Connect
← Return to Waldenstroms and amyloidosis
Discussion
Comment receiving replies
Finally 🙂 🙁 I have a diagnosis from a Mayo CLL doc. He said I have something that "acts like CLL". And, because of my unmutated IGHV and -17p, that I am in a higher risk group. His recommendation is to join his new Mayo trial looking at Acalabrutinib (or A+O) for naive patients.
It's certainly not cut & dry. My Fairview doc is not convinced "that all of the clones represent CLL since by morphology, at least the lymph node looked more like a B-cell lymphoma with plasmacytic differentiation (usually either Waldenstrom's or marginal zone lymphoma) and you have the elevated IgM which is not often seen with CLL either." However, she does think that A or A+O would still be a good course.
I will go over the options with the Mayo doc mid-April and decide how to proceed.
If you have any thoughts/wisdom to share, please do!
Replies to "Finally :-) :-( I have a diagnosis from a Mayo CLL doc. He said I have..."
Connect
@mrgreentea, it sounds like another piece of the puzzle has been placed, but the picture remains incomplete. Hence the smile and frown emoji. It is good news that there is a clinical trial that may be right for your diagnosis. While the option is available, it is your choice whether it is right for you. Ask questions.
You might appreciate this information, including videos from Mayo Clinic about participating in clinical trials, terms you'll learn, and making the decision:
- About Clinic Trials https://www.mayo.edu/research/clinical-trials/about-clinical-studies
- Deciding to take part https://www.mayo.edu/research/clinical-trials/deciding-to-volunteer
I look forward to hearing what you learn at your upcoming appointment. Please share.