Going well so far with MF on Ruxolitinib

[Otterfield]

When I was diagnosed with post ET Myelofibrosis in August, I was terrified and extremely grateful for the support on this forum. I thought I would just update you and let you know that Ruxolitinib appears to be working well for me. My counts are still not great but are, to quote my haematology nurse, "going in the right direction." My energy levels have improved hugely and I'm increasing the distance I can walk day by day.

Thank you to all those who have supported me when I have been scared and low. I know that there will be downs as well as ups in the future but at the moment things look positive. I'll take that.

Best wishes to you all, Jennie

[Cja1956]

Glad to hear things are going well for you, Jennie.

[Mazcd Partner MPNVoice]

Hi Jennie, really so pleased to hear that things are going well and in the right direction for you, thank you for letting us all know, it will help other people. Take care and lots of love, Maz x

[beetle]

Glad to hear things are going well. I too have post ET MF so I know where you are coming from. If it gives you hope I am now 9 years since progressing and 8 years on Ruxolitinib. Don’t listen to the statistics. We are all individuals. Stay safe and best wishes, Jan

[Dovme]

Good news and best wishes and thanks l really appreciate all your contributions and positive approach to things

[psychedelia61]

I was so glad to read this post this morning. I'm waiting for the results from a BMB four weeks ago and the results from the first test does look like I'm on the way from PV to MF. I'm already suffering from fatigue and no energy to do anything, which is so different from four months ago when everything seemed so normal.

Thankyou so much for all your valuable information, it's a huge comfort.

[mhos61]

Pleased to hear this Jennie. Early days, but you must be delighted.

[IrishHiker]

What great news. Happy to hear especially about your increased energy ❤️

[tracey13]

Glad to hear you feeling better on ruxolitanib.

It's been amazing for my husband he's been on it 1yr 9mths we pray it continues to work well for him

He gets blood tests every 3 months and he's been having telephone appointment with his consultant blood have been really good and all stable.

My husband recently had to have emergency surgery and had to stop ruxolitanib for two days as he had sepsis too.

All is well he's had two more blood tests and everything is good.

I pray he never needs a stem cell transplant and medication can control his post PV MF.

Tracey

[Otterfield in reply to tracey13]

Thank you for sharing that. Sepsis must have been very frightening and I'm pleased to hear your husband is back on track.

I am also nervous about the prospect of a stem cell transplant - on the one hand it's a cure, but on the other it's so risky.

[tracey13 in reply to Otterfield]

That's exactly our thoughts with the transplant it's so risky.

My husband has had all the matching done he's got 9 unrelated donors on the register which is amazing if he ever needs a transplant.

To be honest he.would tell you himself he doesn't feel like he has a blood cancer and he feels very well.

I think covid is getting to him more than anything else. We all existing at the minute and not living.

Hopefully one day there will be a cure! 🙏