cancer in blood 6 months after STC

[PiperAlfie]

Hi everyone,

Goodness me a lot has happened in the 2 years since my last post.

In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective.

I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this year.

It’s been 7 months since the transplant and have GvHD affecting my skin and liver . My chimerism results were falling 96, 94, 91 with the last one (4weeks ago) going up to 96. My liver results also improved at the same time. All good news and heading in the right direction. My white blood cell count has fallen every week since the SCT. It’s now 1.5 with lymphocytes at .9.

However, two weeks ago I was informed that theMPL is showing in my blood (was not given the actual count) It was decided not to have a DLI at the moment because of the GvHD. I assume from that there was only a small amount of MPL detected.

I have been trolling through this site today to see what the others journeys have been, I realise that my results are not the best but I am actually feeling ok with much more energy than I have had for a while.

Sorry about the length of this post but a lot has happened! I would be grateful for any responses, information, details of questions I should be asking etc

Many thanks, Janice

[Jm954 Administrator]

Hi there,

this is a CLL forum and so it's unlikely that you will get many helpful responses because there is no experience of MF.

Having said that, you clearly have a good understanding of what is happening with you. I'm sorry that you have GVHD affecting your skin and liver, that must be unpleasant and slightly worrying, especially as your MPL levels are also increasing. As you say, you cannot have DLI to improve your engraftment and eliminate the MPL because it will probably make your GVHD worse.

I honestly think that your situation is so specific to you and also quite complex, that the only useful source of information and guidance is your transplant doctor.

I'm sorry we can't be of any more help but there may be some expertise on the Leukaemia Care Forum which is also on Health Unlocked. This is the link healthunlocked.com/leukaemi...

I hope everything comes right for you after everything you've been through with the transplant process.

Jackie

[PiperAlfie in reply to Jm954]

Thank you Jackie , I thought I was posting on the MPN webpage. It is very obvious I am not used to posting updates. Thank you for your thoughtful response..

Hope

You have a lovely Christmas x

[PiperAlfie]

No sorry, I posted on the wrong web page!!