1. < Hypertrophic Cardiomyopathy (HCM)

Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!

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neymil | @neymil | Apr 23 7:29pm
In reply to @mckenzie541 "Hello all, my name is McKenzie. I am 25 years old and live in the US...." + (show)
@mckenzie541

Hello all, my name is McKenzie. I am 25 years old and live in the US. I just wanted to say thank you to everyone in these forums, they’ve really helped me try to keep a positive mind through out. I was diagnosed with obstructive hypertrophic cardiomyopathy 3 years ago, my doctor kind of dropped the ball and I wasn’t even on meds and didn’t realize the extent of my condition. Recently I was blindsided and told I need open heart surgery. I got the referral and go to my consultation to hear that there’s this new miracle treatment and maybe I can avoid having open heart surgery. Reading all your guys experiences is really giving me hope! I am terrified at the same time though. Praying I have good results and can live a normal life, I have young children that I want to watch grow up.
Thanks for letting me vent and introduce myself 😊

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You may have discovered this already, buy robotic surgery is available which does not require cutting open the chest !

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2 replies
katiekins | @katiekins | Apr 24 5:15am
In reply to @neymil "You may have discovered this already, buy robotic surgery is available which does not require cutting..." + (show)
@neymil

You may have discovered this already, buy robotic surgery is available which does not require cutting open the chest !

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Is this available in the UK? Seeing the cardiologist tomorrow! Thanks for that reply.

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1 reply
neymil | @neymil | Apr 24 6:21am
In reply to @katiekins "Is this available in the UK? Seeing the cardiologist tomorrow! Thanks for that reply." + (show)
@katiekins

Is this available in the UK? Seeing the cardiologist tomorrow! Thanks for that reply.

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I'm not sure about UK....ask your Doctor about robotic surgery as an option...

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1 reply
katiekins | @katiekins | Apr 24 6:51am
In reply to @neymil "I'm not sure about UK....ask your Doctor about robotic surgery as an option..." + (show)
@neymil

I'm not sure about UK....ask your Doctor about robotic surgery as an option...

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Thanks for the quick reply.....my cardiologist keeps talking about minimally invasive surgery. In other words a 3/5 inch cut down the middle, not as previously done breaking the breast bone! Might have to fly to The States....cant find a thing anywhere saying robotic in the UK. Oh how I wish Camzyos had worked for me. It apparently works better (as I have mentioned on here before) for patients who have inherited HOCM, mine is not therefore didn't work sadly.

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neymil | @neymil | Apr 24 7:01am

Sorry to hear the medication was not effective...I haven't started mine yet, I'm still contemplating surgery....if you can have minimal invasive surgery performed without cutting the bone that's a blessing for sure !

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1 reply
katiekins | @katiekins | Apr 24 7:39am
In reply to @neymil "Sorry to hear the medication was not effective...I haven't started mine yet, I'm still contemplating surgery....if..." + (show)
@neymil

Sorry to hear the medication was not effective...I haven't started mine yet, I'm still contemplating surgery....if you can have minimal invasive surgery performed without cutting the bone that's a blessing for sure !

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Yes sad it didn't work for me. If yours is inherited then a good chance it will work! I can't figure out what is minimally invasive and what is robotic what's the difference? Any clues? My feeling is robotic is in the States (not here yet) and minimally invasive is in the UK but still a scar. Are you young? Sorry to ask. Thanks for replying as most people don't understand.

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neymil | @neymil | Apr 24 7:45am
In reply to @katiekins "Yes sad it didn't work for me. If yours is inherited then a good chance it..." + (show)
@katiekins

Yes sad it didn't work for me. If yours is inherited then a good chance it will work! I can't figure out what is minimally invasive and what is robotic what's the difference? Any clues? My feeling is robotic is in the States (not here yet) and minimally invasive is in the UK but still a scar. Are you young? Sorry to ask. Thanks for replying as most people don't understand.

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I'm 53...mine was inherited. Robotic surgery accesses the heart through several incisions on the left side just under the armpit....

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1 reply
katiekins | @katiekins | Apr 24 8:34am
In reply to @neymil "I'm 53...mine was inherited. Robotic surgery accesses the heart through several incisions on the left side..." + (show)
@neymil

I'm 53...mine was inherited. Robotic surgery accesses the heart through several incisions on the left side just under the armpit....

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Goodness me such a quick reply...thank you. So young then...Ok I understand a bit more now. I think the surgeon wants to minimally cut down the middle to repair the mitral valve as well which may or may not need doing. I suggested doing the thickening first (round 1.6/1.7 mm to which he said if the mitral valve needs doing too we will have to go in twice. I am on verapamil 80mgs at night and 40mgs am plus 3 mgs prednisolone for aches. What are you on if any? I am getting out of breath after eating and better on after lunchtime. How about you? Sorry for all the questions a big decision coming.

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neymil | @neymil | Apr 24 9:48am
In reply to @katiekins "Goodness me such a quick reply...thank you. So young then...Ok I understand a bit more now...." + (show)
@katiekins

Goodness me such a quick reply...thank you. So young then...Ok I understand a bit more now. I think the surgeon wants to minimally cut down the middle to repair the mitral valve as well which may or may not need doing. I suggested doing the thickening first (round 1.6/1.7 mm to which he said if the mitral valve needs doing too we will have to go in twice. I am on verapamil 80mgs at night and 40mgs am plus 3 mgs prednisolone for aches. What are you on if any? I am getting out of breath after eating and better on after lunchtime. How about you? Sorry for all the questions a big decision coming.

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I'm not taking any medication currently except high blood pressure medication. I am scheduled for an Echo. And then soon to go on camzyos. My situation is not as severe as yours, but will progress. I am considering surgery If it's done with robotics.

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1 reply
katiekins | @katiekins | Apr 24 11:30am
In reply to @neymil "I'm not taking any medication currently except high blood pressure medication. I am scheduled for an..." + (show)
@neymil

I'm not taking any medication currently except high blood pressure medication. I am scheduled for an Echo. And then soon to go on camzyos. My situation is not as severe as yours, but will progress. I am considering surgery If it's done with robotics.

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I have had this 15 yrs and a mild case they say but of course will progress so better late than never. Camzyos could be a game changer for you if yours is inherited. Your call. I am only on calcium channel blockers which essentially are for high blood pressure. Thanks for replying.

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