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Profile picture for schimmi @schimmi

Hi @stonyah
I have been diagnosed with Stage IV CD10-/CD5- low grade B cell lymphoma, morphologically most consistent with nodal marginal zone lymphoma and we're doing 3-monthly labs to decide if/when to start treatment. I'm not crazy about Rituxan from what I read about it and started reading on this board to find possible alternatives. After reading your post I am wondering what the outcome was at the Michigan cancer center. I hope you're doing well!

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Replies to "Hi @stonyah I have been diagnosed with Stage IV CD10-/CD5- low grade B cell lymphoma, morphologically..."

Hi @schimmi It’s always a little scary starting a new treatment and I know you’re not crazy about having the Rituxan infusions for your B-cell lymphoma. But this drug has a proven track record for treating B-cell related issues.

I also had to receive rituximab (Rituxan) infusions weekly for a month to treat B-cell related inflammation on my spinal cord. It’s a strong anti-inflammatory drug. I had lost feeling from my waist to my toes and after receiving high doses (1000 ml) daily of IV steroids to reverse the damage, the Rituximab infusions prevented the inflammation from returning. It has worked beautifully.

My doctor explained that most patients have some reaction to the first infusion. But that the infusion specialists would be right there with me, ready to handle any side effect should it arise. I did have a reaction which came on subtly at first while I was reading a book. My throat had an odd feeling so I told the nurse. She immediatly gave me an injection (in my IV tube) of a steroid and Benadryl. Then slowed the drip rate. That was it. Crises averted and the subsequent infusions after that were uneventful. Which is typical for most people. I didn’t have any notable side effects except that my spinal cord healed and my ability to feel my legs, walking and balance all returned. For me Rituxan was a miracle drug. And I think you’ll find for many B-cell lymphoma patients this has been a beneficial treatment

There are a number of conversations in the forum with B-cell lymphoma patients. Here is a link to the search results: https://connect.mayoclinic.org/search/

Looking at your bio page I see that you’ve been a member since 2023, but this is your first time posting. So, belated Welcome to you! What brought you to Connect back then?