Hi to everyone, I have had mf, almost 2 years. and I have never spoken to anyone with mf, I hope to hear others in this position, thanks bye

[bernie62]

[eire]

Hi Bernie62,

I've had MF for nearly 5 years. I've been on a clinical trial now for 15 months and am doing OK. I've got to meet people with the same condition on my visits to the hospital and can tell you that every-one is so very different with this disease. Anything you want to ask please do. I hope you're coping well.

[bernie62 in reply to eire]

Hi eire,

I live Halifax, west yorks, its just my luck, but i dont meet anybody with m.f. when I go to Hospital, as I am the only person with it. I also go to st James, in leeds, every 6 months, And I asked him, the doctor, all he said was I will find it hard, as it is so rare. But he did tell me about this site, so here I am.

Hope you are well.

[JediReject]

Hi bernie62 - sorry to hear about your MF, like eire says the condition and treatment for it, if any, affects everyone in different ways though we seem to have a number of the same symptoms. I am 52 and have had MF for 7 yrs and thus far been on Hydroxycarbamide which I cope well with. There are a number of peops on the forum with MF at varying stages and a couple have opted for bone marrow transplant at an early stage. I decided to plough on down the drug route for now as things are moving on in 'our world' as each year passes. There is at least one new drug on the scene and a couple in trials which is encouraging. So take heart. I hope your symptoms aren't too troublesome. Cheers

[beetle]

Hi Bernie62. Welcome to this forum. We are a friendly bunch and are all at varying stages of ET/PV/MF. These diseases seam to affect each of us differently but you will find some common threads if you read through previous posts. I evolved into MF after 17+ years of ET. I spent most of that time taking Hydroxycarbamide but have recently been taking Ruxolitinib which has not proven to be as successful as I had hoped. As Jedi says there is much progress happening in the field of MPN and we all live in hope that the 'holy grail' is just around the corner. Feel free to ask any questions on here about anything that is bothering you as there is usually someone here with experience to shed some light on things. Nobody claims to have all the answers though! You have not mentioned how MF is affecting you. With me the enemy number 1 is fatigue but I have had some other complications along my journey. Hope you are coping well and we will see you again here. Best wishes

[darcey in reply to beetle]

Great reply everyone gives so much support what a super bunch of people u all are.

I have also had ET for 10 years on hydrox . Eight weeks ago been told it's now MF been a shock very tired but at the moment I have calmed down & have seemed to be ok at the moment. What might happen does any one know??

[beetle in reply to darcey]

Hi Darcey, Your situation is still very clear in my mind. It is supposed to be only a small percentage of ET sufferers who progress to MF and, as is human nature, I didn't believe it would happen to me. It is very scary at first but I have now got used to the idea and am just dealing with one day at a time. Fear is defined as 'False Expectation Appearing Real' so I try my best not to go there - not always easy of course. I am blessed with a son who is one of the most positive people on the planet so I try and learn from him. Hope you come to terms very soon. Kind regards

[Aime]

Hi Bernie62, Sorry to hear you have been diagnosed with MF but you have come to the right place to get support. I have PV, not MF as yet, so cannot help on that side of things but would like to say I am thinking of you and wishing you the very best. The other MF sufferers will understand better what you are going through and as you can see already are helping/supporting. All the best Aime

[MichaelS]

Hello Bernie62 et al, I have MF which 'translated' from PVR, which I was diagnosed with in 1983. It became apparent and tests confirmed it that I had changed to MF about 5 years ago. I am thankful that all along I have been well looked after and had very few problems other than itchy skin, headaches etc in the early days with PV. I have been on Hydroxy all the time, but in early November they tried me on Ruxolitinib (Jakavi) because of my swollen spleen, which has often been swollen over the years. Unfortunatley the dose they gave me was too strong and my platelets went down to 66 after 2 weeks, from 255, and then my Hb went down to 93 or 9.3 in the older measurement. This made me very tired so I was given one unit of Hb blood and felt warmer and a little more energised straight away. This was just before a skiing holiday over the week of Christmas. They stopped the medication and for the first time in over 30 years I am not on any drugs for the blood! On Wednesday this week, 8th January, I think I will be put on a lesser dose, probably 10 or 15mg of Jakavi rather than the 20mg I started with. Apart from swollen spleen, which as I wrote before I have had over the years with PVR, I seem to be developing aching ankles and joints; which I think is something that many people mention. I hope your progress with MF is as easy as mine and wish you all well for 2014.

[Twinkly in reply to MichaelS]

Hello MichaelS,did we meet at the forum at st Thomases in London I started on ruxolitinib 4 months ago,2 morning 2 evening ,good healthy diet.lots of green food,and juice....now I take 5 a day and I'm really well.I think the treatment is complimented with the diet ,

[MichaelS in reply to Twinkly]

I was at the London Patient Day Forum and I was on duty on the Buddy table at morning tea time. I also asked some questions in the MF meeting, but not at St. Thomases

[Twinkly in reply to MichaelS]

Well we were at both and I do recognise you from your tiny picture ,my kindest regards for you good health ,2014 .twinkly ..

[MichaelS in reply to Twinkly]

I wish you well too. Maybe we will meet again if they do another MPD Day. I shall be with my Haematologist tomorrow and probably restart the Jakavi. I will be having a hernia operation in the not too distant future, so this may confuse things. Hey ho

[bernie62 in reply to MichaelS]

hi michaels,

so you have had mf five years. I must say you all seem to know much more, about your conditions, then I do, about mine. my haemo, just says,

your blood is good, and your spleen is a bit smaller, at one time she used to tell me what my spleen measured ,it was between 130mm to150mm,

from the edge of my ribs, measured with a tape measure, I will have to ask for more info, next time.