1. < Blood Cancers & Disorders

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!

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djf31 | @djf31 | Dec 21, 2023
In reply to @squidlee "So sorry to hear about your diagnosis. I think it is hard to tell sometimes, and..." + (show)
@squidlee

So sorry to hear about your diagnosis. I think it is hard to tell sometimes, and maybe it’s both! Fatigue is a big one for me. It’s much better than when I was first diagnosed, but it is still there. I had shortness of breath at the beginning, but it is also better. My IgM was 5489 at diagnosis, and I had hyperviscosity which caused two eye strokes. Am now at 1460. Again, much better, but I still tire out and every now and then, do have shortness of breath. Wish you the best in your journey. At least it’s an indolent cancer, so that brings me some peace of mind.

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Thank you for your comments. Wishing you the best too.

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djf31 | @djf31 | Dec 30, 2023
In reply to @colleenyoung "Welcome, @djf31. It is all too common to dismiss symptoms as a sign of getting older..." + (show)
@colleenyoung

Welcome, @djf31. It is all too common to dismiss symptoms as a sign of getting older and hard to distinguish the difference when living with a chronic conditions, especially Waldenstrom macroglobulinemia where fatigue is one of the top symptoms.

I'm tagging @ejrquast @sagenest @sstouten @psue4 @squidlee and others who live with WM and can share their experiences.

You mention that the tired spells or the shortness of breath don't last long. Do you notice a pattern? Do they happen at specific times of the day or are triggered by certain activities?

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Yes, the tiredness and shortness of breath are more common in the morning when I get up.

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djf31 | @djf31 | Dec 30, 2023
In reply to @squidlee "So sorry to hear about your diagnosis. I think it is hard to tell sometimes, and..." + (show)
@squidlee

So sorry to hear about your diagnosis. I think it is hard to tell sometimes, and maybe it’s both! Fatigue is a big one for me. It’s much better than when I was first diagnosed, but it is still there. I had shortness of breath at the beginning, but it is also better. My IgM was 5489 at diagnosis, and I had hyperviscosity which caused two eye strokes. Am now at 1460. Again, much better, but I still tire out and every now and then, do have shortness of breath. Wish you the best in your journey. At least it’s an indolent cancer, so that brings me some peace of mind.

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Thank you.

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sagenest | @sagenest | Dec 31, 2023
In reply to @djf31 "I was diagnosed in 2022 with WM, and lately I have been having tired spells and..." + (show)
@djf31

I was diagnosed in 2022 with WM, and lately I have been having tired spells and shortness of breath. Don't know if these are some symptoms of WM or just older age. They don't last very long.

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It sounds like it could be your heart. I had the same symptoms and was diagnosed with AFIB and had an ablation procedure on my heart. I feel much better and have more energy. I was diagnosed in 2009 and have no symptoms of WM except it always shows in my blood work.

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careysuzi | @careysuzi | Jan 1 2:57pm

Just diagnosed with WM. I have minimal symptoms. No treatment yet.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 1 8:59pm
In reply to @careysuzi "Just diagnosed with WM. I have minimal symptoms. No treatment yet." + (show)
@careysuzi

Just diagnosed with WM. I have minimal symptoms. No treatment yet.

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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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1 reply
careysuzi | @careysuzi | Jan 2 1:36pm

It started with Anemia about 18 months ago. Then I was diagnosed with MGUS. About 3 months ago my hematologist/Oncologist decided we needed to do a total body CAT scan and Bone marrow Biopsy. Both of these procedures were done early December. The CAT scan came back clean and the BM numbers were off enough to be diagnosed with WM. I have symptoms of fatigue and paresthesia which sometimes makes me crazy. I am anemic, stay around 10 HGb with normal viscosity and platelets and WBC. IGM is 1200. I am a vibrant 75 year old with 15 grandchildren and a very active life. For now my doctor and I have decided to wait and see what happens with my symptoms before considering treatment. Bloodwork to be repeated in March. I am wondering if other patients have this paresthesia? It doesn't seem to be something that others complain about. I live in Los Angeles and we are a medical family which is not always the best. I am also wondering how important it is to get the genetic testing for the 2 genes that usually goes along with this diagnosis. I have a son and grandson that have illnesses connected with B-cell abnormalities. I am happy to have you out there. Now that the holidays are over, I need to get a better handle as to how this disease will effect my life. Thank You.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 3 9:40am
In reply to @careysuzi "It started with Anemia about 18 months ago. Then I was diagnosed with MGUS. About 3..." + (show)
@careysuzi

It started with Anemia about 18 months ago. Then I was diagnosed with MGUS. About 3 months ago my hematologist/Oncologist decided we needed to do a total body CAT scan and Bone marrow Biopsy. Both of these procedures were done early December. The CAT scan came back clean and the BM numbers were off enough to be diagnosed with WM. I have symptoms of fatigue and paresthesia which sometimes makes me crazy. I am anemic, stay around 10 HGb with normal viscosity and platelets and WBC. IGM is 1200. I am a vibrant 75 year old with 15 grandchildren and a very active life. For now my doctor and I have decided to wait and see what happens with my symptoms before considering treatment. Bloodwork to be repeated in March. I am wondering if other patients have this paresthesia? It doesn't seem to be something that others complain about. I live in Los Angeles and we are a medical family which is not always the best. I am also wondering how important it is to get the genetic testing for the 2 genes that usually goes along with this diagnosis. I have a son and grandson that have illnesses connected with B-cell abnormalities. I am happy to have you out there. Now that the holidays are over, I need to get a better handle as to how this disease will effect my life. Thank You.

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What does your oncologist suggest as far as getting the genetic testing done to confirm WM? At this point, since you’re in an active surveillance stage anyway, it wouldn’t change the situation. But maybe it would be good to know if you have the mutated gene that is causing the condition. I’m not sure how that affects the treatment down the road. But since this is usually a slowly developing type of lymphoma, there would be time for testing in the future.

There is a good discussion in the WM group that you might want to follow if you haven’t already seen it.

WM, What to expect during watch and wait:
https://connect.mayoclinic.org/discussion/waldenstrom/
You’ll be able to connect with other WM members such as @ejrquast @sagenest @lesliemont and many others who share their experiences.

I also found another source of information and guidelines for WM patients.
This from the International WM foundation:
https://iwmf.com/
And this article from the National Comprehensive Cancer Network:
https://www.nccn.org/patients/guidelines/content/PDF/waldenstrom-patient.pdf
Where do you experience the paresthesia? Is this all over or just your extremities?

REPLY
1 reply
careysuzi | @careysuzi | Jan 3 6:58pm
In reply to @loribmt "What does your oncologist suggest as far as getting the genetic testing done to confirm WM?..." + (show)
@loribmt

What does your oncologist suggest as far as getting the genetic testing done to confirm WM? At this point, since you’re in an active surveillance stage anyway, it wouldn’t change the situation. But maybe it would be good to know if you have the mutated gene that is causing the condition. I’m not sure how that affects the treatment down the road. But since this is usually a slowly developing type of lymphoma, there would be time for testing in the future.

There is a good discussion in the WM group that you might want to follow if you haven’t already seen it.

WM, What to expect during watch and wait:
https://connect.mayoclinic.org/discussion/waldenstrom/
You’ll be able to connect with other WM members such as @ejrquast @sagenest @lesliemont and many others who share their experiences.

I also found another source of information and guidelines for WM patients.
This from the International WM foundation:
https://iwmf.com/
And this article from the National Comprehensive Cancer Network:
https://www.nccn.org/patients/guidelines/content/PDF/waldenstrom-patient.pdf
Where do you experience the paresthesia? Is this all over or just your extremities?

Jump to this post

The paresthesia is all over and moderate. Sometimes gets itchy. Very minimum mild neuropathy. I am also very hungry. Have not lost an ounce. I suppose when my numbers become more abnormal (if and when) these symptoms will become exaggerated. Trying not to think about it.

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champ9810 | @champ9810 | Jan 4 4:40pm

Like you I have paresthesia, but it comes & goes. I was diagnosed with WM last year in February. I had a short wait & see & started Rituxan treatments in June. My doc is very pleased that my blood panel numbers greatly improved. We have not discussed genetic testing. All the best with managing your situation.

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