What is Waldenström's Macroglobulinemia with LPL?

Waldenström's Macroglobulinemia with LPL mutations affects a portion of patients with this rare blood cancer, and connecting with others who share this specific experience can be really valuable. The community here understands the unique challenges that come with WM, and sharing experiences with the LPL variant might help others learn about treatment responses and management strategies.

LOL is the same as WM. They mean the same. Some physicians prefer to use LPL because it's pretty much a more recognized name that a higher number of providers would recognize. When I was first diagnosed officially in 2017 after the MGUS diagnosis in 2015 even my primary recognized the name from his education but knew nothing of the disease. I ran into very few who in the field who did not even know the name. It's been amazing how much public the cancer has received in so little time. I was lucky to get diagnosed when I did as Dr. treon had only discovered the infusion of Rituxan 2 years previous. It's not for all but it was for me. My bone marrow biopsy also tested mutations and I showed the mutation MYD88/L265P. It's really important to know your mutation which is invaluable when it comes to treatment. My infusions in 2017 and 2022 both successfully resolved my peripheral neuropathy in my legs... Currently the legs are minimal but the feet not so much at all.

If I can help with the knowledge I've gained over the years, I'd be glad to. Physicians over the years have fewer hours to spend on researching. My oncologist has been working in the field as the chief but he has maybe a few years left before retirement. He does not subscribe to the blood journal or have time for anything other than what he can do in the day. He's even returning or making calls on Sunday evening at 9:30... That's when he called me last week. Since I have really nothing but free time I've spent the last decade reading the monthly journals. Naturally I monitor any and all papers from the Bing center. Initially it was Dr. Treon but I've included Dr. Costello. Anything I find I review with my current oncologist. I did have a primary treatment that took over after my initial treating retired. During the 1st meeting I discussed the cancer with him and his experience with WM. Well almost two years later I learned he didn't have experience and his focus and training was women's health, particularly breast cancer than when I asked why he didn't agree with my PN being related to WM he denied saying that. I gave him the date and page number of his report and he became very annoyed asking how I could read it. When I told him reports are available in the portal, he was not happy and questioned if he was the doctor for me. He also confirmed his actual medical focus and to my surprise admitted any papers I gave him on new research data, he tossed in the can. I think he was probably annoyed he was caught in such a concernable error. He then went on to take back...... Other info he previously stated which gave him the appearance of more credibility. I really loved that infusion center and my initial treating oncologist. When he left his patients were randomly assigned taking no consideration into disease. Unfortunately many facilities locally have had to merge under one because of financial issues and the amount of physicians leaving this area to where there are better salaries and a lower patient burden in regards to numbers. I think it is that way in many areas. Anyways, as usual, a flying squirrel has distracted my attention. Happens quite a bit So.... I may be able to help lol but might head off on a tangent elsewhere... But still disease related.