Waldenström's Macroglobulinemia

Paul,
If you search IWMF on youtube there are many speakers and you can view examples of previous discussions. As an example, one of the speakers from last year was Dr Paludo from Rochester. I hope this link works, Hope this helps.

Hi Paul, I’m going to tag @ejrquast for you. She is a support group leader for I.W.M.F, MN/WI and may have information for you.

I know you were having some more tests to find a firm diagnosis for your blood condition. Was WM the final conclusion?

Hello, I am interested in anyone's experience if you have ever had the chance to attend the International IWMF Educational Forum. I see that the next Annual IWMF Ed Forum will be in Seattle 3-5 May 2024. https://iwmf.com/iwmf-educational-forum/

I would love to know if it would be worth going to – pros / cons & good-to-know to get the best out of it should one attend.

Thank you!
Paul

Yes.

Like you I have paresthesia, but it comes & goes. I was diagnosed with WM last year in February. I had a short wait & see & started Rituxan treatments in June. My doc is very pleased that my blood panel numbers greatly improved. We have not discussed genetic testing. All the best with managing your situation.

The paresthesia is all over and moderate. Sometimes gets itchy. Very minimum mild neuropathy. I am also very hungry. Have not lost an ounce. I suppose when my numbers become more abnormal (if and when) these symptoms will become exaggerated. Trying not to think about it.

What does your oncologist suggest as far as getting the genetic testing done to confirm WM? At this point, since you’re in an active surveillance stage anyway, it wouldn’t change the situation. But maybe it would be good to know if you have the mutated gene that is causing the condition. I’m not sure how that affects the treatment down the road. But since this is usually a slowly developing type of lymphoma, there would be time for testing in the future.

There is a good discussion in the WM group that you might want to follow if you haven’t already seen it.

WM, What to expect during watch and wait:
https://connect.mayoclinic.org/discussion/waldenstrom/
You’ll be able to connect with other WM members such as @ejrquast @sagenest @lesliemont and many others who share their experiences.

I also found another source of information and guidelines for WM patients.
This from the International WM foundation:
https://iwmf.com/
And this article from the National Comprehensive Cancer Network:
https://www.nccn.org/patients/guidelines/content/PDF/waldenstrom-patient.pdf
Where do you experience the paresthesia? Is this all over or just your extremities?

It started with Anemia about 18 months ago. Then I was diagnosed with MGUS. About 3 months ago my hematologist/Oncologist decided we needed to do a total body CAT scan and Bone marrow Biopsy. Both of these procedures were done early December. The CAT scan came back clean and the BM numbers were off enough to be diagnosed with WM. I have symptoms of fatigue and paresthesia which sometimes makes me crazy. I am anemic, stay around 10 HGb with normal viscosity and platelets and WBC. IGM is 1200. I am a vibrant 75 year old with 15 grandchildren and a very active life. For now my doctor and I have decided to wait and see what happens with my symptoms before considering treatment. Bloodwork to be repeated in March. I am wondering if other patients have this paresthesia? It doesn't seem to be something that others complain about. I live in Los Angeles and we are a medical family which is not always the best. I am also wondering how important it is to get the genetic testing for the 2 genes that usually goes along with this diagnosis. I have a son and grandson that have illnesses connected with B-cell abnormalities. I am happy to have you out there. Now that the holidays are over, I need to get a better handle as to how this disease will effect my life. Thank You.

Welcome to Connect, @careysuzi. It’s great to have you here in the Waldenström's Macroglobulinemia support group where you can talk with other members who share the same diagnosis.

Since this is a new diagnosis for you I’m sure you have a lot of questions. Here is a link to a few educational articles that you might find helpful:
https://www.healthline.com/program/navigating-waldenstroms-disease
You mentioned that you have minimal symptoms with your WM. Was this found with bloodwork from a routine physical?

Just diagnosed with WM. I have minimal symptoms. No treatment yet.