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.

ejrquast | @ejrquast | Apr 10, 2023

In reply to @belcar45 "That’s great to hear hope all goes well 😊 I was wondering if anyone knows what..." + (show)

Sorry to hear about your knee issue. I have never experienced a dent in my knee and not aware of any WM who have. It may be time to communicate with your hem/onc.

belcar45 | @belcar45 | Apr 10, 2023

In reply to @ejrquast "Sorry to hear about your knee issue. I have never experienced a dent in my knee..." + (show)

Thankyou for your reply greatly appreciated, when I tell them anything I’m having wrong with me they think I’m crazy and literally blow it off and send me on my way after chemo finished November 21 I am still short of breath badly and my stomach hurts and swollen and pain they say I’m fine and don’t care to hear it and there not putting my results up to my health records for me to view anymore

ejrquast | @ejrquast | Apr 11, 2023

In reply to @belcar45 "Thankyou for your reply greatly appreciated, when I tell them anything I’m having wrong with me..." + (show)

I am sorry to hear that you are not able to view your recent test results on line. It is helpful for us to be aware of our continued results.
I personally experienced being “short of breath.” For me, that improved as I gradually improved my physical exercise. I understand feeling exhausted and short of breath, but started with slow and short walks and increased slowly. It took months to experience improvement.
May I ask if you are seeing a WM specialist? If not, I can direct you to a new program with the IWMF for assistance with second opinion WM specialists.

belcar45 | @belcar45 | Apr 12, 2023

In reply to @ejrquast "I am sorry to hear that you are not able to view your recent test results..." + (show)

That’s great to hear I haven’t been engaged with anyone other than my haematologist and my gp that’s all I thought that they would say I should see a diet specialist or a health and physical fitness person but they have not said anything… I do have a lot of health problems with sore bones and when I get up and down it takes a toll it’s a huge effort and I can’t walk 20 metres without been out of breath I’d appreciate any help or contacts please

ejrquast | @ejrquast | Apr 16, 2023

The I.W.M.F. (International Waldenstrom’s Macroglobulinemia Foundation) if having an educational Forum, both in person and virtually, this Thursday-Sunday, April 21-23, but you are required to register to join or attend in person. The following is a uTube link for the IWMF President speaking briefly about the Forum: https://m.youtube.com/watch?v=paH0mc8mPAg
There is NO cost to virtually attend this week’s Forum. The international speakers are all WM specialists, including three from Mayo Clunic. You are able to watch sessions you are interested in.
I encourage any WM patients and/or caregivers to sign up for this extremely informative educational forum.

bob194903 | @bob194903 | Apr 16, 2023

Low-risk myself, recently diagnosed. Sorry no answers for you but here with you any way I can.

marymoreau1948 | @marymoreau1948 | Apr 16, 2023

Does Awaldstron's Lymphoma progress with more genetic mutations and protein antibodies?

Lori, Volunteer Mentor | @loribmt | Apr 17, 2023

In reply to @marymoreau1948 "Does Awaldstron's Lymphoma progress with more genetic mutations and protein antibodies?" + (show)

Hello @marymoreau1948, Welcome to Mayo Connect. There are several other members in our support group who have also been diagnosed with Waldstrom’s macroglobulinemia. Here’s a link to a current discussion with members @ejrquast @bob194903 @belcar45 @joannecathcart and others:
https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/
~
@ejrquast has also given an link to an educational opportunity for WM patients.
https://connect.mayoclinic.org/comment/843970/
Were you just recently diagnosed with this condition? Are you in a treatment plan?

jam5 | @jam5 | Apr 18, 2023

In reply to @loribmt "Hello @marymoreau1948, Welcome to Mayo Connect. There are several other members in our support group who..." + (show)

Has anyone taken Brukinsa, and can you share your experiences concerning side effects or how it has been tolerated?

Lori, Volunteer Mentor | @loribmt | Apr 18, 2023

In reply to @jam5 "Has anyone taken Brukinsa, and can you share your experiences concerning side effects or how it..." + (show)

Brukinsa is also known as Zanubrutinib. There are few members in the forum who have experience with this medication and most are in this discussion about Waldenström's Macroglobulinemia.

You’ll have to scroll back a little but here are the comments I’ve found with @pldgsph @newwaldenguy and @sidm. Below, I’ve provided the direct links that reference Brukinsa/Zanubrutinib
https://connect.mayoclinic.org/comment/746825/
~~~~
https://connect.mayoclinic.org/comment/746430/
~~~~~
https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/?pg=4#comment-830226
~~~~
https://connect.mayoclinic.org/comment/830461/
~~~~

And this from @sunfishgirl who was being switched to the medication a month ago.
~Want to connect with others with Splenic B cell Marginal Zone Lymphoma
https://connect.mayoclinic.org/comment/799826/
From the comments I read, it appears that this is a well tolerated drug with some positive results. I know you and your husband have reservations about starting this new medication because of Afib and other complications. Has this been run past his cardiologist?

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