Waldenstrom macroglobulinemia Recently diagnosed

Posted by mrperezy50 @mrperezy50, Dec 21, 2022

I'm 40yr old male, just been recently diagnosed with Waldenstrom macroglobulinemia, I have no symptoms. I'm going to start chemo in a few weeks, what can I expect, does anyone have any experience with this cancer or treatment. Any advice will help.

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Hi @mrperezy50 Welcome to Mayo Clinic Connect. It’s easy to feel alone when you’ve been diagnosed with a an uncommon blood cancer. There are several members in the forum who also have Waldenstrom macroglobulinemia and have shared their stories and journeys. So you’ve come to the right place to find answers to your questions.

I’d like to introduce you to @ejrquast who is a font of information on WM and has provided links for International Waldenstrom’s Macroglobulinemia Foundation, IWMF, at https://iwmf.com/
List of Doctors who specialize in WM. https://connect.mayoclinic.org/comment/692115/

There are actually several discussions in the forum for WM. I’ll provide some links where you’ll meet fellow members @newwaldenguy @kincarnati
@jproctor. To find more discussions, simply type in WM in the search box at the top of the page. Some of them are dated but you can reverse the order with the “Oldest to Newest” button under the opening statement.

Waldenstrom macroglobulinemia: What to expect during watch & wait?
https://connect.mayoclinic.org/discussion/waldenstrom/
https://connect.mayoclinic.org/discussion/waldenstroms-and-amyloidosis/
You mentioned that you aren’t having any symptoms. Was this found with a random blood test for a physical?

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I'm sorry to hear of your diagnosis. Though I'm still watching and waiting, I find the material available from the International Waldenstrom's Macroglobulinema Foundation (www.IWMF.com) very helpful.
Best wishes

IWMF is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on downloading photos at the top to view all content. For more information, email info@IWMF.com or visit http://www.IWMF.com

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@loribmt

Hi @mrperezy50 Welcome to Mayo Clinic Connect. It’s easy to feel alone when you’ve been diagnosed with a an uncommon blood cancer. There are several members in the forum who also have Waldenstrom macroglobulinemia and have shared their stories and journeys. So you’ve come to the right place to find answers to your questions.

I’d like to introduce you to @ejrquast who is a font of information on WM and has provided links for International Waldenstrom’s Macroglobulinemia Foundation, IWMF, at https://iwmf.com/
List of Doctors who specialize in WM. https://connect.mayoclinic.org/comment/692115/

There are actually several discussions in the forum for WM. I’ll provide some links where you’ll meet fellow members @newwaldenguy @kincarnati
@jproctor. To find more discussions, simply type in WM in the search box at the top of the page. Some of them are dated but you can reverse the order with the “Oldest to Newest” button under the opening statement.

Waldenstrom macroglobulinemia: What to expect during watch & wait?
https://connect.mayoclinic.org/discussion/waldenstrom/
https://connect.mayoclinic.org/discussion/waldenstroms-and-amyloidosis/
You mentioned that you aren’t having any symptoms. Was this found with a random blood test for a physical?

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Yes, I went in for a yearly physical, my doctor did complete blood test and found some abnormally with my red, white blood cells, and platelets.

REPLY

Hi Mr. Perezy,
There is a very active support group for people with WM on Facebook. I hope you'll join us.
https://www.facebook.com/groups/wmsupportgroup
If you don't have symptoms, you may not need treatment yet. WM is a very rare disease – it represents less than 1% of cancers seen by the average hematologist/oncologist – even experienced lymphoma doctors may not be up-to-date with WM management. All of the doctors listed in the IWMF directory take a special interest in WM and are involved the latest WM clinical research. WM treatment is very seldom an emergency. Take enough time to figure out the best way forward so you'll have the best possible outcome.
All best,
Meg

The IWMF website contains a directory of hematologists/oncologists who take a special interest in WM and are involved the latest WM clinical research.
https://iwmf.com/wp-content/uploads/2022/04/IWMF_PHYSICIANS_DIRECTORY-2.pdf

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@megmangin

Hi Mr. Perezy,
There is a very active support group for people with WM on Facebook. I hope you'll join us.
https://www.facebook.com/groups/wmsupportgroup
If you don't have symptoms, you may not need treatment yet. WM is a very rare disease – it represents less than 1% of cancers seen by the average hematologist/oncologist – even experienced lymphoma doctors may not be up-to-date with WM management. All of the doctors listed in the IWMF directory take a special interest in WM and are involved the latest WM clinical research. WM treatment is very seldom an emergency. Take enough time to figure out the best way forward so you'll have the best possible outcome.
All best,
Meg

The IWMF website contains a directory of hematologists/oncologists who take a special interest in WM and are involved the latest WM clinical research.
https://iwmf.com/wp-content/uploads/2022/04/IWMF_PHYSICIANS_DIRECTORY-2.pdf

Jump to this post

@megmangin Welcome to Mayo Clinic Connect. Well, I must say you probably hold a record, being a member for almost four years and this is your first post! We're glad to have you here!
Ginger

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