Hi it's me again - thanks you for replies.
My husband who has myloefibrosis is experiencing more weakness in his legs and joints now and getting breathless - please could someone tell me how this disease takes over and how quickly. We really are very naive as to what to expect and not getting a lot of help from Dr's who keep telling us that his bloods are good and he is stable but he feels rubbish and very frustrated.
I have been diagnosed nearly 5 years ,with p.v....jak poss ,then I progressed on to full blown m,p,n, ,yes I get breathless ,and I think our thermostat doesn't work after a year or so ..the sunny days are so unpleasant for us to cope ,we get very tired in the afternoon we need to rest more .lots of little differences ,like ,the taste of our food is very changed ,we need much less to eat to feel full up .quite bloated after our dinner ,,not able to enjoy our sweet .. I have joint pain and my feet hurt me ,my circulation in my hands and feet has deteriated so I get pins and needles especially at night time .
I have been on the trial drug ruxulitnib for 3 years ,my blood results are excellent ,my doctors are very pleased with me ..I look o,k,
But brown spots and bruises are a nuisance now ,,as they are beginning to show on my face and neck .. I keep as well as possible ,by eating and drinking healthily ..no alcohole at all ..I used to enjoy a drink .but the drugs don't mix well with the drinking ..eat lots of fresh fruit ,,and fresh veg ,,
No junk food and definitely no cans or fizzy coca cola .. I hope this run down helps you to understand ,a little more coping with everyday lifestyle ..twinkly
Thank you twinkly - yes lots of changes over the last four years. N took ruxulitnib and had chemo to try and shrink his spleen but it didn't work that's why they removed it otherwise it would have probably burst as it weighed 7 .5 pounds.
His energy level is quite low just managing a little way when we walk the dog and then his legs start to feel like jelly.
He hasn't had alcohol since diagnosed with PV which he had for 20 years and then went to the MF .
Kind Regards
Anieand
My heart goes out to you both over your frustration as to what to expect from MF, however the answers lie with your consultant as he / she access to test results and hopefully knowledge of MPNS. . If not you ought to consider trying to see an MPN specialist. . Your husband might benefit from having a bone marrow biopsy if he hasn't had one recently. This will determine the level of fibrosis and could provide an indicator of disease advancement.
I have been told that MF is progressive and with the drugs I wouldn't nosedive over a short period of time and regular monitoring , blood results, biopsy, symptoms would indicate if I was getting much worse. I would go back to your clinic as you need to know if the leg problems are directly linked to the MF.
Chris
Thank you Chris
Hey Anieand... 
Chris (aka Jedi Reject) is the best expert I have found concerning MF, and as I am very new to these experiences, my responses unfortunately reflect the same...
I have just come from having ever more CT scans to try to find out what exactly is going on with my left-side to my abdomen?
The scans although inconclusive on my spleen (because I have very poor vein structure I was unable to have the dye injected on this occasion), however, it did show that I have an abnormal level of calcification to my iliopsoas muscle. Some of the literature that I have thus far gleaned suggests that the 'iliopsoas muscle's calcification could be responsible for my abdominal pains...?
Hence, I was wondering if anyone else knows anything about this condition?
As far as knowing about the progression of MF goes... who knows? we all come to it at different stages in our lives. Meaning that some of us might be diagnosed earlier, and some of us like myself do not find out until much later in life, possibly having lived with all of those known symptoms for many many years etc...?
Like your husband, I too suffer from extreme joint pains, fatigue, abdominal pains, sweats, pruritus (itching), headaches, extreme nausea, sleep deprivation, a slight facial tick and increasing memory impairment, probably as a result of my TIA last August (2015).
My dose frequency has just increased for Interferon and will double in a few weeks. Which possibly will mean even more nausea...?
Most days I just feel really lousy but I am trying to put a happy spin on things and trying to educate myself concerning my condition as best I can.
From what I have thus far read... People with our condition can live an almost normal existence with almost normal longevity...
But on the other hand, it can progress more rapidly in some people than others and as a result our quality of life can become adversely impacted.
Whichever will ultimately prove to be the truth, (in my own case), I refuse to be beaten by this thing mentally or spiritually (& I am not a religious person). However, I do live in awe of the wonders of nature...
In Australia, we do not have the luxury of a website like MPN Voice. But I am working on it...
I believe that the more we (those affected & family and friends) talk first hand about our variety of MPNs to each other the more we will all benefit.
My GP is next to useless, (with all respect he is not a specialist in this field). Therefore, the best information I gain from is from everyone here, and through my researching academic papers etc.
Anyways... I hope this might have helped you a little...
Best wishes to you and your hubby.
Steve (Sydney)
Post ET (pre-fibrotic) MF
I also have MF and find it very difficult to get anything much from my haem about life expectancy and likely routes of progression: I guess because it's usually not great news as well as difficult to be precise. The ruxolutinib website has some risk-adjusted life expectancies and stuff suggesting that rux gives a better quality of life on counts like shortness of breath, but doesn't tell you a lot about what to expect. In my personal experience the symptoms you describe are usually linked to either low platelets or low Hb or low iron. I have been told that MPNs can cause abnormal blood cells so your counts may be OK but the cells aren't doing their job properly. I can't remember whether you have an MPN specialist for a haem but that could be worth at least a second opinion? Or maybe try Macmillan - you can email your question.
I feel a lack of empowerment and control because I can't discuss what to expect with my haem and am becoming quite angry because the medical establishment seems to think it has the monopoly on what it's good for me to know.
Hi jane13. You should ask your hematologist the straight question re life expectancy. They should be able to tell you what risk category you are in and a view about what you could be looking at. It is not definitive, and I am newly diagnosed with MF. I was given a range with some caveats both on the upside and downside. Not easy to hear but I find that information helps me process. If your specialist doesn't know you may want to think about seeing an MPN expert.. Good luck.
Thanks, yes have tried this and have independently sourced the stats about life expectancy by risk category but haem says "you won't feel happier knowing". Have already moved from local hospital to specialist centre 3+hrs round trip away!
Personally I am not keen to be inquisitive about the future regarding my MF - maybe because I am the sort that will start looking for changes and worry about them. I trust my team at Guy's Hospital to tell me all I need to know and if they say do something, I do it. That does not mean to say I have no control over my daily life - I loath the breathlessness and the fatigue but play a game with myself and if I have had a bad day yesterday then I purposefully stretch myself today to even things out. I am off today to have a blood transfusion to try and help my lack of RBC and then tomorrow I am off to Spain. Life is for living even with this horrid condition. I do admire those who walk/run miles for our charity though - maybe one day, I shall keep working on it. Good luck to all who tread this path and I wish you well.
Linda
Well said everyone, , the themes in our collective replies kinda put MF into perspective particularly in terms of its unpredictability from bod to bod. They also help to demonstrate why I took the monumental decision last year to go down the risky BMT route.
As the late great Muhammad Ali once said " Don't count the days, make the days count" . . . .
Carpe Diem !!
Chris
Myelofibrosis diagnosis
Covid isn’t that bad after all
Sacked the haemotologist !
A model of good MPN care
Another newly diagnosed
