Treatment for WM
My husband has just begun treatment for WM. He's having 5 infusion treatments, spaced 3wks apart, of Rituximab (with dexamethasone, antihistamine, paracetamol) along a 5 day 2x a day cyclophosphamide & associated additional antivirals/antibiotics.
The first infusion was well tolerated and he's on the last day of cyclophosphamides.
He's 73. His brother & his wife are flying in for a visit next week and hasn't, and doesn't want to tell them til there here that he's in treatment. I'm concerned that they'll unwittingly expose him to illness.
Am I being overcautious?
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Welcome to Connect, @revdiv You are absolutely right to be concerned with your husband’s potential risk for illness while in treatment for his WM. The Rituximab and other medications he’s taking can greatly reduce his immune system leaving him vulnerable to viral, bacterial or fungal infections.
I can understand his reluctance to tell his brother and sister in law about his new diagnosis and treatments until they arrive. And of course, that’s a very personal matter and it’s his right to decide when and how to let people know. However, it’s really important right now that he doesn’t set himself up for exposure. Covid, influenza and RSV are on the uptick. Each are challenging in themselves for anyone healthy. When someone has a compromised immune system, even a simple cold can become a major event. I know this from personal experience. So it’s better to be safe than sorry.
So…what do you do? Will these guests be staying in your home? Do you know if they receive their routine vaccinations for flu, Covid or RSV? Would they and/or your husband consider wearing masks when they’re together? If the weather is nice, depending on where you are, spending more time outside would be ideal. But inside, I’d suggest you harken back to the Covid protocols for safety.
I’m glad to hear your husband is tolerating the treatment well. How long ago was he diagnosed? Was he having symptoms that led to his diagnosis?
Thanks for all that. They are meant to stay with us and do keep up on their boosters. We can do Covid protocols, keep our distance, and they will have a separate ensuite room.
He's been anemic his whole life and his mother had "a blood disease" that she finally died with in 2009. In the IWMF literature they report that some percentage of WM patients have a first degree relative who had it.
He was getting more & more fatigued and when he had bloods done for a prostate ablation the IgM spike was profound. He'd been having nose bleeds, bruising, and increasing foot neuropathy (which we now understand was from the disease progression).
The hematologist ok'd the prostate procedure, he got 4 units of blood, and the nosebleeds and bruising have stopped.
Back in the early 2000s when his mother in NL had whatever she had, she was given transfusions and Aranesp, which seemed to work for her some.
So, definitive diagnosis following bone marrow biopsy 3wks ago.
Our genetics can sure play a large part in our lives beyond hair and eye color. ☺️ I’m glad your husband was finally diagnosed so that he could get the treatments he needs to keep the WM under control.
We have quite a few members in the forum who share their experiences with Waldenstrom macroglobulinemia. You might want to peruse some of the conversations. Feel free to pop in anywhere to comment or ask questions.
Here are the two searches I did to pull up related discussions on WM.
~WM search:
https://connect.mayoclinic.org/search/?search=WM
~Waldenstrom macroglobulinemia search:
https://connect.mayoclinic.org/search/?search=Waldenstrom+macroglobulinemia
I hope you and your husband have a lovely reunion with his brother and wife. As long as everyone is mindful and respectful of the situation, you should all be able to relax and enjoy your time together…just use common sense and life can go on. ☺️
Does his brother have any health issues?
Nothing contagious or concerning. Well managed Afib. I'll snoop around some more at other people's posts to see if I can learn some more about what our next 6 months might look like. Thanks!