MDS/MPN

[Polish1]

Hi I was diagnosed 9 years ago with MDS/MPN overlap .I have never heard of this condition completely stunned.Only now am I facing up to it .Has anyone else had this diagnosis .Thankyou in advance

[beetle]

I was diagnosed with post ET MF in 2012. This year I had a bone marrow biopsy that showed features of MDS also so I now have that diagnosis too

Best wishes, Jan

[Polish1 in reply to beetle]

Thankyou Hope all is well for you

[champ30]

Hi ,I was diagnosed with both MDS/MF in 2017. Then I was high risk MF but low risk MDS. My type of MDS being -5q deletion.....you can ask your haematology doctor which type of MDS you have.I hope this is helpful.Lynn

[Polish1 in reply to champ30]

Thankyou and may I ask are you well and tolerating meds

[champ30 in reply to Polish1]

Hi , What a question for me at the moment? I have covid even though I had my covid Jab 2 weeks before I contracted covid!!.I have had the antiviral tablets which I guess may have helped but It's still lingering on sadly.At the moment I'm taking hydroxicarbimide . Originally when diagnosed was on Ruxolitinib but getting a lot of infections (I also have bad Bronchiectasis) then my haematology doctor put me on Lenalidamide, which I tolerated well and was brilliant....no blood transfusion and leading a pretty normal life.,much more energy. Then I had seronegative inflammatory arthritis in 2020 during lockdown and was in hospital for 3 weeks at first unable to walk or initially get out of bed. I continued on Lenalidamide but again began getting lots of infections due partly to the drug causing low neutrophil counts and my immune system so low I was taken off this drug and now on hydroxicarbimide. I tolerate.it well except my platelets are still not in normal range but again due to Bronchiectasis and infections I am only on 500 mg 5 days a week. I am transfusion dependant...one bag approx every 10 days. My haematology doctor is brilliant and now has corresponded with Dr Claire Harrison...they are going to try me on anegraide to reduce platelets but I'm not sure as it seems it has side effects .... we're going to discuss at next appointment.

I don't know what meds you're on....let me know .

I am 73 and a positive person....the other conditions don't help and I have to be careful of infections. I think covid hits us with

MPN and MDS harder too.

Best wishes Lynn

[Polish1 in reply to champ30]

Oh so sorry to hear that had consultation today and hg normal platelets a bit high but nothing to worry about I am on hydroxycarbamide 500 Twice a week low does aspirin and various vitamins only thing I have is bad appt and nausea but was on iron think that might be the culprit Hope you feel better

[Polish1 in reply to champ30]

I was having Pegasus injections but I too had many infections including sepsis so changed to hydroxy no infections but low appetite and nausea

[champ30 in reply to Polish1]

Thank you your information.....it sounds like you're still low grade MF and MDS ....I hope so and how are you?

[Polish1]

yes very low risk MDS iam fine but nice to talk to people with as this is very lonely disease with no one to swap data Hope you continue to improve I also find all the blood tests and consultant appointments very intrusive as there’s no end in sight this is a long road and I do get depressed but I know I’m lucky plenty of people much worse off than me.