More spleen chat

[Margo18]

Hi

I have MF diagnosed in February I am on Jakavi 20 twice daily started at the end of March . Since before I was diagnosed with MF I have had spleen discomfort. A scan in the spring showed the spleen to be 18 cm. I had hoped that the Jakavi would have reduced the spleen by now but I still have discomfort and occasional spasms of pain

I am just wondering if anyone else on Jakavi still has spleen discomfort and if this is normal after 7 months? I did wonder if some of the pain spasms are wind related 😩

Sorry to ask so many questions there seems to be no definite answer to all this.

Margo

[lizzziep]

I haven’t had pain (so far) or spasms, just a feeling of pressure against my lower ribs. Can’t give you any advice as on Anagrelide. Hope all goes well for you.

[ConniesDad]

Hi Margo, You seem to have come to the answer yourself here;’ no definitive answers for this’

When I moved on to Jakafi my spleen was at 22cm and almost one year later it had only reduced to 19cm. I was quite seriously anaemic with grade 3 bone marrow scarring and therefore the spleen didn’t shrink much because it was so busy trying to make me some red blood cells.

Thankfully the reduction in spleen size was enough to let me qualify for the stem cell transplant in June this year. However even after the transplant the spleen has only reduced a couple more cm and I still get the ache in the area of my spleen even now. I’m currently waiting for another ultrasound to check if it’s still reducing slowly.

Hope you get some answers soon.

Garry

[Margo18 in reply to ConniesDad]

Hi Garry thanks for replying to me. Firstly congratulations on your transplant I hope you are doing well. I was refused one as am 71 I do think it is the spleen working overtime so there is not much more to be done but keep fingers crossed. Take care. Margo

[Leighcox85]

Hiya Hun I to have mf my spleen is 26cm I get a lot of pain and twinges it can take some time for rux to work but it does usually bring it down I went to about 10 cm after a year but your team will monitor how well your doing are any of the other symptoms improving

[Margo18 in reply to Leighcox85]

Aw. Thanks for your encouraging reply. Will just have to keep going and hope for the best. Hope you are ok too M