So….my suspicions following my post in April were correct as after self diagnosing an enlarged spleen this has been confirmed and after 4 years of active monitoring I have commenced treatment. Prescribed Zanubrutinib and thankfully after 5 weeks no noticeable side effects, Consultant has however warned of possibly (but unlikely!) spontaneous rupture of spleen which is causing me some understandable anxiety! Three trips away have been cancelled and I feel my life is on hold. I understand it can take up to 6 months to reduce in size so my follow up consult at 6 weeks will merely assess bloods and hopefully give a more defined prognosis. I thought I was okay with treatment commencing as I knew this was inevitable but the enlarged spleen and associated anxiety together with feeling trapped on the island (I live in Jersey but my partner lives abroad) seem to have become overwhelming issues when I know in the grand scheme of things they are not. In six months time hopefully I will look back on this post with the Zanubrutinib continuing to do its job with bloods and spleen under control and many trips planned! Until then I will need to be patient but it’s hard.
2 Likes
Hi @jsyjohn and welcome back to the forum.
Your worries completely understandable.
My diagnosis was Myelofibrosis and it probably took about 9 months before I saw spleen size starting to reduce.
Each individual and each cancer different as you will know.
Following advice and trusting your Haematology Team is vital in my experience
I sympathise about having to cancel things and feeling life on hold.
Wife and I had a load of trips planned for our 60th birthdays all of which had to be cancelled.
Take care and fingers crossed for a positive response to your treatment
1 Like