HCM-ers: Introduce yourself or just say hi

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

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

Profile picture for valhenry2012 @valhenry2012

@colleenyoung
Hello. Hubby was to start Camzyos but was diagnosed now with Otolaryngeal cancer. He will need radiation and a few chemos. holding off on starting Camzyos now and that really sucks. Wondering how his treatment will affect his HCM

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@valhenry2012 ,
Hello and Welcome to Mayo Clinic Connect.
I am so sorry to hear that your husband has such a burden to carry, and you along with him!
It must be frightening and uncertain knowing he's got not just one issue, but another as well.

This is a link from the Head and Neck Cancer group you may find helpful.
And one of our esteemed Mentors, Don @dsh33782 is familiar with head and neck cancer, as he is a surviver of it...plus more!
https://connect.mayoclinic.org/comment/773041/
You ask a great question about how his treatment may affect his HCM...
but we can't answer that here. That's a question best left to his treating physician along with his cardiologist working together. No two people are the same, so it would be impossible to state with certainty.

Are you comfortable with his cardiologist and their expertise in treating HCM?
Are you near, or have you considered going to a Center of Excellence (COE) for treatment in this complicated case?
When does he start treatment?

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Hi my name is Melanie and I have HCM, I am on my second month of camzyos.

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Profile picture for memphis901 @memphis901

Hi my name is Melanie and I have HCM, I am on my second month of camzyos.

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@memphis901 Melanie, welcome to Mayo Clinic Connect. You have found a wonderful place to share your story and learn from others about their HCM/HOCM journey.
Have you have a chance to read the Camzyos group stories?
Here is a link in case you have not:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
How long have you known you had HCM?
Are you feeling better after two months of Camzyos?

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Profile picture for Colleen Young, Connect Director @colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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@colleenyoung
Hi my name is MelanieM & I going for my second echo for Camzyos. I felt better before the arrhythmia started. Maybe the medicine is causing me to be tired but I will find out next week from my Memphis Doctor. I hope to find a buddy that has obstructive HCM to talk to. I got HCM in March of this year and started Camzyos in August. I go to exercise 3-4 times a week. I teach 2 night a week.
This has been my journey.

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Profile picture for valhenry2012 @valhenry2012

@colleenyoung
Hello. Hubby was to start Camzyos but was diagnosed now with Otolaryngeal cancer. He will need radiation and a few chemos. holding off on starting Camzyos now and that really sucks. Wondering how his treatment will affect his HCM

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@valhenry2012, apologies for the late reply. I'm glad @karukgirl was able to direct you to the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/

I also want to tell you about a specialty called cardio-oncology. Heart issues can be a concern with some treatment options. You may ask about a cardio-oncology specialist or department where your husband is receiving cancer care.

Mayo Clinic offers a program to address heart problems associated with cancer treatment called cardio-oncology or for people who have a pre-existing heart condition when diagnosed with cancer. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment, and can help evaluate treatment when you have both cancer and heart conditions.

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Profile picture for memphis901 @memphis901

@colleenyoung
Hi my name is MelanieM & I going for my second echo for Camzyos. I felt better before the arrhythmia started. Maybe the medicine is causing me to be tired but I will find out next week from my Memphis Doctor. I hope to find a buddy that has obstructive HCM to talk to. I got HCM in March of this year and started Camzyos in August. I go to exercise 3-4 times a week. I teach 2 night a week.
This has been my journey.

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@memphis901, welcome. Here is a good discussion to help you connect with other member starting Camzyos:
- Anyone take new drug Camzyos (mavacamten) for HCM?https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/

There are many more: https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/?search=Camzyos&index=discussions

I wonder if this discussion might interest you"
- Weight Lifting and exercise with hypertrophic cardiomyopathy: Tips? https://connect.mayoclinic.org/discussion/weight-lifting/

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Profile picture for memphis901 @memphis901

@colleenyoung
Hi my name is MelanieM & I going for my second echo for Camzyos. I felt better before the arrhythmia started. Maybe the medicine is causing me to be tired but I will find out next week from my Memphis Doctor. I hope to find a buddy that has obstructive HCM to talk to. I got HCM in March of this year and started Camzyos in August. I go to exercise 3-4 times a week. I teach 2 night a week.
This has been my journey.

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@memphis901 I join @colleenyoung in welcoming you again to Mayo Clinic Connect.
You have come to the right place to find support for this disease.
It is a blessing to be able to share with another person who knows what you are going through, shares your same symptoms or questions and can give you a hand to hold or shoulder to lean on.
We are all in a different place with our HCM/HOCM, and those who have gone before you in the Camzyos treatment have much to share. And others, like me, who had open heart surgery can share that side with you.
Have you read up on hypertrophic cardiomyopathy? It's important to learn as much as you can so you can help your doctor in treatments going forward.
This is a link to an informative web site about HCM:
https://www.4hcm.org/
You were diagnosed in March, so it's probably still a lot to process.
When I learned what I had, I was stunned, but it started to make sense after I started reading all I could get my hands on.
My symptoms were gradual over time and I was misdiagnosed with four or five different heart conditions before finally getting the correct one.
You don't mention the medication you are on...is it a beta blocker? Those do make you tired...but so does HOCM!
It's good you are active...that will help you tremendously going forward.
In case you may not have read this, it is from the Mayo Clinic about HCM:
https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502
What do you teach?

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