Hi @pixiesusan. Here’s how to make sure you can respond directly to a member’s comment. ☺️
In this case, you wanted to respond to @audreyl23 and her lovely response to you.
Right under her reply is a little oval ‘button’ that says Reply. If you click there, it will open up a little blue box where you can type your reply. It will have the notification right on top to Audrey, in your reply, that she has a message. ☺️

Another way, if you see a comment or a member where you’d like to reply and make sure they get a notification, type in their @name as it was written in their comment. Always put the @ sign in front of the name. The official user name for all of us should include that @ sign..like mine is @loribmt

I’m so happy you joined Connect. I know you’re having a difficult time finding other people who have CCUS and it really can help to not feel so alone when there are others who share the same diagnosis. We all need a lifeline sometimes!
In no way should you admonish yourself for not understanding your diagnosis. You mentioned even your PC is clueless. That’s because this out of the scope of your primary doctor and the reason that having a leukemia specialist is an important part of your health team to monitor your CCUS.
Dana Farber is a top cancer institute and from what you’ve mentioned of your doctor there, I don’t think you need to have any misgivings about her credentials or expertise. But if you don’t feel as though you are being seeing frequently enough then you need to discuss that with your doctor.
You have legitimate questions and would like some clarification on the potential for your disease to progress. You’d like to know what to expect for treatment options if things do change. You’d like to better understand what caused this disease and how this is impacting your life.

With my leukemia diagnosis and subsequent bone marrow transplant, believe me, I had no clue! That was never on my radar! My husband and I asked a ton of questions and not one time, did any of my doctors balk at having to take time to explain the details of what was taking place. We had a little notebook with questions so we could go right down the list without wasting time. Armed with extensive knowledge I learned about my disease and the transplant, I went from being a bystander to an integral part of my own health team and now I help others.

So I absolutely understand you feel as though you’re sitting on the sidelines watching what’s ’happening to you’ when you want to be an integral part of your team! It’s ok to be that person! We have to be our own advocates for health.
For your peace of mind, I encourage you to check in with your doctor soon instead of waiting until next year’s appointment. What do you think? ☺️