Waldenstroms Macroglobulemia

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

Hi @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?

Sorry 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.

It 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.

Thanks so much for sharing your experience---this is so, so helpful. I hope you continue to feel great and sending big hugs!

I was diagnosed with WM early this past summer, after a bone marrow biopsy. My symptoms were an enlarged spleen and results of lab work.
I was started on 5 months of chemo 2days once a month but after 3 months was told I had a mutant cell that was blocking its effectively. Was taken off and 4 weeks later started on “Brukinsa.” Felt wonderful on Brukinsa. No after effects, no fatigue and blood work was approaching normal. But cancer can be devious. I was diagnosed with a second cancer unrelated and now under chemo and radiation for colon cancer. They took me off of the Brukinsa. I am now on Capecitabine plus a twice infusion and 5 day a week radiation for 5 weeks. My life is filled with appointments, lab work and new name of drugs that I don’t care to know. Once I am them rough this and back to treating WM, I hope my old life will be back and I can spend a summer of hiking, biking and traveling.

Welcome to Connect, @adklg. I love your photo! You have a very positive inner radiance that will help get you through all of this medical drama.
I’m sorry to hear you also have colon cancer along with WM…nothing like a double whammy! It’s encouraging that you had such great results and no side effects from the Brukinsa for WM. Hopefully you can return to the treatments in the future. In the meantime, my goodness, 5 days a week for 5 weeks for radiation is a challenging schedule, along with the infusions. Some of the treatments we go through to rid our bodies of cancer can really test our mettle. I’ve been there too and people would tell me to take “one day at a time”…when realistically, it was more like 1 minute at a time to get through each day. But then we come out on the other side, survivors, thrivers and overcomers! I felt like a super hero…invincible (with a new vocabulary LOL)
Wishing you well on this cancer odyssey so you can get back to things you love besides hanging out in doctor’s offices. Will you please let me know how you’re coming along on your treatments? Sending a hug.

I'm new to the world of Waldenström's Macroglobulinemia - having been diagnosed last month.
I'm on Brukinsa (oral chemo) and am hoping to glean insights from others with this blood cancer. And, I will share as my journey evolves.
Thanks to Mayo Clinic for this forum.

Hi @ranchgal4sure! Ok, this is a really unique name and I’d love to hear the story behind it! ☺️ By the way, Welcome to Connect.
There are quite a few discussion with members who have WM. This is a great link for discovering conversations with members such as @ejrquast @mike02041950 @lorkish @artmulh and a host of others in the various discussions.
https://connect.mayoclinic.org/group/blood-cancers-disorders/search=Waldenstrom%20macroglobulinemia%20&index=discussions
If you haven’t already, you might want to check out the International WM Foundation for additional support: https://iwmf.com/

What type of symptoms were you experiencing before you were diagnosed?

Hi Lori,
Many thanks for your welcoming message 🙂
I'll definitely check out the links including international site for WM.
My first symptoms were fairly sporadic and mild (dyspnea and presyncope). Yet, I was concerned so asked my PCP to order bloodwork. After the idiopathic anemia diagnosis I was referred to a Hemotologist Oncologist who ordered numerous tests - including bone marrow biopsy which confirmed WM.
I'll look forward to following others and sharing as my journey continues 🏞