Hello (my 1st post) - I have Waldenstrom's - diagnosed 2007 or so. Had bad neuropathy which improved somewhat. Also fatigue, sweats, lost 20lbs. and respiratory infections.
Chemo in 2010-2011, after which my blood levels (IgM et al) improved to normal levels, but many after-effects.
Now the original symptoms are returning, I have a new hematologist/oncologist, and they've done a PET which found nodules in my lungs (yikes!)
Not sure what course we'll follow.
@deljr Welcome to Mayo Clinic Connect! I'm glad you found us; by the way, how did you find us? I'm always curious to hear people experiences and stories!
What does your hematologist/oncologist suggest as a course of treatment for you, now they have seen some nodules on your lungs? Have they told you what those nodules are, or is further testing warranted? Have additional blood tests shown your IgM numbers going up out of normal range?
While this condition is considered a stand-alone disorder, it can also fall under the umbrella of Non-Hodgkins Lymphoma. Within this group you found, Blood Cancers, there are some other conversations you might find useful to take a look at. From what I have been able to suss out, Waldenstrom can be low-level, and watch-and-wait after some treatment is common. I myself have multiple myeloma [initial staging at Stage III highest stage] and hoping to bring my IgM numbers down enough to go on a maintenance regimen at some time in the future.
I hope you have a support team available to you in the form of family and friends? Also, ask at your cancer center if there is a patient advocate or support group available for in-person or Zoom meetings Will you do that and let me know?
Ginger
Hello (my 1st post) - I have Waldenstrom's - diagnosed 2007 or so. Had bad neuropathy which improved somewhat. Also fatigue, sweats, lost 20lbs. and respiratory infections.
Chemo in 2010-2011, after which my blood levels (IgM et al) improved to normal levels, but many after-effects.
Now the original symptoms are returning, I have a new hematologist/oncologist, and they've done a PET which found nodules in my lungs (yikes!)
Not sure what course we'll follow.
Colleen Young, Connect Director | @colleenyoung | Apr 27, 2019
Hi @brewmaster, welcome to Connect. I moved your message to this existing discussion about Waldenstrom macroglobulinemia (WM) so that you could meet @pysullivan, whose husband also has WM.
Brewmaster, were you recently diagnosed? How are you doing?
My husband age 64 diagnosed last April 2018 with Waldenstrom with bone marrow biopsy, his main complaint was fatigue and did have a few episodes of numbing and tingling in fingertips occasionally, then in October he had an episode of severe headaches that were treated for a sphenoid sinus infection the edema was so bad along with headeaches they did an MRI/MRA of head which was normal, then they suspected Temporal Arteritis which they then did a bilateral biopsy that came back inconclusive, he was on a high dose of prednisone 60mg and has just weaned off as of March 1, he is still fatigued and now battling a URI, his Oncologist/Hematologist suggest treatment when his IGM level is 3,000 and his is 1600 now. He is frustrated with the not knowing and feeling so fatigued most days, he was always very active cycling, going to the gym etc.
Colleen Young, Connect Director | @colleenyoung | Mar 24, 2019
Hi @pysullivan, welcome to Connect. Here a few previous discussions in the community about Waldenstrom macroglobulinemia (WM), a type of non-Hodgkin lymphoma (NHL):
I'm tagging other members @sstouten@azjulie@dcp45 who have also talking about Waldenstrom. While we wait for others to join in, PYSullivan, why don't you tell us a bit more about you? Have you been recently diagnosed with WM? I assume watch and wait is the proposed treatment option at the moment, correct?
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@deljr Welcome to Mayo Clinic Connect! I'm glad you found us; by the way, how did you find us? I'm always curious to hear people experiences and stories!
Here is a link to what Mayo Clinic has to say about this rare blood disorder: https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967
What does your hematologist/oncologist suggest as a course of treatment for you, now they have seen some nodules on your lungs? Have they told you what those nodules are, or is further testing warranted? Have additional blood tests shown your IgM numbers going up out of normal range?
While this condition is considered a stand-alone disorder, it can also fall under the umbrella of Non-Hodgkins Lymphoma. Within this group you found, Blood Cancers, there are some other conversations you might find useful to take a look at. From what I have been able to suss out, Waldenstrom can be low-level, and watch-and-wait after some treatment is common. I myself have multiple myeloma [initial staging at Stage III highest stage] and hoping to bring my IgM numbers down enough to go on a maintenance regimen at some time in the future.
I hope you have a support team available to you in the form of family and friends? Also, ask at your cancer center if there is a patient advocate or support group available for in-person or Zoom meetings Will you do that and let me know?
Ginger
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5 ReactionsHello (my 1st post) - I have Waldenstrom's - diagnosed 2007 or so. Had bad neuropathy which improved somewhat. Also fatigue, sweats, lost 20lbs. and respiratory infections.
Chemo in 2010-2011, after which my blood levels (IgM et al) improved to normal levels, but many after-effects.
Now the original symptoms are returning, I have a new hematologist/oncologist, and they've done a PET which found nodules in my lungs (yikes!)
Not sure what course we'll follow.
-
Like -
Helpful -
Hug
1 ReactionHi @brewmaster, welcome to Connect. I moved your message to this existing discussion about Waldenstrom macroglobulinemia (WM) so that you could meet @pysullivan, whose husband also has WM.
Brewmaster, were you recently diagnosed? How are you doing?
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Like -
Helpful -
Hug
1 ReactionHas anyone been diagnosed with this?
My husband age 64 diagnosed last April 2018 with Waldenstrom with bone marrow biopsy, his main complaint was fatigue and did have a few episodes of numbing and tingling in fingertips occasionally, then in October he had an episode of severe headaches that were treated for a sphenoid sinus infection the edema was so bad along with headeaches they did an MRI/MRA of head which was normal, then they suspected Temporal Arteritis which they then did a bilateral biopsy that came back inconclusive, he was on a high dose of prednisone 60mg and has just weaned off as of March 1, he is still fatigued and now battling a URI, his Oncologist/Hematologist suggest treatment when his IGM level is 3,000 and his is 1600 now. He is frustrated with the not knowing and feeling so fatigued most days, he was always very active cycling, going to the gym etc.
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Like -
Helpful -
Hug
1 ReactionHi @pysullivan, welcome to Connect. Here a few previous discussions in the community about Waldenstrom macroglobulinemia (WM), a type of non-Hodgkin lymphoma (NHL):
- Waldenstroms and amyloidosis https://connect.mayoclinic.org/discussion/waldenstroms-and-amyloidosis/
You might also be interested in this discussion:
- Non Hodgkin's Lymphoma- Watch & Wait Approach https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-watch-wait-approach/
I'm tagging other members @sstouten @azjulie @dcp45 who have also talking about Waldenstrom. While we wait for others to join in, PYSullivan, why don't you tell us a bit more about you? Have you been recently diagnosed with WM? I assume watch and wait is the proposed treatment option at the moment, correct?