What is MPN/MDS overlap syndrome?

[Rokeroar]

Hi, My diagnosis is MPN/MDS overlap syndrome but I know next nothing about it. My haematology appt. in May was cancelled. Apparently this was diagnosed after bone marrow biopsy in 2017 but not explained to me. Last November at a haematology appt. I asked what my diagnosis is and was then told the name and that I'd need blood transfusions and "things". Can anyone tell me anything about the condition? I mean anything...

[hunter5582]

I am aghast that you would have had this diagnosis for this long with no explanation. That is an unacceptable level of care. You are not the only person on this forum with MPN/MDS overlap syndrome. I hope on of the others with this condition can weigh in with their own experience. There is information from reliable sources on this condition. Here are some resources to start educating yourself.

patientpower.info/myeloprol...

silvermpncenter.weill.corne...

ashpublications.org/blood/a...

One final resource, perhaps the most important - here is a link to docs with the expertise you need. Many hematologists do not have the KSAs you need for effective treatment for something as rare as MPN/MDS overlap. You need and deserve a hematology team with the KSAs to treat you and a commitment to high quality care that includes educating you about your condition and your treatment options.

mpnforum.com/list-hem./

All the best yo you. Please do let us know how you get along. You will doubtless learn a lot in the next several years - sharing what you learn can help everyone. We are stronger together.

[Rokeroar in reply to hunter5582]

Thank you so much for this. I can't tell you how much it means to me. I've read two of the links and am about to contact my GP to ask for a referral to one of the two London based specialists referenced.

Thanks again, I'll let you know how I get on.

[Eadaoin]

I was diagnosed over 20 years ago with MPN/MDS overlap syndrome and found there is very little known about it. As far as I can tell there is little or no research on it. All of my testing and treatment have been MPN related. My MPN is ET. I have been told that regular monitoring blood tests will show if there is a deterioration. I am lucky in having a very respected, leading, Consultant and I have enough confidence in her to not worry. I do hope you are as fortunate.

[Rokeroar in reply to Eadaoin]

Thanks. Now spoken to my GP who is referring for a new appointment and asking the local hospital to refer me to Guys/St Thomas. I suppose you're referring to Claire Harrison?

[Tartanlady in reply to Eadaoin]

I am new to this site but diagnosed with MDS/MPN overlap over a year ago. I must admit I was delighted to see you have had the disease over 20 years and are still here to tell the tale.

[Eadaoin]

I am under Guy’s and St Thomas’ hospital.

[Tartanlady]

Hi Rokeroar, I also have MDS/MPN overlap syndrome. The MDS makes my Haemoglobin levels low and the MPN makes my platelets high. I’m on Asprin for the platelets and on weekly EPO injections for my Haemoglobin. Diagnosed March last year.

[Rokeroar in reply to Tartanlady]

Thanks. I've taken 75m aspirin daily since having a heart valve replacement in 2016.

I have a virtual haematology appointment on the 22 July. See what that brings.

[JaK2ET]

I hope that your appointment has gone well and that you are getting the information and help you need ...

[Rokeroar in reply to JaK2ET]

It was the best haematology appointment I've had. It was with a consultant who is developing a specialism in MPNs and was happy to talk about the subject, unlike previous appointments. She explained that with MPN/MDs overlap syndrome you don't have one of the variations of either condition as it is what it is (does that make sense?). We ran through the numbers and were pleased to learn there's no change since November. We covered my symptoms, in particular the painful attacks in my right ankle, and she prescribed ??? for the build up of uric acid. Best of all she has made a referral to Claire Harrison at Guys for a second opinion which I hope to turn into a referral for treatment.

The reading of the papers which Hunter sent and the reassurance from the consultant leave me in a much better place regarding the diagnosis.

Thanks to everyone who replied and showed concern.