ET to MF

[stevenjust]

I have been diagnosed 6 months am 40 and male. I've been reading recently that ET can progress to MF. My Dr or Nurse have not told me this. Is this more serious and what are the chances. Thanks.

[JediReject]

Hi Stevenjust. . . Sorry to learn that you have fairly recently been diagnosed ET. As a guy with Primary MF my advice - for whats its worth - is to by all means find out about both conditions using your specialists and reputable sites like MPD Voice, McMillan , Wikipedia even, but first and foremost to concentrate fully on living and coping with ET. I am unaware of the statistics regarding going on to develop MF but I honestly would put that entirely to one side and deal with it if and when it does.

I will need a bonemarrow transplant in the near or very near future but although I know the basics of it I purposely haven't researched it as yet because I dont it to consume me as Im a bit of a worrier, deep thinking type, so Ive pushed it to the back of my mind until its upon me which allows me to deal with the here and now. Im a believer in not going anywhere near a bridge until you have one to cross.

Hope this makes sense coz i guess some would disagree and say in talking bobbins but its partly about finding what works for you. Cheerz and good luck to you.

[Val_P in reply to JediReject]

Oh I so totally agree. When I was first diagnosed with ET I searched every website I could for information, and all that happend was that i worried myself silly. It really doesn't help. So now I make the most of the here and now. Living with ET has got so much easier now i have stopped worrying about the future. Enjoy what you can do don't focus on what you have no control over. Good luck

[Mwalimu]

Hi, Stephenjust. I agree with Jedireject that you should concentrate on the ET and use the websites, especially MPDvoice. Secondly, I would suggest you don't automatically rely on what your doctor and nurse say (unless they are MPD specialists): If you feel you are not getting enough information and would appreciated further advice, you have the right to ask for a second opinion and can request an appointment with an MPD specialist.

[Alired]

It depends on which medical paper you read.

For example the paper “Prognostic factors for thrombosis, myelofibrosis and leukemia in essential thrombocythemia: a study of 605 patients” gives a ten year risk of 3.9% and a median survival of 22.3 years. I suggest you google this title and read it for yourself because there are many variables which affect your likelihood of developing MF (prior thrombotic events, anaemia when first diagnosed, platelet count, age etc).

haematologica-thj.org/conte...

The paper “Management of Essential Thrombocythemia” makes the statement “Survival of ET patients does not seem to differ substantially from that of the general population” but goes on to say evolution to MF is 3.9 – 8.3% at 10 years and more than 15% in 15 years.

asheducationbook.hematology...

I was diagnosed recently and I am 38, I did not enjoy reading these papers and learning that I have a higher probability of a shortened life span. But given that we are both young, low risk (until we get older) and provided we control the thrombotic risk we should be able to get into our 60s and even 70s. To coin the phrase of the immortal Gandalf in Lord of the Rings “We have to make the best of the time given to us.” I probably won’t have the long and happy retirement that my parents had, but when I do go, I want to be able to say I had a full life and achieved all that I wanted to achieve.

[jane13 in reply to Alired]

Good research thanks.

[jane13]

Hi, as i understand it, all the MPD disorders inclusing ET are caused by acquired genetic mutations that tell your bone marrow to produce unusual numbers of some blood cells. The stuff your bone marrow does "wrong" can change over time - for example, I started off with PVR ( too many red cells) but now have an intermediate form of MPD (not classic PVR any more) with too many white as well. Statistically i understand ET is most likely to stay as "pure" ET, but it may change over time. I don't think the professionals know all about the how and why of these changes but they know more than me ! so I would go and ask your haematologist about this.

[beetle]

I had ET for 17 years and have now been diagnosed with MF. I believe the statistical chances of this happening are very low but there is also a general feeling amongst the medics that ET has been globally overtreated inthe past and now the threshold for treatment in asymptomatic patients is much higher than it was when I was diagnosed. I had symptoms anyway but have been on chemo (HU and Busulphan for a short while) ever since diagnosis.

The statistics quoted now are all based on what has happened in the past and the situation will undoubtedly change now more research is happening since the discovery of genetic mutations associated with the disease. New medications are being developed and tested right now so there is no point in getting hung up over statistics that are no longer really relevant. My advice would be the same as others -to educate yourself and just deal with ET right now. At the moment they are quoting 1-5% of ET progressing to MF which means that 95-99% will NOT progress. - pretty good odds in anybody's book? Hope it helps to look at it like that.

[Hidden]

I have ET and came to the same conclusions as beetle:one the odds etc are much higher for not getting MF than getting it and the most important factor is that there are far more research studies and clinical trials going on now so we should wait for new data.

[light]

Good on you beetle, that's the way to go.

[isidora4]

Must say that beetle's attitude is the right one - I have had ET for about fifteen years and was on Hydrox until last year - I am now only on aspirin . I try to live my life normally and don't think a great deal about my ET - I see the haematologist at the hospital every couple of months and have the usual blood tests - my platelets are now just over 700 the hem has told me that depending how much they have increased when I return in a couple of months I may need to go on medication again - well, so be it if necessary! It is true that very few ET cases progress to MF and most of us finish up leaving this life because of some other problem disconnected with our ET. Cheers!