Hello there!
I was diagnosed with CML around six weeks ago and when doing a scan they found that my spleen was 18 cm long.I forgot to ask the doctor how long it takes for it to shrink back and for how long I should be feeling pain. So I'm wondering if any of you know? I have this constant throbbing, sometimes pinching pain under and just below my left rib cage, that is the spleen right?
Hi Sandra, welcome to the club which none of us applied to join. I hope you find the site useful. I assume you have been put on one of the TKI drugs (e.g. imatinib, dastanib, nolitinib) and possibly allopurinol. Allopurinol will help your body break down the excess white cells, which is what is causing the swollen spleen. For most people the spleen returns to normal in a matter of weeks, and after 6 weeks I think most people have felt some improvement. Can you tell us which drug(s) you are on, and your white blood count at diagnosis? Your location of your spleen is correct by the way. If you are comfortable telling us it might be useful to say where you are seeing your consultant.
I agree with Alastair - spleens, even really big ones, tend to revert to a much more normal size quick quickly.
I remember mine was similarly large to yours and after just a couple of weeks of treatment it felt much better and after a month or so was close to normal. It made things much more comfortable, including things like gastric reflux that I didn't realise it was causing by pressing on my stomach.
You'll feel much better as it starts to reduce.
David
Hi there,
I had an “enourmous” Spleen 20cm below the intercostal margin. After commencing treatment it returned to normal size after about 6 weeks. I was started on hydroxycarbamide for 3 weeks before commencing Nilotinib. And like David mentioned was the reason for my unusual reflux and I’d never put the two together.
Sorry to hear of your diagnosis it’s something none of us wanted. But you’ll find comfort in knowing 90% of those diagnosed will live full normal lives. And this is a great place to share your concerns.
All the best with your treatment
Alex
Hi Sandra, probably showing my ignorance but up to being diagnosed in January 2015 I and the majority of people I know didn’t even know where the spleen was, all I remember was a constant ache in the now known spleen area, a distant memory now, and thanks to groups like Cml support, after 4years I, like you know, your not alone, with questions that help to put your mind at rest.
Hi! Thank you everyone for your replies! I'm so sorry I haven't replied for so long. I did check the box for notifications so when I didn't get any I figured no one had answered my question.
I was a t the doctors a few weeks ago and he said my spleen had shrunk back. It did ache for another week or so but I haven't felt it now for a good while!
I don't get notifications either. Maybe that feature isn't working?
Good to hear that your spleen isn't bothering you any longer.
