I was diagnosed with Waldenström’s disease in November 2024, and have been treated with Brukinsa (zanubrutinib) since December 2024.
The initial follow-up examinations were very good, and all blood values are back within the normal range.
The next detailed follow-up examination is scheduled soon.
Before treatment, my spleen was slightly enlarged, but according to the doctors, this is not a problem. Does anyone know if Brukinsa treatment will reduce the size of my spleen, or at least prevent it from getting larger?
Second question: I was diagnosed with irritable bowel syndrome in 2009; could Brukinsa be affecting my bowel?
Hi @stylla75at a great big welcome to our UK support forum.
You say that you have a follow up examination scheduled soon and it sounds to me as if you have got 2 good questions there to ask your medical person.
Someone might be able to share their experiences on here for you, but we are all very complex, unique individuals with our own medical histories and your medical team are best placed to answer your medical questions.
I have noticed that different countries can have different ways of treating patients and access to different medications too.
Be kind to yourself and really look after yourself.
It is good to hear that your blood results are back within normal range on treatment and you are due to have follow up soon.
Sometimes Waldenström macroglobulinaemia (WM) can make the spleen bigger so it is possible that it may reduce in size now that your blood results have improved. However, this will be monitored by your team.
A common side effect of Zanubrutinib is diarrhoea so it can affect your bowel. I would suggest informing your team especially if it is making your irritable bowel syndrome worse. I have enclosed some information about Zanubrutinib from Cancer Research UK which you may find helpful as it discusses side effects in more detail Zanubrutinib