Hi newly diagnosed husband with MF following six years with PV.

[tissi]

Terrified of what I read on the internet. Is there any hope.

[tombs]

Hi Tissi, I was diagnosed with Primary MF in early 2009. Once the blood transfusions were completed, I was started on Alpha-Interferon, which has controlled the condition to date. I am fortunate that I do not suffer the famous side-effects, as I know many people cannot tolerate them. Other than the well-known fatigue, I am able to carry on "as normal". There are so many differing stories on the internet. I prefer to place my trust in my Hemo and the support of people on this board. Please don't give up - we have all been in a dark place, and it can be difficult at times. You do need someone close you can discuss things with. It does help. Good luck to you both.

[tissi in reply to tombs]

Please read my reply to MFBMT2011. Not sure if one reply would be seen by all. Trying to be positive but its hard. Thank you

[JediReject]

Hi tissi. .Sorry to hear your hubby has gone on to develop MF. Cant tell you not to worry obviously, however MF has variables and as its early days you need to get more info from hosp tests and your hubbys Hem rather than perhaps naturally set your mind racing ahead with worst case scenario which I did when diagnosed 6yr back. I was looking at sites that were 20 yrs old when little was known about MPNs which was a mistake. Even using reputable up to date sites I accept it doesnt make great bedtime reading when you're affected by it.

However the condition can be managed in most cases and there is the possibility of the new drug Jakafi being made available in the UK maybe within the year if NICE will sanction its use. Check out an article in Pharmatimes.com - google pharmatimes.com myelofibrosis and you will see it listed as 'first drug for rare blood cancer gets uk launch'.

Anyway I know its a very worrying and stressful time for you both but please let us know how you get on. cheerz for now.

[tissi in reply to JediReject]

Please read my answer to MFBMT2011. Thank you for your support. Trying to be positive.

[MFBMT2011]

I was diagnosed with primary MF in 2010 and frightened myself silly reading the internet so I understand what you have been through. You will pick up more from this site and from patients/specialists you meet. My first Hem was quite negative so I went for a second opinion and was fortunate to be referrred to an excellent specialist. The guys above are right, drugs that manage the symptoms exist and are being developed. MF moves at varying speeds and can be managed over long periods but also can change quite quickly. however, the only potentially curative option is a Bone Marrow Transplant, suitable for some depending on a number of factors. I was suitable and am now 18 months post transplant. I don't know where you are based, but in the UK another good source of information is the MPDVoice evenings that take place periodically with one in Cardiff in October and then another in central London in November. You get more info' and the chance to meet specialists and other patients with PV, ET and MF.

Since being diagnosed I have met a lot of people on the Internet with MF and keep contact with a number in the USA, these include people that have had MF for a long time and a BMT transplant survivor who recent.y celebrated 20 years.

So don't despair, start learning about the disease and what you can do about it.

Good luck.

Chris

[tissi]

Thank you so much for the positive reply. I am looking too far forward, just that at the appointment last week a BMT was mentioned already but we have to go back to hospital in two weeks time. I am trying to be positive but its hard.

[babbittybumble]

Hello tissi, Our son has Primary Myelofibrosis and is doing really well. We quickly realised that many of the websites give out untrue ,very alarming information.. MPD Voice and Dr Claire Harrison in Guys Hospital are tremendous ,please visit their website., and try and get to one of the forums if this is possible.Lots of love.

[tissi in reply to babbittybumble]

Thank you. How do I access Dr Harrison's website?

[MFBMT2011 in reply to tissi]

Google MPDVoice and the results will give you the site. Tissi, i know people like to remain annonymous but it sometimes helps if we have a clue what part of the world or indeed UK you are in as people might be under specialists in your area. Claire Harrison was the excellent specialist to whom I was referred for a second opinion, a brilliant doctor, a thoroughly nice person and one of the key drivers behind MPDVoice.

[MichaelS]

Hello to Tissi et al, I was diagnosed with PV in 1983, when I was 37 and 3 to 4 years ago it 'progressed' to MF. I was a quite worried and it seemed that the doctors were because they started a process to change me from Hydroxycarbamide to Thalidamide with a steroid mix. However my blood seems to have continued in much the same way and I am still on varying amounts of Hydroxy. My GP put my mind to rest when I had a chat with her about MF, as she nearly became a Haematologist and so has a great interest in it. She said that it can be very slow to develop and that I shall probably not be affected by it anymore than I have been by the PV. I hope this helps.

Above all try to keep positive and do some exercise like walking whenever you can. I am sure it helps.

[tissi]

Thank you. My husband always had high red count with PV till october 2011 when he had a major stomach bleed, after tests he was told it was due to the aspirin he was on. He remained anemic after this and never made up the red count again. It seems that the stomach bleed changed his disease course and now after bone marrow biopsy diagnosed with MF. We see the consultant again next week. They had stopped his hydroxy to see if his red count improved but it did not, so he is not presently on any drugs and cannot go back on aspirin. So we are yet to hear what the next plan is. We are feeling a bit better about things now and trying to be positive.