HCM-ers: Introduce yourself or just say hi

@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.

@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.

@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?

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

@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?

@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

Hello Ellen @evw, and welcome to Mayo Clinic Connect. Connect is here to do just that...connect you with others who share your same condition and allow you to feel support.
I know what you mean about not having much support with HOCM...when I first found out I was so surprised, didn't know what it was, could barely spell it and had no one to talk to.
That all changed when I found Mayo Clinic Connect.

Have you had a chance to poke around here on Connect? There is a Camzyos group here that have a lot of information they have shared.
Here are a couple of links to the Camzyos folks:
https://connect.mayoclinic.org/comment/1370280/
https://connect.mayoclinic.org/comment/1227383/
And here is a link to the Camzyos site:
https://www.camzyos.com
You can also stroll through the pages of Camzyos questions and answers by typing in "Camzyos" in the search bar at the top of the page. There are lots of Q &A there!

Don't get discouraged, this could be a frustrating process...but with a little help from your cardiologist and your new friends here on Connect, hopefully you will get to the place you need.

Camzyos is a miracle for some, and for others does not work. That's because we are all unique and no two of us are alike.
You would do well to learn as much as you can so you can be a better advocate for yourself and help with decisions about your treatment.

I am not an expert on insurance or Medicare, but I do believe Mayo Clinic takes Medicare.
You could ask those questions about insurance by contacting the Mayo Clinic here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us
Well...I sure gave you a lot of homework, didn't I!
I don't want to overwhelm you with tons of information, so just take your time and read through some of this and hopefully you will find something that helps you.
When do you see your doctor again to discuss treatment options?

Sorry to hear your insurance is not accepted at Mayo! Yes camzyos is expensive but your prescribing team should be able to help in finding ways to make it very affordable. Like $10.00 a month affordable! Yes camzyos does work so i hope ykur able to find a cardiologist that is at a COE
Good luck with everything

I am Ellen05121941.
Age 84. Diagnosed HOCM 2008, Born with it. live in small Arizona town with rural hospital. not much support here. Out of breath even with one block walk. Current interventional cardiologist recommends Camyzos. Very expensive, does it help? Phoenix Mayo not available with current insurance, need to find different plan or maybe original Medicare. Comments please,

Hello and Thank you for your encouraging reply. I am having surgery at Johns hopkins hospital. I was actually a nurse there before i retired. I worked as a PACU /critical care nurse for many years in NYC but of course I took care of patients in hospital beds so didn’t see how they did at home. Thanks for the tips on bras and info on recliners. I’m going to order a wedge pillow so I’m able to have my head elevated without an electric recliner. Thanks again!