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?
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 | 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?
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.
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
I was diagnosed with WM in 2014. Since then, data shows that certain mutations, MYD88 and CXCR4, determine which treatments have better outcomes. The mutations are only found by a bone marrow biopsy. The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is an amazing educational and support resource for patients and families. I happen to be an IWMF MN and WI Support Group Co-Leader and would be happy to give you direction to those amazing IWMF resources.
I was diagnosed with Waldenstrom macroglobulinemia July of 2021. I went to the emergency room for severe back pain and after six hours I was admitted to the hospital for a possible kidney stone and kidney failure. The next day the Dr. said I had good news and bad news. The good news I passed the kidney stone and the bad news I had CANCER!
I felt like a character in a Charlie Brown cartoon where everything was mumbled, and I could only hear the word CANCER!!!
Initially, it was believed I had Multiple Myloma. Upon further blood work and a bone marrow sample which was sent to Mayo, it was determined I had Waldenstrom's macroglobulinemia. I started several plasmaphersis treatments and one chemotherapy with bendamustine and rituximab.
Several weeks later, and about thirty pounds lighter, I was readmitted to the hospital after a visit with my oncologist.
I was unable to eat anything and developed a SEVERE RASH covering my entire body!! I was itching from my head to the bottom of my feet. I was redder than a ripe tomatoe, had swollen lips and eventually my skin peeled from the top of my head, ears, hands, back and almost my entire body. Later the rash seemed to correlate with IgM levels.
While in the hospital oral chemotherapy was started using ibrutinib. Upon discharge from the hospital it took about three months for my rash and skin peeling to stop. I started to eat actual food and not supplement drinks. The food no longer tasted metalic nor did I have to use plastic utensils.
My oncologist arranged for me to go to Mayo Clinic in Rochester, MN. I spent two days in Mayo and was referred to Dr. Binder for consultation. I was impressed with the time he took to listen to me and answer questions I had. He reaffirmed my oncologist in Sioux Falls, SD was doing what he could and was right about how to treat my condition.
I did several blood draws and a twenty-four hour urine sample. Dr. Binder suggested further testing to help determine issues I am having with pain in my hands etc.
I am so glad I have a strong support system of God, Family and friends!!!! I couldn't ask for better Physicians and people taking care of me.
Linda, I am so sorry to hear that you had extreme rashes. How are you doing on Ibrutinib? I took Ibrutinib for just over two years. Sounds like your local specialist and Dr. Binder work well together. May you continue to do well on Ibrutinib.
I was diagnosed with Waldenstrom macroglobulinemia July of 2021. I went to the emergency room for severe back pain and after six hours I was admitted to the hospital for a possible kidney stone and kidney failure. The next day the Dr. said I had good news and bad news. The good news I passed the kidney stone and the bad news I had CANCER!
I felt like a character in a Charlie Brown cartoon where everything was mumbled, and I could only hear the word CANCER!!!
Initially, it was believed I had Multiple Myloma. Upon further blood work and a bone marrow sample which was sent to Mayo, it was determined I had Waldenstrom's macroglobulinemia. I started several plasmaphersis treatments and one chemotherapy with bendamustine and rituximab.
Several weeks later, and about thirty pounds lighter, I was readmitted to the hospital after a visit with my oncologist.
I was unable to eat anything and developed a SEVERE RASH covering my entire body!! I was itching from my head to the bottom of my feet. I was redder than a ripe tomatoe, had swollen lips and eventually my skin peeled from the top of my head, ears, hands, back and almost my entire body. Later the rash seemed to correlate with IgM levels.
While in the hospital oral chemotherapy was started using ibrutinib. Upon discharge from the hospital it took about three months for my rash and skin peeling to stop. I started to eat actual food and not supplement drinks. The food no longer tasted metalic nor did I have to use plastic utensils.
My oncologist arranged for me to go to Mayo Clinic in Rochester, MN. I spent two days in Mayo and was referred to Dr. Binder for consultation. I was impressed with the time he took to listen to me and answer questions I had. He reaffirmed my oncologist in Sioux Falls, SD was doing what he could and was right about how to treat my condition.
I did several blood draws and a twenty-four hour urine sample. Dr. Binder suggested further testing to help determine issues I am having with pain in my hands etc.
I am so glad I have a strong support system of God, Family and friends!!!! I couldn't ask for better Physicians and people taking care of me.
Linda, I was diagnosed with WM in 2014. I posted recently and included my connection with the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) and their exceptional resources for patients and families.
If you would like to talk, please do not hesitate to contact me.
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Hi @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?
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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1 ReactionHas anyone been diagnosed with this?
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?
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Helpful -
Hug
1 ReactionHello (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 Reaction@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
-
Like -
Helpful -
Hug
4 ReactionsI was diagnosed with WM in 2014. Since then, data shows that certain mutations, MYD88 and CXCR4, determine which treatments have better outcomes. The mutations are only found by a bone marrow biopsy. The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is an amazing educational and support resource for patients and families. I happen to be an IWMF MN and WI Support Group Co-Leader and would be happy to give you direction to those amazing IWMF resources.
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with Waldenstrom macroglobulinemia July of 2021. I went to the emergency room for severe back pain and after six hours I was admitted to the hospital for a possible kidney stone and kidney failure. The next day the Dr. said I had good news and bad news. The good news I passed the kidney stone and the bad news I had CANCER!
I felt like a character in a Charlie Brown cartoon where everything was mumbled, and I could only hear the word CANCER!!!
Initially, it was believed I had Multiple Myloma. Upon further blood work and a bone marrow sample which was sent to Mayo, it was determined I had Waldenstrom's macroglobulinemia. I started several plasmaphersis treatments and one chemotherapy with bendamustine and rituximab.
Several weeks later, and about thirty pounds lighter, I was readmitted to the hospital after a visit with my oncologist.
I was unable to eat anything and developed a SEVERE RASH covering my entire body!! I was itching from my head to the bottom of my feet. I was redder than a ripe tomatoe, had swollen lips and eventually my skin peeled from the top of my head, ears, hands, back and almost my entire body. Later the rash seemed to correlate with IgM levels.
While in the hospital oral chemotherapy was started using ibrutinib. Upon discharge from the hospital it took about three months for my rash and skin peeling to stop. I started to eat actual food and not supplement drinks. The food no longer tasted metalic nor did I have to use plastic utensils.
My oncologist arranged for me to go to Mayo Clinic in Rochester, MN. I spent two days in Mayo and was referred to Dr. Binder for consultation. I was impressed with the time he took to listen to me and answer questions I had. He reaffirmed my oncologist in Sioux Falls, SD was doing what he could and was right about how to treat my condition.
I did several blood draws and a twenty-four hour urine sample. Dr. Binder suggested further testing to help determine issues I am having with pain in my hands etc.
I am so glad I have a strong support system of God, Family and friends!!!! I couldn't ask for better Physicians and people taking care of me.
Linda aka Puffwithfluff
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2 ReactionsLinda, I am so sorry to hear that you had extreme rashes. How are you doing on Ibrutinib? I took Ibrutinib for just over two years. Sounds like your local specialist and Dr. Binder work well together. May you continue to do well on Ibrutinib.
Linda, I was diagnosed with WM in 2014. I posted recently and included my connection with the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) and their exceptional resources for patients and families.
If you would like to talk, please do not hesitate to contact me.