Karen's Story

In my career as Global Projects Director of World Allergy Organization I was fortunate enough to work with the renowned Professor Gunnar Johansson from Uppsala in Sweden, one of the scientists who discovered the antibody underlying many allergic reactions, Immunoglobulin E (IgE).  My life is now dominated by another and altogether much more unwelcome immunoglobulin that we all know so well, abnormal IgM, the discovery of another alumnus of the Uppsala Medical School, Professor Jan Waldenstrom!

 

It was in April 2021 that the fatigue I ascribed to my second Covid vaccination was identified as anaemia.  I was fortunate in a way that many fellow WMers are often not, in that an astute GP ordered further tests, the results of which led to an appointment for the Haematology clinic two weeks later.  ‘Oh’, I thought, ‘they can’t be very busy’….

 

At the rather perplexing appointment the consultant talked about WM and groups of five circulating IgM molecules, and of going into remission after treatment.  ‘Do you mean it’s malignant?’ I asked.  ‘Oh yes’ he replied.  Assuming that any disease could be malignant if not treated, I remained reasonably upbeat.

 

After transfer to the care of the excellent Malignant Haematology team at Nevill Hall Hospital in Abergavenny for my second consultation, I was stunned when the word ‘lymphoma’ was introduced – nobody had told me WM was a type of cancer.  At the third consultation it was revealed that I would be immunosuppressed by the WM. I was too nervous to look at the WMUK web site that my CNS had recommended, because I couldn’t handle any more worrying information. 

 

I wish I could say that I handled the diagnosis well, but I felt shocked, angry, frightened, and isolated.  My turning point was meeting fellow WMer Bob Perry, who called by having just climbed the highest peak in the Brecon Beacons!  After talking with Bob I felt confident to engage with WMUK’s website to learn more about WM.  I remained on active monitoring (watch and wait) until autumn 2022 when my haemoglobin dropped rapidly and after a blood transfusion I started treatment with DRC.  After four cycles of treatment my paraprotein decreased to 3.5, my haemoglobin had increased, and my consultant decided there was more risk to further treatment than potential benefit. I was advised that I would continue to be immunosuppressed for up to a year due to the Rituximab, but happily its positive effects also appear to be continuing as each subsequent blood test has shown further improvement.

 

I am so thankful for the support of Alison McKinney, WMUK’s clinical nurse, especially when I struggled on chemotherapy while being the sole carer for my disabled husband. Alison connected me with Elaine Clinton who runs the WM Carers’ Group, where we discussed the burden that WM places on family life. 

 

My wish for Christmas would be to see more research into the immunosuppression and consequent isolation associated with WM. It would be amazing if we could find a blood test to quantify immunosuppression and so calculate when it would be safe to go out into the world again.

 

I live in a small village in mid-Wales, and to the saying ‘It takes a village to raise a child’ I would add ‘and to care for a cancer patient’.  In thanking my amazingly supportive family, friends and neighbours for their donations to our Big Give Campaign I reflected gratefully that WMUK is a small charity that punches well above its weight for those of us with WM.