1. < Hypertrophic Cardiomyopathy (HCM)
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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 24, 2024
In reply to @katiekins "Yes sad it didn't work for me. If yours is inherited then a good chance it..." + (show)
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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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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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katiekins | @katiekins | Apr 24, 2024
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)
Profile picture for neymil @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, 2024

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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katiekins | @katiekins | Apr 24, 2024
In reply to @neymil "I'm not sure about UK....ask your Doctor about robotic surgery as an option..." + (show)
Profile picture for neymil @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, 2024
In reply to @katiekins "Is this available in the UK? Seeing the cardiologist tomorrow! Thanks for that reply." + (show)
Profile picture for katiekins @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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katiekins | @katiekins | Apr 24, 2024
In reply to @neymil "You may have discovered this already, buy robotic surgery is available which does not require cutting..." + (show)
Profile picture for neymil @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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neymil | @neymil | Apr 23, 2024
In reply to @mckenzie541 "Hello all, my name is McKenzie. I am 25 years old and live in the US...." + (show)
Profile picture for mckenzie541 @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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katiekins | @katiekins | Apr 22, 2024
In reply to @dwc62 "Thank god you got off the Mavacamten, I have not had too many side effects (knock..." + (show)
Profile picture for dwc62 @dwc62

Thank god you got off the Mavacamten, I have not had too many side effects (knock on wood).

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Have you had any side effects at all? My cardiologist said to me that anyone with an inherited heart condition (i.e. HOCM) will fare better on Mavacamten. I don’t have the inherited type so maybe that’s why. Keep well my friend.

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dwc62 | @dwc62 | Apr 22, 2024
In reply to @katiekins "Thank you David for your comments. Yes I agree with you upon research but have had..." + (show)
Profile picture for katiekins @katiekins

Thank you David for your comments. Yes I agree with you upon research but have had HOCM for around 15 yrs and pretty much symptom free (lately a few) but have never had Atrial fibrillation until I started Mavacamten (also a known side effect). I have had A F for around a month now and stopped Mavacamten about a month ago AF has stopped. Can only assume it’s the drug disappointingly. Very happy for those that have had their lives turned around. Regards

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Thank god you got off the Mavacamten, I have not had too many side effects (knock on wood).

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katiekins | @katiekins | Apr 20, 2024
In reply to @dwc62 "I was reading some information on HCM it stated Atrial Fib and HCM are connected. You..." + (show)
Profile picture for dwc62 @dwc62

I was reading some information on HCM it stated Atrial Fib and HCM are connected. You may want to look into it.

David

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Thank you David for your comments. Yes I agree with you upon research but have had HOCM for around 15 yrs and pretty much symptom free (lately a few) but have never had Atrial fibrillation until I started Mavacamten (also a known side effect). I have had A F for around a month now and stopped Mavacamten about a month ago AF has stopped. Can only assume it’s the drug disappointingly. Very happy for those that have had their lives turned around. Regards

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