Hello, I am new here. 31 years old
Got diagnosis pre-mf.. I've got no symptoms.. my blood panel is perfect. Only i have some troubles with my liver enzymes. They didn't found a reason for the elevation.
Ive got a bone narrow biopsy. Now i am diagnosed with Pre-MF. I am pretty scared.
How long will I live.. when will it go to stage MF..only cure is a allo-sct.. thats pretty scary
I have a little boy, 8 months old.. I'd like to see him growing up..
I feel for you ... You've come to the right place for support.
My husband has got post PV MF . He's on ruxolitanib medication and it's working really well.
He's had tests for a sct but he may never ever need one.
Medication has come along way now .
My husband is 48 this year he still works full time .
We have stopped worrying about a sct .
These blood cancers can be managed.
Try not to read up too much on google.
Take care
Tracey
It is understandably scary at the start but there are many here who can help you learn about your condition and your options from a patient’s perspective. Myelofibrosis can move quickly and very slowly with people having the condition for many years and you will hear from some here.
There are various drugs that can help manage the symptoms and work well but none can cure the disease. However we are all different and react differently to them. They work for some and not for all so people here are on different ones.
Stem cell transplant (SCT) is a potential cure but has its risks and is not suitable for all. It is something for consideration if the condition moves on rapidly but should not be left to be used as a last ditch saver as one needs to be in good general health and fitness to tackle it. (I had mine 9 years ago and I am now 67).
So learn about your condition and options from the specialists so that you can understand and be involved in the decision making. Prepare questions(write them down) before any medical appointments and make notes. Take someone with you to appointments as fourvearscare better than two! Ask questions and remember that the only daft question is one you wonder about and don’t ask!
In the meantime exercise, keep fit and focus on your general health.
Chris
I can only offer you my thoughts based on my personal experience with post PV MF. The best advice I was given having been diagnosed with MF was to ask the consultant haematologist at my local hospital who was responsible for my care to refer me to an expert on MPNs. Prof. Harrison at Guys is certainly the most well known and is a world renowned expert on MPNs. I asked my consultant to refer me to Prof. Harrison and she agreed to do this. You have been diagnosed with a very rare condition and it is important for you and your treatment going forward that you get advice from an expert. A 'generalist' haematologist at a local provincial hospital, as good as they may well be, is unlikely to have the depth of knowledge and experience that is needed.
Prof. Harrison suggested I might be helped by enrolling on the Pacritinib drug trial when the Ruxolotinib ceased to help me. I was able to enrol on this trial at The Christie in Manchester under the care of Prof. Somervaille. The top MPN haematologists are a fairly small group and they all know each other. As a result of 'conversations' between Prof. Somervaille, Dr Malladi, transplant specialist at the QE Birmingham and other consultants, I was finally deemed suitable for an SCT which went ahead just over 1 year ago. It seemed to me that once you are under the wings of the top experts you then get the best possible advice and treatment. Even Dr. Malladi wanted to refer me to Prof. Harrison for a final decision on whether or not I should have an SCT.
Whilst it sounds as if you are a long way from needing, or ever needing an SCT, it is nonetheless important you have the best diagnosis and advice on treatment that you can get. Don't be bashful. Push for this!
If you want to ask me any other questions about my experience I'd be only too happy to try and answer them but you really should seek out a consultation with an expert MPN haematologist. I wish you all the best going forward.
Tim
Are you JAK2? Any other mutations such as CALR? CALR is a good mutation to have
You are hopefully a very long way away from STC. In the meantime there are dramatic therapeutic improvements in the pipeline. If we assume that worst case, you are 10 years away from STC, I can assure that that the options available will be very different to now. STC may no longer be required and if it is, it will be safer and easier than now.
Best thing you can do is focus of life style. Exercise and healthy diet. Avoid stress.
And you might start thinking about/researching a drug called Pegasys (latest version is Ropeginterferon) . Some Hems advocate starting low dose Peg for early stage MF to slow down progression. Suspect your bloods are too good to start now but worth chatting to your Hem next time you consult. Many of us think Pegasys an amazing drug assuming you can tolerate it. I’ve had no side effects and it’s completely controlling my bloods plus reduced my % mutant JAK2 from 80% two years ago to 12%.
So please don’t worry. At your young age (progression rates increase exponentially with age) and since early stage MF, I suspect you will end up living a normal life span thanks to medical advances. If you check some of my past posts re new drugs in trial I think you will be reassured.
A number of expert hems say next 5 years will be game changing.....
The investigation is still ongoing, results of the mutations are not yet known.
the weird thing is I have high Hb (+17.5g/dl) HcT (+50.8%) RBC (+6.19)
First thought i would have PV or something, but they say it is Pre-MF..
Hopefully it will stay stable for a long time. I am running 3 thimes a week never been so fit the last 10 years :).
Hi Luigi. I can really only echo what others have said. I was diagnosed with MF eleven years ago when I was forty. It was terrifying at first because I knew so little and read Google way too much. I was regularly monitored for the next nearly ten years and finally, I went into Addenbrookes in Cambridge for an SCT in June last year. As someone else suggested, you are a long way off from this and you may never need one. I would, however, like to reassure you that whilst the procedure is brutal and recovery takes months, I am fully recovered, fighting fit, and ready to tackle the next fifty years. 
That is amazing!!! So glad you have had a great outcome! 💕
I was diagnosed over five years ago as JAK2+ with either PV or PFMF and my haematologist said that there can be a blurring of the lines when it comes to diagnosis in many patients, hence why I could have one or the other. I was put on hydroxycarbamide and its worked well ever since.
Hi I remember being just where you are, feeling well but some medical facts showing that my body wasn't what it should be. Lifespan issues etc was a huge thing for me having a young family at the time. I was 36 with 3 children under 5. 11 years later and I'm still here and well! No symptoms or drugs. When things do progress, there are loads of options out there as people above have said.
Ask MPN Voice for a buddy and I'd be glad to support you. Hope these few words have given you some reassurance!
Travel insurance with Post ET, MF
Anyone with ET that has progressed to MF?
Scuba & MF while on Jakafi?
Pre MF info?- Vitamin D and immune cells stimulate bone marrow disease
Travel insureance from UK to Greece with MF
