MPN/MDS ??

[Mimi4times]

Anyone familiar with MPN/MDS.

This is my secondary cancers. Cannot find a lot of info on internet.

Mimi in GA

[DriedSeaweed]

Does this help?

hopkinsmedicine.org/kimmel_...

[Mimi4times in reply to DriedSeaweed]

Thank you!

[Cllcanada Top Poster CURE Hero]

Here is the section from the NCI for doctors etc

cancer.gov/types/myeloproli...

Patient Pages...

cancer.gov/types/myeloproli...

[Ohannie236]

Hi, Mimi. Sorry I don't have any good information to offer, but just want to send you lots of love and prayers. God's got this! And his arms are around you.

You're in my prayers tonight and going forward.

Love and hope to you from Ohio,

Annie xo

[Mimi4times in reply to Ohannie236]

Hello Annie,

Thank you for your kind words! Hope you are doing well as can be expected! Your right.... God’s got all of this and us!

Mimi in GA

[Ohannie236]

Thanks for yours! They operated on my finger and now it's the waiting game with regard to the pathology report. OSU says after they see that we'll know more about how to proceed. So glad God's so near through it all, for every one of us. May there be an arc of protection around all of us and the ones we love.

Big hug to you!

Annie

[Mimi4times]

Awwhh, thanks Annie. From what I have read , you have an uphill climb facing you. I pray that God gives you the strength and courage to get through whatever awaits you!

Bless,

Mimi in GA

[Jm954 Administrator]

Mimi, do you have a specific MPN/MDS diagnosis. There are a wide variety of types. I could probably help if you could tell me

Jackie

[Mimi4times in reply to Jm954]

I was told MDS with over-lapping MPN. He said it was very RARE and I will be written up in The American Journal Of Medicine. It has to do with a gene mutation. Does this help?

Mimi

[Jm954 Administrator in reply to Mimi4times]

Sorry I'm late Mimi, I've been away.

Yes, it's recently been recognised that there is overlap with MDS and MPD because both can be caused and driven by the same genetic mutations such as JAK2. Where there is evidence of both it's called MDS/MPN overlap syndrome..

Reading your previous posts you had hypereosinophilia syndrome which is a MPD and then severe anaemia which can be caused by MDS. You did mention haemolysis but I'm not sure from what you said if that was confirmed. Presumably, you've had a bone marrow biopsy to confirm the MDS/MPN and had your bone marrow genetics done. Looking down the microscope and seeing the morpphology of the cells is also an important part of the diagnosis.

As I said in my response to the eosinophilia post, the genetics will give you more information about which prognostic group you fall into. It's much like CLL in that it can change and hugely complicated - more than I can go into here.

Has any treatment been mentioned? That would tell you more.

If your case gets published I'd love to be able to read it. It's especially interesting because you've had no CLL treatment and all of this has occurred whilst you're on watch and wait.

You've had a very turbulent time with your CLL (not to mention the absent husband) and I hope this new development isn't too troublesome for you.

Please keep us up to date.

Sending very best wishes to you Mimi

Jackie

[Mimi4times in reply to Jm954]

Your absolutely right. I will start an oral chemo in two weeks; still weening off prednisone. I asked doc if I was a high risk and he said no. Also,no blasts?? But it can go into AML sometime down the road😩 which is scary. So is the MPN and MDS two different types of blood cancers?

Mimi in GA

[Jm954 Administrator in reply to Mimi4times]

Mimi, I’m glad it’s not high risk. Many people live a very long time with low risk disease and I hope that’s true for you.

Did your Dr say which oral treatment- Imatinib (Gleevec) or perhaps Ruxolitinib, depending on the genetic mutation?

Let us know how you are Mimi

Jackie x

[Mimi4times in reply to Jm954]

It will be Imatinib.

Thank you!

Mimi in GA

[Jm954 Administrator in reply to Mimi4times]

That’s a good drug! 👍😊

[Mimi4times in reply to Jm954]

👍🏻

[Judyanne]

NCCN.org has booklet on MDS