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Waldenstrom macroglobulinemia: What can I expect with chemo?

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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almondman2015 | @almondman2015 | Jan 14, 2024

Does anyone know if there is treatment or research going on for MUGUS using CRISPR?

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Colleen Young, Connect Director | @colleenyoung | Jan 18, 2024
In reply to @amelton "I was diagnosed with WM in Dec 23' had a lymph node biospy in Nov came..." + (show)
@amelton

I was diagnosed with WM in Dec 23' had a lymph node biospy in Nov came back low-grade B cell lymphoma/WM Monday I had a bone marrow biospy dr will start treatments soon. Wasn't sure what to expect with treatment thank you for writing on your daughters journey its relieved some anxiety about treatment.

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Hi @amelton, what treatment will you begin? How soon? How are you doing?

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travelmom4 | @travelmom4 | 1 day ago
In reply to @megmangin "Hi Mr. Perezy, There is a very active support group for people with WM on Facebook...." + (show)
@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

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Hi, so sorry. With this being such a rare blood cancer. What lead to your diagnosis. I have very high Total IgM low igg but I’ve been super sick for while. My Dr referred me to hematology and oncology. This is one of the issues they mentioned. Trying to connect with others who might have high IgM

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djf31 | @djf31 | 13 hours ago
In reply to @travelmom4 "Hi, so sorry. With this being such a rare blood cancer. What lead to your diagnosis...." + (show)
@travelmom4

Hi, so sorry. With this being such a rare blood cancer. What lead to your diagnosis. I have very high Total IgM low igg but I’ve been super sick for while. My Dr referred me to hematology and oncology. This is one of the issues they mentioned. Trying to connect with others who might have high IgM

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Mr. Perez, I read where you said you had no symptoms, but that you were starting chemo soon. My question is, did your doctor suggest this? I was diagnosed 3 years ago, but I am on a wait and watch prodical.

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