Camzyos thoughts? Good or bad

@cindyw9999 thanks for bringing your view to the discussion. It's easy for folks on one side of the question to take up all of the oxygen, so it's important to get "the rest of the story" (Paul Harvey, ABC News Radio). Sorry Camzyos didn't work for you. I hope surgery or whatever other treatment you get works much better.

@boatsforlife
I was not trying to be one sided as I did say it was just my experience

Apologize if I offended you or anyone

My Camzyos journey was nothing short of a disaster. I know it works for some

Just hone from septal myectomy and feel better than I have in 6 months

@cindyw9999 it appears I was completely unclear in my intent - what I meant to communicate is that your opinion here **IS** super-important and needs to be heard. The very last thing on my mind was that you were being one-sided. My comment was meant to suggest that the whole conversation would be one-sided if it were only those of us on the pro-Camzyos side being heard. Folks who are looking for what people have experienced NEED to hear both sides, including yours. So, I'm super sorry if my previous message came across in any other way. (I'm also sorry if a second version of this appears - I thought I had posted the apology an hour or two ago but I'm not seeing it. Better safe than sorry.)

@boatsforlife
No problem and thanks for clarifying 😍

@cindyw9999 How is your recovery from surgery going? I am so glad to read "feel better than I have in 6 months." Camzyos: There are about 3 ways it can affect people. It's a miracle drug; it does nothing or it helps for a time and then it doesn't. It was still in the testing stages in 2022 and not offered to me. I had a septal myectomy at Mayo.

@walkinggirl
Had myectomy may 29th at NYU Langone. Doing really well. Can’t recommend them enough. All horrible symptoms gone, walking everyday and slowly getting my life back
I was petrified for the surgery and although it’s a major operation and long recovery, I am so glad I did it and can move forward!

@cindyw9999 What great news that you are moving forward!! I think petrified doesn't even come close to describing the before surgery feelings. All who know you will now see you setting a great example of having courage and overriding your fears.

I've been taking Camzyos for 4 months now. After 3 months my gradients hadn't shown much improvement but I felt like my SOB was improving a great deal. Unfortunately I was diagnosed shortly after with colon cancer and soon after developed blood clots in both lungs and my left leg. Started treatment with blood thinners and surgery has been pushed back to the end of June. Of course the SOB has returned as bad as it was in the beginning. Had an echo done two days ago and it showed that my gradients have improved. If not for the colon cancer I feel like the SOB would have improved even more. So here I am, hoping the colon resection is successful and my lungs clear because I feel like the Camzyos was working well for me. Best of luck to you with your HCM treatment!

@blusso I see that this is your first post. Hello and welcome to Mayo Clinic Connect! You are dealing with several serious medical issues. I have never been on Camzyos, it was in the testing stages when I had a septal myectomy. From what I have read and when I questioned my doctor to get his opinion/what he read in the medical literature, there are 3 things that seem to happen. It's a miracle drug. It does nothing at all. It works for a while and then it doesn't work. I do not think anyone has figured out why there is that discrepancy, but I am sure researchers are studying it. The advertisements on TV state a zillion side effects, that only one person experiencing any particular side effect makes no difference - it's listed as a side effect. Has your doctor verified that your colon cancer has a bearing on your SOB? Will you need to stop the blood thinners or Camzyos for the colon surgery? You may find it helpful to look at the Colorectal Cancer Support Group. Wishing you a successful surgery!

@cindyw9999 So very glad surgery recovery is going well! Thank you for sharing your story!