Waldenström's Macroglobulinemia

Posted by Yellersam @yellersam, Jan 31, 2012

Hi, my dad has recently been diagnosed with WM. First things first; he told me 90% of his bone marrow was infected with the cancer. How severe would that be compared to other patients? He also falls into the high risk category. Has anybody here with WM fall into the high risk category as well?
Much thanks to all!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@loribmt

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?

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Yes.

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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

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@mrgreentea

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

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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?

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@mrgreentea

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

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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.
https://www.youtube.com/watch?v=wROOb2EBUEw

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@mrgreentea

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

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

Art and Donna Mulholland

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@loribmt

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?

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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

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@artmulh

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

Art and Donna Mulholland

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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?

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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

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