MPN Research Foundation - new Stem CellTransplant Timing Tool for MPN Patients

[Rachelthepotter]

Hi all

An email just dtopprd into my inbox from the Mpn Research Foundation and they have today launched a new tool to help decide when to think abt a SCT The link to it is at the end of this post

Coincidentally I’d just asking about maybe having a session at the MPN forum at Guys in November on the various prognosis indicators. (Could be cslled MIPPS, , DIPPS and boomps -a - daisy ).

Regards

Rachel

mpntransplant.com/

[crapaud]

Interesting - I tried and found that my symptoms at the time it was decided to undertake my SCT were according to this tool at Intermediate 2 level, the element that differentiated from attaining High Risk with this tool was that I did not have a high level of white cells which in fact for me was in reality a bad point (MDS-U - very low red, white and platelets).

So, to conclude - use with caution since things aren't always simple!

[MFBMT2011]

I came out as IR2 using this, based on my input seven years ago, just as I was diagnosed originally and went to transplant. This is a tool to help our haematologists to help us, as a number of us know from experience that not all are up to full speed on our rare disease.

Chris

[JediReject]

Hi Rachel , , , hope youre doing ok. Very interesting so thanks for posting this link. I am very familiar with the DIPSS scoring system and at first I thought well its nothing new just updated. But actually the whole package there with the test to see where you're at is really useful if you don't mind reading how long or not you might have.

As it happens I came out just where I expected at intermediate 2 which validates my decision to opt for SCT. Factored into my decision was the fact I was high risk of transforming to AML which the article points up as a fly in the ointment as it's unpredictable and worsens your chances of a successful Transplant.

I went roughly ten years before needing my transplant but I presented with major symptoms at diagnosis those being a very high white cell count, an enlarged spleen, gout, and the usual night sweats, itching and fatigue. So was lucky to go so long before SCT. Most people at 10 years might only just be at intermediate 1. And many with a lower symptom burden can go much longer.

It is a difficult decision to undergo transplant and anything which can inform people's choices is always welcome.

Cheers Chris

[flog in reply to JediReject]

HI, I have been reading your posts with great interest, I m a 45 year old male diagnosed with ET some 8 years ago, now progressed to MF. You say it was roughly 10 years into your diagnosis before you needed a SCT, were you diagnosed with MF originally or was that a progression from another blood disorder. I am not coping very well at the moment with the worry as to what is in front of me, as I have two young children. I know we are all different, but I am trying to find out from other sufferers, advice about how they dealt with their diagnosis.

Maurice

[JediReject in reply to flog]

Hello Maurice, I will respond to your question with pleasure but I will ponder it and send you a private message . . Chris

[Hidden]

Rachel

Thank you for the link.

Anna

[Wyebird]

Thankyou, although I have Et I found it an interesting read.