MATEs FORUM

Hi Mia Grace Welcome to the group. As what Steve said, MPN is not common. I was also diagnosed with ET Jak2+ 3 years ago, though it was initially MPNU - unclassified MPN. My Haem told me that I was ET. Had BMB. I’m on 100 mg aspirin. My platelets are creeping up now on the 800 mark last blood test. ...

Hey Warwick So happy to see you looking so well!!! Such an incredible experience you had! Hats off to your courage and resilience. Thanks for sharing…it gives us courage and hope. Take care and keep safe! And yes, would love to know a detailed recount when you’re ready! 😊 All the best and God bless ...

Hey Steve and SilverET and all Had my 2 doses of Pfizer vaccine…no serious side effects…just sore arm and a little tired for a couple of days… I was scheduled to go back to the office 2nd week of July hence I had the vaccine completed during the first week. My Haems strongly suggested that I get the...

Hi Sue Sorry for the late welcome😅 but it’s good to have you join us…I’m also from Sydney… And sorry to hear about your experience before getting the correct diagnosis… I’m ET Jak2+ and diagnosed in 2019…I have had 3 Haems, and now remain with 2 (seeing one every 3 months and the other one every 6 m...

Hi Kathie

Sorry, I think I missed welcoming you in the group..had so many things going on last month…

Hope everything is going fine…yes it is nerve racking at times…but there are always brighter days!

Keep safe and take care…
Linda

Hi Rosie My name is Linda…welcome to MPN Mate!!! I have ET and Jak2+ diagnosed in 2019. I was devastated when I was told my condition and I did not know anything at all about it. My 1st Haem sent me for BMB and then told me to take HU or interferon (did not have a clue about them) but she was kind t...

Hi BZ Sorry for this late welcome... I am also ET Jak2+ and was diagnosed in early 2019 though my platelets were already a little high since 2016...I’m on aspirin once a day and still working full time. My platelets range from 600 to 800 and currently at 645 though 2 months ago it was 780... My symp...

Hello all I am also ET Jak2+ and is very hesitant to get vaccinated with AZ as I’m over 50 though my Haems (I am seeing two at the moment) said that it is fine. There is a very small risk compared to the greater risk of COVID... Was so surprised today to receive an email advising me that I am eligib...

Hey Jaqi, I felt the same when I was told that I had ET/JAK2 and that I had to take HU...it works for a lot of people I heard but not to some. It has different effect on people. I was 55 when I was diagnosed in 2019. With Prof M’s fee, I paid the whole fee (not that high) and I claimed from Medicare...

Hi Jaqi My appointment went well with Prof Manoharan. He seemed well informed about MPN so I will stay with him. I was diagnosed with JAK2 ET in February 2019, I was told by my first Haem to take HU but I declined. I was then placed on aspirin 2x a day. I am now on 1 aspirin a day because when I spo...

Thanks all for your replies... The blood test is called “Whole blood platelet lumi-aggregometry” which is used to identify patients who are at risk for thrombosis or bleeding attributable to platelet hyperactivity...My haem said he wants to know first whether my current medication is enough to preve...

Hi all, It has been a while since my last post. I was diagnosed with MPNU JAK2+ in February 2019, I declined to take hydra when my Haem told me to do so...I was mid fifties and my symptoms include tinnitus and easily getting tired and breathless when doing activities, I also suffer from sinusitis bu...

Wishing you all the best Warwick...will say a prayer for you...take care and God bless!!

Hi Merry, Stephen and Gary Thanks for the welcome... Working 5 days a week at the moment but I will try to catch up with you... I’m JAK2+ Confirmed by BMB... I haven’t heard CALr...what is it? Just had blood test and waiting for results.. will see the specialist early August. Will do another blood t...

hope this is all true I am taking vitamin D myself for 5 years now!!!

Thanks again Steven. I have mentioned tinnitus to my Haema (both the previous and the current one I have) but they haven’t said anything about it. But I will ask again in my next visit. I think I have slight characteristics of all MPN types and that is why they put me under unclassified. My last pla...

Hi all Just recently joined in. Thanks Steven. I have just been diagnosed with MPN. At first my Haema thought ET but after BMB, it is now unclassified. My blood platelets were increasing every time I had my routine blood test so the trip to the Haematologist and the findings. On aspirin 2/day...Hydr...