Lymphoplasmacytic Lymphoma that is not WM?

Posted by monicalu2626 @monicalu2626, Jan 1 1:14am

Hi, I’m seeking others who are living with LPL that is not Waldenstroms. (IgG vs IgM)
I would appreciate hearing about your experience please. After eight Rituximab treatments my bone marrow involvement only reduced from 70% to 43%. We were sure hoping for a better outcome.
TIA and Happy 2026!

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renee83 | @renee83 | Apr 30 9:37pm

I am! Diagnosed in July 2024. It was found following a routine blood test that showed anemia. Then came the whirlwind of labs, bone marrow biopsy and pet scan, followed by genetic testing.

shaegrace13 | @shaegrace13 | May 2 5:18pm

Hi happy I have found my people I have non igm lpl trying to learn more I am being seen at MSK and my home town Binghamton Ny doctors I am 56 women

shaegrace13 | @shaegrace13 | May 3 8:56am

In reply to @shaegrace13 "Hi happy I have found my people I have non igm lpl trying to learn more..." + (show)

@shaegrace13 I was diagnosed March of 2026

jerry48 | @jerry48 | May 3 10:29am

In reply to @jerry48 "@jonyb My kappa Light Chains were @ 400 initially. One month after my initial treatment with..." + (show)

@jerry48 As a follow up to my treatment for non WM LPL.
My kappa light chains have dropped monthly from 400 to 100 to 45 to 37 with treatment using monthly Bendamustine and Rituximab. Kappa/lambda FLC ratio down to 1.89 presently from the initial 15. And with that drop in LC I have had a really good improvement in my axonal distal neuropathy. Biggest improvement is in muscle strength, numbness persists.
This past month however I am having a rougher time tolerating the chemo with nausea, diarrhea, and fatigue. My hematologist/oncologist felt that I have gotten maximum benefit from the Bendamustine, that there are more risks in continuing it, so we are discontinuing that but will continue the Rituximab for an additional 2 cycles. Initially we had a goal of LC less than 20 but the doc felt that might be overly optimistic especially in patients over 70.
Will be monitoring LC levels every 3 months after treatment stops.
I hope this info might be helpful to someone out there

Lori, Volunteer Mentor | @loribmt | May 3 12:18pm

In reply to @renee83 "I am! Diagnosed in July 2024. It was found following a routine blood test that showed..." + (show)

Hi @renee83 and @shaegrace13 I just want to welcome you both to Mayo Connect. It looks like you’ve started your LPL journeys about 2 years apart.
@renee83 are you currently in a treatment for your LPL? If you are, did that start soon after your initial diagnosis?

@shaegrace13 What has your doctor suggested for you? Was your diagnosis also found after routine blood work or were you having symptoms that led you to the discovery?

shaegrace13 | @shaegrace13 | May 3 4:03pm

In reply to @loribmt "Hi @renee83 and @shaegrace13 I just want to welcome you both to Mayo Connect. It looks..." + (show)

It happened because I had an MRI for back pain and they found something in my bone marrow so I had a bone marrow biopsy first was diagnosed as Wm than MGus and than went to second opinion at MSK and I have non igm lpl my blood work has shown that I have anemia since 2015 but my primary didn’t think it was anything wrong with it I was wondering why I was tired all the time was told that must be my normal so I am lucky I got an MRI and they found it now @loribmt

Lori, Volunteer Mentor | @loribmt | May 4 9:14am

In reply to @shaegrace13 "It happened because I had an MRI for back pain and they found something in my..." + (show)

@shaegrace13 Our primary care doctors can often miss blood related disorders. Anemia isn’t ‘nothing’… So I’m glad you were able to find an answer! What will be your treatment options?

shaegrace13 | @shaegrace13 | May 4 12:25pm

As of right now I don’t need any treatment so we wait until my hemoglobin goes below 10 I have been between 11 and 10 for awhile now I will go every 3 months for blood work

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