How WMUK Helped Me Navigate My LPL Diagnosis
When Liz Came was diagnosed with non-IgM lymphoplasmacytic lymphoma (LPL), she was left with more questions than answers. Here, she shares her journey from a frightening diagnosis to finding reassurance through the WMUK community.
I didn’t have many symptoms; I just felt so breathless when I went out running. At first, I thought it was my asthma worsening, so I was given different inhalers. This went on for a few months until finally a nurse suggested I have a blood test to check for anaemia. That did show anaemia, but I didn’t have low iron instead I had very high protein levels, so they did more tests and then I was referred.
Initially, they suspected myeloma, which was devastating because my Dad died from this. They moved quickly—I even had a bone marrow biopsy the same day I was first seen by a Haematologist because they were considering me for a clinical trial.
But then they told me the real surprise: it wasn’t myeloma, it was lymphoplasmacytic lymphoma (LPL). In fact, my consultant made a point of emphasising that it was LPL and NOT Waldenstrom’s macroglobulinaemia.
Treatment and Generic Support
I started treatment with R-CVP (rituximab, cyclophosphamide, vincristine and prednisolone). I was given Lymphoma Action leaflets and joined their website and Facebook group. It was useful because I found others who were on the same treatment as me.
However, all of the information was generic, and many of the experiences came from people with more aggressive forms of lymphoma or other different types of Non-Hodgkin’s Lymphoma. Nothing addressed the specific experiences of those with LPL.
It was actually someone on the Lymphoma Action Facebook page who suggested I get in touch with WMUK. At first, I wasn’t sure I would be allowed to join the community group as I don’t have WM—but I soon realised the experiences shared there were much closer to mine.
The Importance of Community
95% of people who have LPL actually have WM and I don’t. While I have high IgA protein levels, those with WM have high IgM levels and there are some differences in symptoms—but there are also many similarities.
I was especially concerned about prognosis. My consultant told me I might only have 10–15 years, which was distressing—I was 54 at the time and worried I might not live to see my grandchildren. But on the WMUK group, people often spoke about living much longer, sometimes a normal lifespan. People spoke of dying with WM and not from it.
Specialist Support Brings Clarity
The group helped me discover that there were specialists who understood more about LPL, so I asked for a referral. That’s been reassuring and the group encouraged me and gave me the confidence to request the referral. I also now know I don’t have the MYD88 gene mutation, which is associated with the development of certain types of lymphoma. I wouldn’t have understood any of this without the support network.
More recently, I’ve joined the WMUK group for younger people, which has been very valuable. When I asked them about life expectancy, many said they’d been given more optimistic outlooks than I had—sometimes 30 years or more. That gave me hope, and it also helped me realise how important it is to have information tailored to our subgroup.
I completed my treatment in January 2025. Treatment was difficult because I became neutropenic [a condition where someone has low levels of white blood cells that help fight infection]. Treatment cycles were repeatedly delayed due to this, so it was a long haul, and it felt like being back in Covid times because I couldn’t go out much or socialise with people indoors (due to the neutropenia). But now I’m in remission and I can do normal things again.
Ongoing Support is Important
I’ve found WMUK so helpful, especially the webinars that go into detail about B-cell biology, which really interests me. They don’t dumb things down, but explain in a way I can understand. Now, when I go for blood tests, I’m not worried—instead, I’m interested in the results. The WMUK community feels much closer to what I’m going through.
NOTE:
Lymphoplasmacytic lymphoma occurs when someone has abnormal amounts of a paraprotein in their white blood cells. If those are IgM paraprotein cells, their condition is identified as Waldenstrom’s macroglobulinaemia, if they have larger amounts of other paraproteins (usually IgG) or no proteins at all they’ll be diagnosed with non-IgM LPL.