at someplace in Mass. like the Leahy clinic, or Tufts? Or go to the Mayo clinic? Or go with one of these places more local to me ?

Thanks in advance for your insights.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

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brumasterj | @brumasterj | Sep 4 9:15am
In reply to @afaith "Thanks for your message! It's helpful to hear what you and others have done. I was..." + (show)
Profile picture for Faith @afaith

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.

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Since camzyos is still new your team of prescribers is on the REMS program so they all work closely together monitoring you the patient. As the medicine is getting more attention the FDA is loosening its grip and allowing for less frequent echos.
At some point in the future the drug will probably be less monitored or completely replaced with the new drug thats being tested now!
I suffered to back to back exercised induced heart failures so by the time i was finally diagnosed correctly i was very weak and could not climb stairs or even a step ladder! I was diagnosed with HCM with severe LVOTO the mayo cardiologist said because of my youth and active life style surgery would be the best option for me and camzyos would get me stronger by allowing me to get back to moderate exercise!
It worked by allowing me to get back on my bicycle and doing activities i liked but it did have its limits! Im 11 weeks out had my followup echo 2 weeks ago and no obstruction found! Was allowed to start using a spin bike to start prepping me for my mountain biking:)
Hope things work out for you with all this soon:)

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Faith | @afaith | Sep 4 11:20am
In reply to @dbruskin "Faith - I am 78 years old and I was finally diagnosed correctly two years ago...." + (show)
Profile picture for dbruskin @dbruskin

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

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I'm sorry to hear the Camzyos and other meds aren't helping you more. Great you finally got a correct diagnosis ! That matters so much. I hope that the Camzyos's helped you somewhat. And also, thank you for saying that, it might be good for me to know what the realistic ballpark is for treament with this?

I hear you, about acceptance. So good you are there with that acceptance for the way you are.

Accepting ourselves the way we are , or accepting life as it is, is sometimes the most freeing thing we can do. I think I'm in the process with that, moving towards acceptance, or in acceptance, and sometimes out of acceptance, just about having HCM, and the SOB, and the (for me) complicated steps to understanding and making treatment choices, & the pace, ....seems, s...l....o....w.

I guess it takes most of us awhile to get the correct diagnosis, that was true for me too.

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Faith | @afaith | Sep 4 11:28am
In reply to @brumasterj "Since camzyos is still new your team of prescribers is on the REMS program so they..." + (show)
Profile picture for brumasterj @brumasterj

Since camzyos is still new your team of prescribers is on the REMS program so they all work closely together monitoring you the patient. As the medicine is getting more attention the FDA is loosening its grip and allowing for less frequent echos.
At some point in the future the drug will probably be less monitored or completely replaced with the new drug thats being tested now!
I suffered to back to back exercised induced heart failures so by the time i was finally diagnosed correctly i was very weak and could not climb stairs or even a step ladder! I was diagnosed with HCM with severe LVOTO the mayo cardiologist said because of my youth and active life style surgery would be the best option for me and camzyos would get me stronger by allowing me to get back to moderate exercise!
It worked by allowing me to get back on my bicycle and doing activities i liked but it did have its limits! Im 11 weeks out had my followup echo 2 weeks ago and no obstruction found! Was allowed to start using a spin bike to start prepping me for my mountain biking:)
Hope things work out for you with all this soon:)

Jump to this post

Wow, great that the surgery has worked so well for you ! congrats on no obstruction ! and using a spin bike! mountain biking next, very very wonderful. Thanks for sharing your experiences and outcome. So super nice to hear a success story. Sounds like a hard time earlier, scary. Great you got good care, and the Dr's knew what to recommend.

Thanks for that frame on Camzyos and the REMS program , that's helpful.

Would you be up for saying how old you are?

Thanks for your good wishes that you are sending, and eveyone's , really so kind !

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brumasterj | @brumasterj | Sep 4 6:57pm
In reply to @afaith "Wow, great that the surgery has worked so well for you ! congrats on no obstruction..." + (show)
Profile picture for Faith @afaith

Wow, great that the surgery has worked so well for you ! congrats on no obstruction ! and using a spin bike! mountain biking next, very very wonderful. Thanks for sharing your experiences and outcome. So super nice to hear a success story. Sounds like a hard time earlier, scary. Great you got good care, and the Dr's knew what to recommend.

Thanks for that frame on Camzyos and the REMS program , that's helpful.

Would you be up for saying how old you are?

Thanks for your good wishes that you are sending, and eveyone's , really so kind !

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57 years will be turning the corner soon:)
Mountain biking and hunting are my big hobbies was a decent runner at one time too till HCM started rearing its face! So i quit running not knowing what was happening! Then it started affecting my bike riding and hunting in the mountains!
Hopefully soon thats all in the past and I will start enjoying those things again
At least Dr Dearani my surgeon says i will be like im 20 years younger:)

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Faith | @afaith | Sep 4 8:09pm
In reply to @brumasterj "57 years will be turning the corner soon:) Mountain biking and hunting are my big hobbies..." + (show)
Profile picture for brumasterj @brumasterj

57 years will be turning the corner soon:)
Mountain biking and hunting are my big hobbies was a decent runner at one time too till HCM started rearing its face! So i quit running not knowing what was happening! Then it started affecting my bike riding and hunting in the mountains!
Hopefully soon thats all in the past and I will start enjoying those things again
At least Dr Dearani my surgeon says i will be like im 20 years younger:)

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Yay! ~ so so wonderful; to be well again, and and able to do those things you love again.
Thanks Bru for sharing your path of success with treatment. It means a lot to know there are possibilities ahead.

Happy 57 th, and happy trails !

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walkinggirl | @walkinggirl | Sep 5 9:14am

@afaith, I am glad to read that you seem to be on the right track to treating your HCM! Yes, too many have unfortunately taken too long to be diagnosed. I am in the Capital District/North Country area of NY and know that both UVM's and Dartmouth's are among the finest medical places in northern New England. As of now, neither of our immediate areas are homes to a COE, that could change in the future. Nevertheless, my cardiologist, just like the two you consulted with, are well-versed in HCM. I was referred to and quickly accepted at Mayo for a septal myectomy (close to my 76th birthday in 2022), when it was essential that the next step take place. My cardiologist did not recommend Camzyos because my gradient was too high. Like @brumasterj, I am an active person; within 6 months I had resumed my former active life. There will be both fear and courage along this journey as the best plan for you takes shape.

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brumasterj | @brumasterj | Sep 5 10:01am
In reply to @walkinggirl "@afaith, I am glad to read that you seem to be on the right track to..." + (show)
Profile picture for walkinggirl @walkinggirl

@afaith, I am glad to read that you seem to be on the right track to treating your HCM! Yes, too many have unfortunately taken too long to be diagnosed. I am in the Capital District/North Country area of NY and know that both UVM's and Dartmouth's are among the finest medical places in northern New England. As of now, neither of our immediate areas are homes to a COE, that could change in the future. Nevertheless, my cardiologist, just like the two you consulted with, are well-versed in HCM. I was referred to and quickly accepted at Mayo for a septal myectomy (close to my 76th birthday in 2022), when it was essential that the next step take place. My cardiologist did not recommend Camzyos because my gradient was too high. Like @brumasterj, I am an active person; within 6 months I had resumed my former active life. There will be both fear and courage along this journey as the best plan for you takes shape.

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@walkinggirl, You probably have mentioned this before in another post but curious to what your gradient was that prevented camzyos? My gradient was 48 resting and 122 valsalva

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Faith | @afaith | Sep 5 10:11am
In reply to @walkinggirl "@afaith, I am glad to read that you seem to be on the right track to..." + (show)
Profile picture for walkinggirl @walkinggirl

@afaith, I am glad to read that you seem to be on the right track to treating your HCM! Yes, too many have unfortunately taken too long to be diagnosed. I am in the Capital District/North Country area of NY and know that both UVM's and Dartmouth's are among the finest medical places in northern New England. As of now, neither of our immediate areas are homes to a COE, that could change in the future. Nevertheless, my cardiologist, just like the two you consulted with, are well-versed in HCM. I was referred to and quickly accepted at Mayo for a septal myectomy (close to my 76th birthday in 2022), when it was essential that the next step take place. My cardiologist did not recommend Camzyos because my gradient was too high. Like @brumasterj, I am an active person; within 6 months I had resumed my former active life. There will be both fear and courage along this journey as the best plan for you takes shape.

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hi Walkingirl, Thanks for your post, and yay, so wonderful that you had the surgery and are doing well in your active life.

I feel hopeful to hear another success story. I've been an
active person too, and it's just a different life to have to dial that back in obvious ways.

Thank you for the endorsement of the medical centers nearest me. Glad to hear that! ~And I'm now more aware as I learn more, the individual nature of HCM, and HCM treatment plans. So I can't know the path ahead until I get there; I may want/need to go to a COE. I too could end up having surgery recommended?

Holding space for fear, and courage. That sounds right, and feels helpful to hear. Thank you.

I have a little note of words on this, that work for me, from the Dali Lama:
" If when we get into a difficult situation, our will or our courage lessen, and we fall in to the laziness of feeling inferior, thinking that we could not possible accomplish such a difficut task, this diminishment of will cannot protect us from any suffering. It is important to generate courage corresponding to the size of our difficulties. "

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walkinggirl | @walkinggirl | Sep 5 3:47pm
In reply to @afaith "hi Walkingirl, Thanks for your post, and yay, so wonderful that you had the surgery and..." + (show)
Profile picture for Faith @afaith

hi Walkingirl, Thanks for your post, and yay, so wonderful that you had the surgery and are doing well in your active life.

I feel hopeful to hear another success story. I've been an
active person too, and it's just a different life to have to dial that back in obvious ways.

Thank you for the endorsement of the medical centers nearest me. Glad to hear that! ~And I'm now more aware as I learn more, the individual nature of HCM, and HCM treatment plans. So I can't know the path ahead until I get there; I may want/need to go to a COE. I too could end up having surgery recommended?

Holding space for fear, and courage. That sounds right, and feels helpful to hear. Thank you.

I have a little note of words on this, that work for me, from the Dali Lama:
" If when we get into a difficult situation, our will or our courage lessen, and we fall in to the laziness of feeling inferior, thinking that we could not possible accomplish such a difficut task, this diminishment of will cannot protect us from any suffering. It is important to generate courage corresponding to the size of our difficulties. "

Jump to this post

A couple - friends of ours - daughter had breast cancer which necessitated a mastectomy - she could not say enough good things about the UVM medical center. That's only one of many stories.

REPLY
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walkinggirl | @walkinggirl | Sep 5 3:59pm
In reply to @brumasterj "@walkinggirl, You probably have mentioned this before in another post but curious to what your gradient..." + (show)
Profile picture for brumasterj @brumasterj

@walkinggirl, You probably have mentioned this before in another post but curious to what your gradient was that prevented camzyos? My gradient was 48 resting and 122 valsalva

Jump to this post

My cardiologist had been reading the literature (2021-2022) and found that many patients on Camzyos eventually needed a myectomy. I pooh-poohed the entire HCM thing till 2/2022 when I had a syncope. I looked up on the Mayo Patient Portal: "Interestingly there is also an anomalous papillary muscle directly inserting into the anterior mitral leaflet which is also contributing to the obstruction. With Valsalva the gradient gets up to 157 mm of Hg through the LVOT. Maximal septal thickness is about 18 mm." I do not know the resting gradient - doesn't say anywhere, even on MY CHART for local care. After surgery, it was ZERO!

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