Waldenström's Macroglobulinemia

Yes.

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

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?

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.

My wife and I have attended two. They are very informative with top notch presenters.

Art and Donna Mulholland

Hi Lori, my Mayo doc seems to be leaning that way from all of the prior UMN Fairview test results, but I'm still waiting on a new set of supplemental test results he wanted to run. My appt was just last Wed. so it may still be awhile.

Paul

Hi @artmulh, I look forward to learning more about you. Having attended two of the IWMF educational forums, I assume that you and your partner have been dealing with Waldenstrom's macroglobulinemia (WM) for a while. What would you like to share about your experience? What tip would you offer someone who has been newly diagnosed?

I was diagnosed with Waldenström's while a neurologist at a university teaching hospital who was looking for the cause of my Ocular migraines. in 2001, went on watch and wait until 2006. was getting pneumonia about twice a year, IGM was rising up to upper 900's. was also tired all the time. Received Rituxan infusions X4 late 2008 without benefit.

Went to Dana Farber (Dr Treon) after testing and finding lymph node problems, suggested treatment with Bendamustine and Rituxan X4 (completed 2010) followed by 12 months of bi-monthly Rituxan infusions.

Dramatically lowered IGM to 225 and remained in that are for over 10 years. Now 1350.

Suggestions. Get as much information as you can. IWMF Educational forums great for that, and the chance to meet and interact with other Waldenström's patients. But also find a Doctor with more than a little Waldenstrom's experience. also, there are numerous Waldenström's patient chapters in many locations. Contact the IWMF for one near you.

Lastly, keep a positive attitude. This is an indolent disease. Don't let it control your life,

Art

I was officially diagnosed with MGUS quite by accident after having bloodwork done to help explain frequency of sinusitus in February 2023. I then had a bone marrow biopsy which was most unpleasant. The hematologist that saw me did not gather all the pathology reports and slides initially to confirm diagnosis of WM. I decided to change to a new hematologist/oncologist who then put it all together, analzed the results and informed me that it is indeed WM. I now have my bloodwork checked every three months and see an expert blood cancer doctor familiar with WM. I am asymptomatic. It is so strange to have a condition that most people (like me initially) have never even heard of. I am so grateful this disease is slow growing and that I may not experience any symtoms for the remainder of my life.

Hi @lorkish, Welcome to Connect! Thank you for sharing your experience of finally getting diagnosed with WM. Diagnosing blood disorders can sometimes be challenging but your hematologist pretty much missed the mark! I read in another comment you posted about the high dosage of Eliquis this doctor had prescribed. You sure made the right move with changing hematologists. It sounds like you’re on a better treatment path now and have a doctor you can trust to help you make the right decisions going forward.
With your blood work every three months are there specific markers your doctor is looking for?