ET progression question

[WileyFrench]

The Canadian lymphoma association says that the likelihood of ET progressing to MF or leukaemia is about 1%. My haematologist says maybe 3 to 5%. In any case very very low. I am assuming that is the experience with most of those on this forum – – even the long-termers. Is my assumption correct?

[JediReject]

From what I've read your Haematologist is nearer the mark but that %age would be over a marked length of time such as 15 or 20 years. I know there are several on the Forum who have ET to MF but I think there are many who will be lucky and not transform.

Regards Chris

[WileyFrench in reply to JediReject]

Thanks Chris Yes, you’re quite right about the “over the length of time” part. And I guess most would not transform, given the small percentage statistic.

[katiewalsh in reply to JediReject]

Hey Chris! Is that a new photo or have I completely lost all of my memory cells? Either way, it’s a great photo of you! Katie

[JediReject in reply to katiewalsh]

Yes it is Katie , very observant of you there. I haven't quite mastered the art of getting the optimum position so it shows all my boatrace . . . x

[beetle in reply to JediReject]

Hi Chris. Glad to see you on here again. Your absence was concerning me and I set out to pm you but either brain fog or my technological incompetence prevented me from doing so. I know I have managed it in the past so very frustrating. I don’t want to hijack this post but hope you are still taking your baby steps in the right direction. Best wishes, Jan x

[stillkicking]

I'm definitely not a mathematician... but I do think that the stats on all this are rather difficult to interpret even for those that are skilled at such things. The numbers are all made more wobbly by the rarity of the disease, and also the fact that many of us are first diagnosed in our late 50s or early 60s and are reaching a time in life when other health issues can clamour for attention!

For younger people with an MPN the picture is a lot less clear from a statistical point of view, because the numbers of young people with MPNs are so few. However, there is a more hopeful "spanner in the works" for those who try to crunch numbers, in that the younger people are much more likely to receive the benefit newer drugs and treatments that are being developed, so have a real chance of doing much better than people did in the past.

My GP (who I like very much), did tell me, not long after I was diagnosed with ET, "Try not to worry about it too much, after all ... you might get run over by a bus tomorrow!"

Whilst this may sound a bit insensitive, and those of you who don't know my GP may think she may have a very bad "bedside manner", she is a fine and sensible person and has helped me a great deal over the years, especially at times when I have been overwhelmed by what "life" has dished up for me, and I am very thankful for her.

I confess that I do still go through dark periods of worry, but I do eventually bob up again smiling when I think of my GPs words of comfort!

Best Wishes,

Peter

[Monkey57 in reply to stillkicking]

I totally agree. Too many uncertainty in life. Worry is useless. But it is very naturally to worry. I said don't read internet that much which is full of negative comment.

[beetle]

My ET progressed to MF after about 18 years. I guess I’m one of the unlucky ones. However I was treated with busulphan in the early days and I have a sneaky suspicion that that has not helped. Wasting energy worrying about the future will not change it so best to live life to the full on a daily basis. There is so much development happening in the research field with MPNs that any statistics are bound to be historical and therefore possibly redundant. Think positive! Very best wishes, Jan x

[Wyebird]

Oh Wileyfrench Thankyou so much for your positive attitude post. It’s posititivity I like to hear. I do wish you all the best.

[ChelseaF]

I was told that it’s more along the lines of 15% over the course of the disease. Because my platelet count has been high since my 20’s and I hope to have many decades with this disease, I have done a lot of research. From my reading the likelihood of progression rises the longer you live with the disease and seems to also increase with age. So a person who is diagnosed at 30 and lives to be very old will have a mich different risk than someone diagnosed at 60.

Some articles give us a transformation rate at 10 years which is not enough time for younger patients to know their risk. Other articles show that this rate increases each decade but because this data is from patients who endured different treatment than we do now we can’t really know if those numbers translate to us today. It’s difficult to pin down the actual risk and treatments are changing so we just don’t have enough data to say definitively.

I think it’s important to keep in mind that the risk is there and is real and it’s part of why we need to be monitored for changes.

[WileyFrench in reply to ChelseaF]

Thanks for this. I guess I’m wondering why, if ET doesn’t progress to MF or leukaemia (which every study I’ve seen says that it’s a minority percentage that do progress), and we don’t have a stroke or other thrombus, then why does it shorten life expectancy at all?

[Graham7694]

I so wish I had the opportunity to progress 😩 I went straight in with MF so any progression from that is not the way forward! On the bright side I have the NHS and am on Ruxolitinib so that should keep me going for a while and in the meantime some of the the other drugs will come along and present me with a cure 👍

[WileyFrench in reply to Graham7694]

I hope that is exactly the way it happens!

[Wyebird in reply to Graham7694]

Sending you huge hugs

[Selvamok]

At India, most of the common peoples not behaving gently with cancer patient and they are looking as HIV and Leprosy Patients.

At India all are keeping distance with cancer patient. Hence all MPN, PV patients should not classified as cancer.

When progress into a form of like leukemia then may be call cancer patient. Till that MPN, PV patients should not classified as cancer.