ET is LEUKAEMIA???

[shiela23]

Since the main problem is the bone marrow for ET Is it leukaemia??? Is it curable?

[Mazcd Partner MPNVoice]

hello Shiela23, no ET is not leukaemia, this information on our website will explain what ET ismpnvoice.org.uk/about-mpns/...

Some patients with ET can develop acute myeloid leukaemia at a late stage of the illness, but this is rare.

ET is not curable I am afraid, but in general patients with ET without severe clotting or bleeding complications have an excellent chance of living out a near-normal life span, if properly monitored and treated as necessary. Bear in mind when you're reading up about ET that in some patients the disease may remain stable or gradually progress over time, this means you may never experience many of the symptoms and outcomes that you read about, or if you do, it may not be for many years, many people with ET live normal lives for years at a time without experiencing complications.

Your individual situation and health history, as well as the ways you respond to treatment, can all affect your prognosis (the predicted outcome of the disease), your haematologist will be able to provide you with a more accurate picture.

Best wishes, Maz

[hunter5582]

At Mazcd indicated, ET is not leukemia. It is a type of blood cancer, but not an acute cancer. You will sometimes find references to it from organizations that deal with blood cancers like leukemias, but it is a different type of disease state. ET is a chronic disease that can be managed. Most people with ET will live a normal lifespan. You are more likely to die with ET than from it.

Be sure to check out the mpnvoice website. Here is another resource you may find helpful.

nccn.org/patients/guideline...

FYI - I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lived a good life and at age 66 continue to do so.

ALl the best on this journey.

[Jennytheb in reply to hunter5582]

Hunter, once again a good response. When I was diagnosed 7 years ago with Jak2ET it was suggested that I have a 15 year lifespan... "unless something else got me first!!" (have a lovely haematologist who does mostly try to see life on the funny side, this was as I was diagnosed!) I live a perfectly "normal" life at present with 1500 Hydroxy daily so good to hear that you have lived with it for 30 years plus at present.

Hoping you are coping and still finding answers to some of your "problems", your input to this site is always inspirational.

Best wishes.

[shiela23 in reply to Jennytheb]

Have you tried the interferon? Are all your blood test normal now?

[hunter5582 in reply to Jennytheb]

The ongoing quest to become "The World's Most Boring Patient" continues to be the most elusive problem to tackle. On the bright side, opportunities to learn more about overcoming health challenges have, in fact, slowed down a bit lately. I will take incremental progress towards "boring" as it is much better than becoming more "interesting".

[Smudger0122]

Hi Sheila I was diagnosed with Essential Thrombocythemia Calr last year.

Was confirmed with BMB in March this year.

Its been a frightening year, having this diagnosis.

I to worry about the progression of this, but have now been referred to Guys hospital to be seen by Professor Claire Harrison.

Which I am hoping her expertise will control my condition for the long term.

I currently take hydroxycarbamide and my platelet count has gone from 1665 2 months ago to 377 last month.

As hunter said its not a leukemia it's a blood cancer, with a small c.

Remain positive and keep in touch, this site is great for help.

Its really helped me out

Smudger (Mark)