Myelofibrosis

[maxineathersych]

My fiance is newly diagnosed with early myelofibrosis. He asked the doctor if it would affect his life span and the doctor said no. My understanding is that this is a progressive illness and having lost my dad to mf I know it's a serious condition. I'm really confused right now.

[Mazcd Partner MPNVoice]

Hello Maxineathersych, I can understand that you are feeling confused about this, I can send you one of our information booklets on MF if that would help, email me at [e-mail] with your postal address. The information in our booklet is: your individual situation and health history, as well as the ways you respond to to treatment can all affect your prognosis (the predicted outcome of the disease). MF affects people differently, and an individual's prognosis may vary depending on a number of factors, such as age, blood count and symptoms. Life expectancy varies from person to person, your haematologist will be able to provide you with an accurate picture for your individual situation. Your fiance's doctor will have taken all this into account, including his overall general health when giving the advice to him. If you attend the appointments with your fiance it may be worthwhile explaining your concerns to the haematologist and the reason for them. Best wishes, Maz

[JediReject]

Hi Maxineathersych, hope thats right , , , well the first thing is not to panic too much there, hard not too I know but as Maz rightly points up MF is a very variable condition and can be a very slow burner indeed. . So your fiance is likely to do very well for many years to come with or without drug support.

Having said that I have to say I am at odds with your Doc as it is in my opinion a potential life limiting condition which as you say is progressive, I can say that because I have had it ten years and on the 4th Sept age 54 had a Stem Cell transplant because my drug options were exhausted. Again though I know people who have had it well over 20yrs with no drug support to begin with and after a few years were put on Hydroxycarbamide which managed their blood counts etc from then on. .

The latest drug therapy is specifically designed for MF and others are in development so there's plenty coming along for the future, , which gives us all hope and encouragement. .

My advice is to try and get on with your lives and try not to let this diagnosis become all consuming. . I did for a number of years and now regret it with hindsight.

If you want to ask me anything please message me as it's a difficult time emotionally for you both and as many of us have found some Docs , Consultants aren't too clued up on MPNs and we have benefited greatly from our self help group if only to arm ourselves with critical questions to put to our health care provider. .

Best Wishes Chris (Blackpool)

[maxineathersych in reply to JediReject]

Thanks Chris. We've not really had any information from the hospital. At the same time I really don't want to panic my partner. I guess I'm just trying to refresh my knowledge on mf as I'm aware things have probably changed a lot in 20 years. Hopefully once we've got our heads around the diagnosis we just have to make the most of each day.

Maxine

[JediReject in reply to maxineathersych]

Please let me know how your hubby gets on Maxine. And don't forget if I can help along the way feel free message me. . Good luck. Chris

[JediReject]

Quite right Marine, , we have a number of forum contributors whose partners have an MPN and want more information so they understand their condition and it's symptoms and support them as best they can but without necessarily sharing their knowledge.

It's good that you want to find out more and things have most definitely moved on in leaps and bounds in the last 5 years never mind 20.

I'm sorry if my reply was a bit full on at this stage for you its just I've found it better to have first hand accounts rather than maybe pick up some of the mass of info on the Web which can be really scary and we'll out of date. Stick to reputable sites like MPN Voice, Mayo Clinic US, Mc Milan. . .

Your hospital should provide you with sufficient info really but Maz can help you at this early stage as she and the team do a great job. . .

Cheers Chris

[ABman]

I have had PRV for over ten years, now 76. It has certainly affected my life and what I can do, but I can manage okay if I don't do much stressful or hard work, at least not for very long. Somehow, I keep adding new symptoms, which isn't so pleasant. Haven't been able to bathe for years, and use only Sproam to wash myself. Could go on at length! Different people experience it in different ways. Meds keep me going, and I feel lucky to be alive, especially considering that my life expectancy was only about 2 years if I hadn't had treatment. Who knows, maybe someone will actually find a cure! Best wishes to all.

LH

[JediReject in reply to ABman]

Hey keep soldiering on Abman, , your symptoms sound very much as mine were and some days are harder than others. Like you I had problems around bathing, no way I could use shower.

I admire your positive outlook and I feel lucky as you do because although I'm younger I have lost several mates in the past few years one or two very suddenly. And with my recent transplant I have got a good shot at full recovery. . . Cheers Chris