Anyone have Waldenstrom's AND Multiple Myeloma?

Posted by glueski @glueski, May 22 7:45am

I am waiting to review my bone marrow biopsy to see if I have both!
Anyone else with a similar diagnosis ?

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tracypage | @tracypage | May 23 7:39am

Yes, I have cells for both and the MYD88 mutation so they are not treating either until they are sure which way I am going. The treatments are very different. I have symptoms of WM but more MM cells than WM.

glueski | @glueski | Jun 28 7:13am

Original diagnosis was Waldenstroms.Received a second opinion that added Multiple Myeloma

bloodguy | @bloodguy | Jun 29 7:08am

In reply to @glueski "Original diagnosis was Waldenstroms.Received a second opinion that added Multiple Myeloma" + (show)

I have WM only at present. Mayo expert, Parshant Kapoor,MD recently gave a presentation at IWMF convention on multiple medicines in the pipeline and/or available for treatment of WM and I would think the same is true for MM. It is available on UTube and encouraging.

mackenzies | @mackenzies | Jun 29 9:06am

In reply to @glueski "Original diagnosis was Waldenstroms.Received a second opinion that added Multiple Myeloma" + (show)

From BMB in 2024 told I had Smoldering Multiple Myeloma and Indolent B-cell lymphoma with Plasmacytic differentiation(LPL vs MZL). I do have the MYD88 L265p mutation. Repeat BMB in May 2026 & now they say LPL vs MZL(less likely) and no Smoldering MM. I am bi-clonal and my IgG has always been higher than my IgM.

glueski | @glueski | Aug 11 2:30pm

I was diagnosed in 2011 with Waldenstroms and it recurred in 2021. I received a second opinion in June of this year because of high IGG levels.........Multiple Myeloma. Yikes ! Now doing zanubrutanib and 2/3's of DRD treatment (holding off on the Revlimid). Little change in blood counts.

coleypd | @coleypd | Aug 23 7:36am

In reply to @glueski "I was diagnosed in 2011 with Waldenstroms and it recurred in 2021. I received a second..." + (show)

My husband has had WM since 2021 & he also has lymphoma on his lung. He has been taken Bruinska for about 2 /2 because he could not tolerate the other chemo pills. His IGm is like 33 which also is not good. Praise God for what he has done. He is declining and hurting on that lung but thankfully he is on Pallative Care for the pain.

jonyb | @jonyb | Aug 24 6:34am

In reply to @glueski "I was diagnosed in 2011 with Waldenstroms and it recurred in 2021. I received a second..." + (show)

Hi my wife has LPL IgG and they thought it was myeloma related but I noticed her blood calcium was normal so asked the question. Are they certain yours is now multiple myeloma and WM? Did the new marrow show the typical myeloma plasma cell phenotype, rather than the lymphoplasmacytic cells seen in LPL? I wondered particularly about CD5/CD23 and the other B-cell markers in your new marrow test as these being + can be an indication of myeloma. It is also possible to have biclonal LPL, including IgM and IgG paraproteins, so with your previous Waldenström's diagnosis I would be interested in how they distinguished a second myeloma from the LPL producing two paraproteins.

I hope it works out for you.

All the best

Jon

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