I have myelofibrosis and am on 20mgs if Ruxolitinib twice daily. However, my spleen has grown to enormous proportions and the Ruxolitini

[billybrock]

My Haematologist is putting me on Cytidine. What is the frequency of taking this?

[Mazcd Partner MPNVoice]

hi Billybrock, it would be best to discuss this with your haematologist. Best wishes, Maz

[dancingelephant]

Hi Billybrock - I too am taking Rux but 15mg twice daily. I often feel that my spleen is expanding , but have'nt heard Cytidine. When ... you find out from your heamo or other can you post the outcome?

Best wishes,

Bonnie

[Leighcox85]

Hiya Hun I have mylefibrosis iam on 25 mg rux twice a day I have an enormous spleen to but low platelets so I couldn’t take the drug you mentioned and iam looking at options at the moment with my team if your worried or want any information about treatment options you can discuss this with your team they know you and will be able tell the ins and outs try not worry and speak to your cns about your worries and questions they will be able give you any information you need sorry I couldn’t be of more help but good luck

[billybrock in reply to Leighcox85]

Hi LeighThe drug is azacitidine and not what I called it before.

I don’t really have any concerns. It’s just that I m going on holiday for a week at end of month, and was wondering if I should start treatment before or after. I have a phone consultation with my local team and will ask them.

Keep well!

Billybrock

[Leighcox85 in reply to billybrock]

I know exactly what you mean the last thing you want is to feel awful while your away and adjusting but definitely ask them i hope it works for you I really do I know when i first started rux my spleen shrunk for awhile and it was wonderful so I hope you get the same

[billybrock in reply to Leighcox85]

Thanks.keep well

[JediReject]

Hi billybrock, , just curious if the azacitidine being taken in tandem with your Ruxolitinib or replacing it. . Whichever I hope it works to at least halt your spleen growth or hopefully reduce it and I guess give you some much needed relief in your abdominal area. . Chris

[billybrock in reply to JediReject]

Hi ChrisAt this stage I do not know. I am under both my local hospital and also the specialist Guy Hospital team. The Guys harmony said he will ask my local team to start with the azacitidine. He didn’t say whether it replaces Ruxolitinib of is taken in tandem.

I have a phone consultation with my local team on Monday, and I’ll find out more. I’ll report the results on here.

Billy

[JediReject in reply to billybrock]

OK Thanks for your reply there, , I believe there have been some encouraging results from a twinning approach which is what I was very keen to experiment with when on Ruxolitinib which didn't have any measurable effect on shrinking my spleen. However my guy at the time wasn't at all proactive in trying a different tack so I missed out there.

Good Luck going forward!