Want your opinons or experiences

[skodaguy]

My megaspleenomegaly has not increased in my opinion but was lately measured at 35cm. Recently started taking fexofenadine for itching which had become a lot worse. This has helped. A recent bone marrow showed neither malignant change nor worsened MF.

My haemoglobin has dropped relatively sharply recently into high single figures which impedes exercise, means I sleep more and was itching more. I know not necessarily all related

My consultant has raised the possibility of splenic radiotherapy to reduce red cell turnover. I am reluctant as worried about the increased risk of malignant change and also if it is too effective having to take daily antibiotics with the risk of developing antibiotic resistance . Also don,t like the idea of having penicillin in the house when my wife gets anaphylaxis from it

Anyone here experienced splenic radiotherapy? If so what has been your experience of it?

All comments whether personal or factual welcomed. Have been stable for years but starting to think I am at the top of the slippery slope.

[Paul123456]

Is your itching worse after shower/bath?

The consensus on one forum I follow is that Beta Alanine (can buy off Amazon) is miraculous for aqua pruritus.

You are seeing Claire Harrison? She is the best.

Have you had a Myeloid Panel Test?

And are you considering SCT at some point?

The annual Ash Conference starts soon, I think 8th December. This promises some exciting new therapy options, albeit early stage. Worth following closely since there is a lot in the Trials pipeline

Best Paul

[skodaguy in reply to Paul123456]

Don't generally itch when I shower unless it is in the evening. Just had a BMB which didn't show much new. No chance I'll ever consider SCT

[jane13]

Hi, sorry I have not had this treatment but will be very interested to hear of any results. I have MF, spleen enormous, Hb down to 80, just increased the Ruxo I take to try and keep my spleen down a bit but probably this will make my Hb worse....

I do so wish that there was some written guidance around about our options......c'mon Mazd!!!