Enlarged Spleen

[flog]

diagnosed with post ET/MF 3 years ago, watch and wait, now spleen measures 15.8. Any advice please.

[socrates_8]

Hey Flog...

Hmmm...? What is it in particular you were wanting to know Flog?

My name is Steve, and I am also Post ET / MF diagnosed about 4 years ago...

Steve

[flog in reply to socrates_8]

Thank you for replying Steve, from the replies I have had I will be contacting my haematology department to ask for advice.

[Otterfield]

My advice is to talk to your haematologist about this. I'm surprised you are on watch and wait with MF, there are drugs that can reduce your spleen and make a big difference to MF.

[flog in reply to Otterfield]

Thank you for replying, I will as suggested contact my haematology department for advice, as I did notice most people who post are on medication.

[JediReject]

Hi Flog, not much you can really do unless it's causing you real discomfort. Though your spleen is oversize your Haematologist might not consider it too much of an issue just yet. And if your bloods are in range and ou gave no other symptoms then our doing well on watch and wait. However if like my past experience your Haematologist isn't an MPN specialist it may be time you found one or at least discussed whether you should be on HU or Ruxolitinib. Better though to keep off meds as long as you can methinks.

Realistically I think the best choice to halt your spleen growth or possibly shrink it is the Ruxolitinib. But it was only prescribed to MF intermediate 1 or 2 last I knew. So maybe too soon for you.

If bloating is a problem try smaller meals more often than say a large main meal. Oh and buy a size bigger in shirts as I used to pop my buttons 😃.

Btw my spleen was about 21cms just past my naval.

Regards - Chris

[flog in reply to JediReject]

Thank you Chris, I will be seeking advice from my haematology department about when I should start medication.

[JediReject in reply to flog]

Yes I think you ought. Im no expert of course but whilst it seems good news to be on watch and wait depending on your bloods it could be time to consider whether starting on a drug will help. Good Luck going forward . .and don't be afraid to ask for a second opinion if you aren't happy with the advice you get or lack of it. . ,

[westlieght in reply to JediReject]

Hi Steve

Am 16 years ET/MF been along a journey bone marrow had 4 to diagnose the change of et to MF now mostly on watch and wait on asprin only and transfusion every 4-6monthly this keeps me going still working part time and glad it’s only part time !my battery’s get low need sleep fatigue !

No question of spleen enlargement as yet and hope this may continue my age is 64 I play golf when I can and just keep going when home I rest-sleep !

No wish to go on any more medication yet!

Best wishes margaret