Waldenstrom any new diagnosis

Hi @mv1953 Welcome to Connect. There are several members here who also have been diagnosed with Waldenstrom's Macroglobulinemia or WM for short! It's quite a mouthful!

If you use the group search function, you will find many discussions and members talking about Waldenstrom’s Macroglobulinemia.
Here are the results of the search for you:
https://connect.mayoclinic.org/group/blood-cancers-disorders/
Seeing that you're new to the diagnosis, I'm sure you have a lot of unanswered questions. So please feel free to look through the discussion titles and jump into any conversation to ask a fellow member.
Also, the International WM Foundation is a wonderfully helpful resource for WM members. This is the link to their website:
https://iwmf.com/
What has your doctor suggested as a treatment plan or are you able to be in active surveillance?

@loribmt The IWMF videos of Mayo Drs Kapoor and Ansell from the recent conference in Ohio are very helpful IMO.

I have WMF and myelofibrosis but have not heard of anyone else with both. Are there special concerns when both are present?
Suggestions?
My doctor doesn’t tell me much and seems to minimize both cancers. I’ve been on Hydrea for two years, get 4 Retuximab infusions every 4-5 months.
I’m doing well, feel quite well except for tiredness.
Am I alone in this diagnosis?

@dunewalker
In my limited experience, when doctors minimize concerns it's because they recognize a condition that is easily treatable with a good prognosis. That being said, there is no excuse for not explaining this to your satisfaction. Don't let them off the hook next time and if you can, bring someone with you to tag team your doctor. A good bit of their job is to reassure you that they have things under control so you don't leave uninformed and worried. Sometimes they need a little help getting there.

Thanks, Kjoed. That’s a good reminder.
I do trust my doctor and am thankful that he tries to put me at ease re my health.
I know I’m in good hands.