Rare Blood Cancer: Waldemstroms Macglobanemia
Living with a rare blood cancer is challenging.
On a BTK Inhibitor has to be careful of side effects. Trips to Boston from North Carolina at least every three months. Does anyone else have a rare blood cancer? How does it impact your life?
Hi
, I wanted to check in and see how you were doing. I also wanted to ask if you've visited our sister site: blood-cancer.com/. There may be a chance to connect with someone with the same type. - Warmly, Donna (Team Member) 
Hi
,
Thank you for sharing with us here. For educational purposes of others that might view this thread and want to learn more about possible side effects of BTK inhibitors, I am attaching a link to info I found via a search.I'm sorry that you need to travel for healthcare. I need to go to my CF clinic at least every 3 months for a 3-5 hour multi-provider visit, but was able to move to the city it is in, but I know most rare disease patients who need to see providers in specific areas cannot or do not want to move.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7727553/
Hugs,
Gina Miller,
Team Member
