Anyone else with MDS/ MPN overlap?

Recent diagnosis
1

And a gene profile of SF3B1, JAK2, IDH2, SRSF2; karyotype 46 XY

It apparently means my overlap profile is uncategorised which.i assume means its relatively rare.

However I’m throwing it out there in case anyone else has similar that I could compare notes with as suggested by @Duncan

3 Likes
2

Hello there @Hughbie, this is brilliant that you asked the forum about these specific gene mutations, I’m sure with time others will find you here.

Hope you don’t mind but I had a look using the search box at the top and found a few other threads that might of interest.

Here’s some forum members sharing about Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') and SF3B1: MDS/MPN overlap with SF3B1 mutation – seeking shared experiences & guidance

Another member with SF3B1: New here? Feel free to introduce yourself here 👋 - #853 by Jono

And a bit further back, another member with SF3B1: Making a decision as to have stem cell transplant or not - #8 by BonnieS

I’d say when reaching out to other members directly check first how long ago they posted as much can change since the time of sharing. If you add an @ before a forum member’s username then they should get a notification. Of course, some members may not respond.

Perhaps checking via the search box above the other gene mutations you were diagnosed with might be fruitful in terms of finding others around the forum who have similar diagnoses?

I’m sure you’ll also find many others who have shared their Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap diagnoses too. From my non-medical understanding there are a lot of similarities between your overlap diagnosis and Chronic myelomonocytic leukaemia ('CMML') so that’s another good subject to look for.

Here’s a great thread here full of folks dealing with Chronic myelomonocytic leukaemia ('CMML') which may be of interest: Recent diagnosis CMML

Happy searching @Hughbie!

2 Likes
3

Wow! Thanks so much @Duncan

The last point is particularly interesting to me because it was Chronic myelomonocytic leukaemia ('CMML') they suspected before they did the bone marrow biopsy basically due to persistently high monocytes for about 12 months.

Ive got some other leads to follow thanks to your efforts. Really appreciate that.

2 Likes
4

It’s interesting to me too @Hughbie just how many overlapping aspects of these various types of blood cancer there are—apparently there are over 100 types! Hopefully the Chronic myelomonocytic leukaemia ('CMML') link will be helpful, and even help you feel like you have more in common with others than that rare diagnosis you’ve received can seem.

1 Like
5

Thanks also for that link.to leukemia care. They class Chronic myelomonocytic leukaemia ('CMML') as one form of Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap.

That site was interesting and quite revealing too.

I’m very very fortunate in that I still feel well so far. It was discovered by accident while investigating something else.

So no reason to dwell on it too much at the moment but it is interesting to see how many seem to have blood cancer of some variety

1 Like
6

Hi Hughie,

I was diagnosed with Myelodysplastic syndrome ('MDS')/MPNoverlap early in 2121. I have been treated with hydroxychloride and a weekly Aransep injection . This worked very well until this year and now I am being treated with lenalidamide which appears to be working. I am 82 years old, so deemed unsuitable for a bone marrow transplant. My Myeloproliferative neoplasms ('MPN') gives me too many platelets, but they are now normal.
I wish you well and hope that you will keep in touch.

Best wishes, Kate S

2 Likes
7

Thanks @KateS encouraging that you seem to be doing quite well 5 years after diagnosis. Im fortunate that blood counts are still in normal range except raised monocytes so it still appear to be at an early stage.

I wish you well too and thanks for replying

1 Like