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
Hello,
After about 3 months, I’d like to give a brief update on my health and my last checkup. Physically, I’m doing very well, I have no limitations whatsoever, and I’d even go so far as to say that if I didn’t know better, I’d believe I was healthy. My anxiety disorder, of course, is a different story, and often puts my physical satisfaction into perspective.
The doctor literally analyzed the results of the last blood test as “great” (an expression you wouldn’t expect from a doctor; however, as a recognized expert, he’ll know what he’s talking about). He currently classifies it as a good partial remission; of course, it could be even better, but the doctor seems to be satisfied overall (with my condition plus the blood work). The doctor said he would be happy if the treatment went this smoothly for all patients.
Individual values since the start of treatment with zanubrutinib (since Christmas 2024) that the doctor highlighted:
Hemoglobin from 9.3 to currently 16.5 g/dL (13.5-18)
Hematocrit from 31.8 to currently 51.1% (40-52)
Leukocytes from 3.4 to currently 7.3 g/L (4-10)
LDH from 209 to currently 139 mg/dL (135-225)
CRP from 20 to currently 0.6 mg/L (<5)
IGM from 8.1 to currently 4 g/L (0.4-2.3)
All other values (including those that were previously partially outside the limit) are fully within the normal range and were not discussed separately.
A quick comment on the IGM level (which should, of course, continue to fall): this level was a little lower in April; however, the doctor explicitly stated that this is no cause for concern at all, because IGM antibodies are the first to react in the serum after an infection, and I currently have a sniffle(I’ve been prone to infections since my student days), which he believes is the cause. He assumes that the IGM level should be lower again at the next check-up (I hope so). This is, of course, a difficult situation for me as an anxiety disorder patient.
Now I have to wait for the next check-up in 3 months and hope that it stays this way and, above all, that the IGM level drops again.