Hi @Willow and @Alison1964
How are you both doing ?
Willow did you make enquiries about Monolitinib as Rux is making you anaemic?
Alison have you managed to stay off any further transfusions.
I had one yesterday to last me 3 weeks as my HB was 75. I see my consultant next Wednesday to see what happens going forward. I have heard from a nurse that I’ll soon have to have iron removed as my body will store too much. Seems crazy to give you transfusions then have to remove some of it.
Have any of you had that ? I have had 3 transfusions so far. Not sure of the Rux is suitable for me as I dont want to be reliant on transfusions going forward. Maybe it will settle down. It’s only 13 weeks. I’m a bit of an impatient person 
so expect to see results straight away ! I feel fine and have plenty of energy. Hope you have a great Christmas x
Hi @Nicki535 join the ‘impatient patient Clan’
Feeling feeling fine and having plenty of energy sounds good to me.
Perhaps just live life, although I know you have questions around your transfusions
Have a lovely Christmas Erica and a happy healthy New Year.
From #very impatient Nicki 
Hello @Nicki535. Thank you for asking after me. Interestingly I saw my haematologist this week and we had a chat about momelotinib. She might be able to access it for me on compassionate grounds because it isn’t fully available yet but the Ruxolitinib is making my anaemia worse. Yes, there is the problem of iron overload when we have lots of blood transfusions. Apparently the body doesn’t deal well with excess iron and it can start to damage the vital organs. I tried tablets to remove the excess iron a few years ago but I had a bad reaction to them and had to stop. My iron levels are extremely high due to the blood transfusions but maybe if I could switch to momelotinib I might not need the transfusions so often? My haematologist is also checking to see if I have the HFE gene (5% of us do) because that would explain why my body isn’t dealing well with the excess iron. So it’s ‘watch this space.’ I will update you when I know more. I am off to have another transfusion now. Wishing you all the best, Willow x
Hi Nicki
I haven’t had a transfusion since the beginning of November but I’m starting to feel overdue as I’m short of breath. I am going to book a blood test after Xmas.I had another bone marrow biopsy on Monday which was an unexpected shock.The hospital working me up for stem cell transplant thinks my myelofibrosis may have morphed into Acute myeloid leukaemia (AML) although I was initially told I was at low risk of that.Apparently they have now found something worrying about my blood and asked my haematologist to redo the bone marrow.It was a dry tap in September where they couldn’t get any fluid whereas post Rux they got fluid and can do a better sample.Im not sure how long results take.Im guessing if it is Acute myeloid leukaemia (AML) they will call me back rather than wait for my next appointment which is 29th Jan.Id already decided to move from London to Newcastle to be nearer family when I have my transplant so I’m currently super stressed anyway about selling my flat and moving.I suspect it’s not going to be the most relaxing of christmasses
Alison
Great you may be able to get Momolitinib on compassionate grounds but of course we don’t know if it’s much better than Ruxolitinib although it targets anaemia better
Have you had blood transfusions all the way along since taking Ruxolitinib or was that just at the beginning and recently. I feel that once you start these medications it brings on a whole load more problems than we had before taking the meds. Seems a vicious circle. Keep me posted about any developments going forward. Happy Christmas
Oh Alison it sounds like you are busy with everything at the moment. Good idea to move closer to your family in Newcastle. I love Newcastle, my parents both came from there. Happy childhood memories.
So if it has changed to Acute myeloid leukaemia (AML) is that worse or better than Myelofibrois. I don’t know much about Acute myeloid leukaemia (AML). Is that what you have @Erica ?
Can it be controlled better and can you still have a stem cell transplant for that ?
Are you off to Newcastle for Christmas ? Whatever you do I hope you have a great time
Oh @Alison1964 I found moving so stressful, the end result might be what we want but the time in between I hated.
Let’s hope your medical transfer will go smoothly.
Really look after and be very kind to yourself and please do let us know how you get on.
Hi @Nicki535 no, I have Chronic lymphocytic leukaemia (CLL) but I have found that most of us share similar fears, thoughts, feelings and practicalities.
I agree it’s all under the same umbrella really x
Hello @Nicki535. The main reasons I started taking the Ruxolitinib is because my spleen was enlarging and the bone pain was getting awful and hard to control even with painkillers. I am pleased to say that the Ruxolitinib has helped with both these issues although bone pain still affects me and seems to get worse when my Hb level drops. Yes, I have needed regular transfusions ever since starting Ruxolitinib. Obviously if I do get the chance to switch to Momelotinib then I would need to know it will help my bone pain and that I would have the option to go back to Ruxolitinib if necessary. It is complicated! Warm wishes Willow x
Hi Willow
I can see why it was recommended for you as you had bone pain which is something so far I have never fortunately had. My only symptom was enlarged spleen and HB levels dropped from around mid 90’s which I have been for quite a few years to 80’s and 70’s. So being anaemic going on Ruxolitinib has made me even more anaemic now relying on blood transfusions. It has made my spleen smaller which is good but it never bothered me being enlarged so I feel worse off than I was before.
Hey ho I’ll see what my consultant says after Christmas. Have a fab Christmas anyway and let’s hope next year is a healthy ish one for us all x
Hi David
How are you doing on monolitinib ?
Hope it’s still working well I started on Ruxolitinib at the end of September and it has considerably reduced my spleen size. I was on 20mg which has now been dropped to 15mg.
My only problem is has made me become more anaemic than I was initially. My consultant says I need to give it 6-12 months to see if it settles. I’m having transfusions every 3-4 weeks as well. Does the monolitinib keep the spleen small and has it raised your HB level ?
Kind regards
Nicki
Thanks for the update @Nicki535
Please do keep posting and look after and be very kind to yourself.
@Alison1964
Hi Alison
How are you doing ? Have you moved yet ?
Hope things are okay as know you had some test results which needed looking at in December.
Regards
Nicki
Hi Nicki
I had another bone marrow biopsy which showed the Myelofibrosis hadn’t progressed to leukaemia so panic over.The hospital has found me a 10/10 bone marrow match donor so it’s all systems go for transplant.I moved to Newcastle on Tyne last week as it’s more affordable than London now I’m not working and I have family here.I was having a big panic over how my healthcare would transfer but it’s gone really smoothly.The haematologists just got in direct contact with the Freeman hospital up here where transplants are done.
I’m feeling much better now the stress of the move is all over.How are you now?You were getting very anaemia on Rux but they seemed to have you on a really high dose compared to my measles 10mg a day.
Regards
Alison
Hi Alison
Glad it’s not progressed. Must be a huge relief and great you have made the move to Newcastle.
Wow a 10/10 match that’s amazing. They can’t find a close match for me at the moment.
I’m getting on okay with Rux and have dropped the dosage from 20mg twice daily now to 10mg. I’m sure a transfusion this week. They tend to be every 3-4 weeks. I’ve also started last week on epo injections once a week which is supposed to help stimulate the bone marrow to produce more red cells. In the hope I’ll rely less on transfusions. But otherwise I feel okay despite the stress of emptying my parents house and lifting furniture around the place !
Then I decided to re carpet my living room so moving more furniture around today ready for fitting. 
glutton for punishment ha
Take care and let us know how things go
Kind regards
Nicki
Monolitinib continues to work well for me. I have not needed a transfusion for nearly a year and Hb is 100+!. It seems to be controlling spleen size and bone pain well. I am feeling like one of the lucky ones for now. The drug has of course now been NICE approved. Good luck
@davidmynors
Fabulous news. Great to hear something positive about Monolitinib. My consultant is lining me up for it in the next month or two well when he can get it now that he has been approved. I’m still on Ruxolitinib and have been for 6 months now and although it has reduced spleen size it hasn’t controlled my anaemia so I hover about the 80 -85 mark but having transfusions every 4 weeks or so.
That’s really positive must feel like you can get on with your life. Lovely to hear from you
Nicola
Great news @davidmynors and good to hear from you again.
Look after yourself