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Waldenstroms Macroglobulemia
Hello---I have been a watch and wait MGUS patient and now my oncologist believes I have WM due to lab tests, spleen, etc. Had a bone marrow biopsy last week along with CT Scans as she found swollen/enlarged lymph nodes in my neck, chest, groin.
Still waiting for all the reports and the gene typing before my appointment next week, but have some questions for those of you who may know more that can help me. The CT scans do not show masses but she felt them plus my neck, under arm and groin are tender and painful. Has anyone else experienced this? Also, still no night sweats but have lost weight and no appetite. I know she will answer the questions, but just trying to understand more. Thanks ---appreciate any comments or your experience.
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Been on immunotherapy for about 8 months. Imbruvica pills then started infusions three months my night sweats are more cold sweats than drenching. Most of body hot and uncomfortable except for feet which are numb and cold. A fan in my face at night helps. Numbers just started coming down. So sorry for you. A confusing complicated illness. Keep on top of docs for treatment
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3 ReactionsHi @katytx, if you use the group search function, you will find many discussions and members talking about Waldenstrom’s Macroglobulinemia. See here:
https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Waldenstrom%20macroglobulinemia%20&index=discussions
Have you received a definite diagnosis of WM after testing last week?
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1 ReactionSorry for not seeing your message, but yes, WM was confirmed and testing indicated positive for the MYD88 gene.
My oncologist did the risk stratification and it looks like I may not need treatment for a couple of years---unless of course I develop more symptoms. Have lab testing for hyperviscocity on Friday to see how things look and get a baseline. It's a lot of information to absorb and monitor, but going to do my best to improve the quality of my general health until I need to receive treatment. Thanks for the support.
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4 ReactionsIt truly is a confusing and complicated illness. My only symptoms were feeling like I wasn't getting enough oxygen when I was even doing my simple daily walks. But when hiking up a hill, took a big toll on me, my friends insisted I go to the doctors. I was found to have WM, MYD88, and hyperviscosity syndrome. Things slowly got worse, where I felt like I was walking drunk and having to hold onto things. Dizzy spells and morning headaches. But thankfully that's all. They did get worse and I had to check myself into the ER. They did plasmapheresis and I was a whole new person. 2 of those treatments then started on Imbruvica and no more symptoms. Only been on it two weeks but so far no side effects. I'm feeling great! And I pray that you get to that point too.
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2 ReactionsThanks so much for sharing your experience---this is so, so helpful. I hope you continue to feel great and sending big hugs!
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