Why this study gives so high risk numbers from p... - MPN Voice

MPN Voice

10,445 members14,398 posts

Why this study gives so high risk numbers from progression? I thought it was lower

Aneliv9 profile image
9 Replies

bloodresearch.or.kr/journal...

Written by
Aneliv9 profile image
Aneliv9
To view profiles and participate in discussions please or .
9 Replies
EPguy profile image
EPguy

In the discussion section I see this text:

<<The risk of leukemic transformation varies greatly with the features at the time of diagnosis, with the 10-year risk being highest in PMF (10-year risk, 10–20%), followed by PV (2–4%) and ET (1–2%)>>

This seems familiar. Is there a specific risk you're looking at? There are lot of numbers to see in this report.

Although they say the Korean and Western risks were similar, if there are any diffs, it might relate to higher smoking rates in Korea, Table 1, 20-40%. Most Western countries are well below this as far as I know. Smoking is a known problem in MPN.

Aneliv9 profile image
Aneliv9 in reply to EPguy

This is what scared me! And if at 10 year is 8%, then what happens with this percentage after 20-25years? My doctor told me that life time risk was 1-2% and now i see this..The 10-year incidence of leukemic transformation was significantly higher in PMF than in ET (40.0% and 7.9%, respectively; P =0.046)

cmc_ufl profile image
cmc_ufl in reply to Aneliv9

I am not sure why your doctor would have told you a lifetime risk of 1-2%. That is not accurate. For ET, that level of risk only applies for the first decade. After that, the risk goes up.

For a lifetime risk, long-term studies (done over decades) are more relevant. I’ve seen some studies quote a 30-40% risk of progression to MF after 30 years.

Keep in mind that anything in the literature will be outdated to some degree since current treatments are better now than they ever have been.

Aneliv9 profile image
Aneliv9 in reply to cmc_ufl

Ok yes it seems very logical... So it is inevitable that we will all progresss. But these long-term studies maybe have included pre -pmf in the ET group? And 1-2% you mean the MF risk,or AML?

cmc_ufl profile image
cmc_ufl in reply to Aneliv9

Progression is certainly not inevitable for everyone, but yes, the risk is higher than what your doctor told you.

For ET, the most commonly quoted risk for AML over the first 10 years is 1-2%, and MF risk around 5-10%. Both of these go up significantly over time.

My hematologist told me that around 40% of MPN patients can expect to progress by 20-30 years, with 30% going to MF and 10% going to AML. This seems somewhat consistent with what I’ve seen in the literature.

Aneliv9 profile image
Aneliv9 in reply to cmc_ufl

I am going to throw up. I stressed a lot, i want to cry! I feel like a prisoner in my body

Aneliv9 profile image
Aneliv9 in reply to cmc_ufl

Can you please give me some links of these studies?

ainslie profile image
ainslie in reply to EPguy

I have not fully read this paper but a few points to consider1. This is Korea and we don’t know the standard of care there

2. There were quite a high percentage of smokers

3. Drugs seemed to be hydroxy mainly, no Peg or Rux

4. It’s quite a small study over a relatively short period

mhos61 profile image
mhos61

I was surprised at the high number of smokers in this study. The additional comorbities seem high in my opinion too (maybe smoking related).