MATEs FORUM

Good luck with your appointment Jacqui, I hope the platelets are down! Hi again, Carmel, Firstly, it seems very odd that you’ve been diagnosed with MF without having seen the results from your BMB. I have a feeling you have ET, and you know how I feel about that 😉 (btw, I’m JAK+, too). And you migh...

Hi Everyone, My name is Carmel, I'm 38 with a 10 month old son, and I've recently been diagnosed with MF from having high platelets (740). I'm scared as I want to see my son grow up and I'm not really sure what the future holds for me. I've read some people can live a long life with this disease an...

Hello mates, i have just joined and wanted to introduce myself. Ive had ET Jak2+ since 2008 (i was 34 and av platelet count wad 1300). I have only started taking Hydroxy in 2019 because my spleen was growing to big. Now on Hydroxy and Aspirin. Platelets normalized. Platelets size and morphology not...

Hi Jacqui Thank you so much for your reply. Sorry for my delay in replying -to you, it’s been a busy few weeks! In answer to your query, I turned 57 a few days ago and was diagnosed at 50. I agree with everything you have said and have only really not chased up a BMB due to all the other health iss...

Hi Jaqi I'm pleased to see that you've received reassuring advice from Steve and Maria who both have a similar diagnosis to you, and I don't think I can add anything further as I still at the ET stage. I was diagnosed with JAK neg ET back in 2006 following increasing platelets levels and a BMB. CAL...

Merry wrote: ↑Sun May 09, 2021 9:54 am “Those who know, don’t need to be told - those who don’t know, seldom listen!”
One of my favourites in these situations!

Ha! Yes, a good one, so true, Merry. The one I posted is actually a quote a Joaquin Phoenix quote.

I’ve reached a point in my life where I don’t like to argue with anybody, if someone says 2+2 = 5, I’m like, that’s great man, have a good day.

Evening Jacqui, It’s lovely to meet you too, thanks for the kind reply.. Yes Fatigue is hard to adjust to, however you will get to know your limitations & the pre curser to a Bad Day . You will however have so many more GOOD DAYS to come.. This illness just doesn’t respect our Feelings and Want...

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❤️❤️❤️ you are the loveliest, Maria! Thank you so much for your kind words of wisdom and your generosity, that was a long message! All that time and effort, just know your sharing has not gone unappreciated, I am quite blown away. It’s been a good day 😃 I got to read your message in full, it gladden...

Hi Merry, lovely to meet you 😊. I have to say what you’ve told me worries me a little, its unfortunate that Perth is so remote in terms of specialists with knowledge in this feild but there has to be a way around it. From what I have learnt recently it is even the criteria of WHO for anyone diagnose...

So lovely to meet you, Maria. Your message was so needed and welcomed this morning. Thank you! The first day after my diagnosis it was quite surreal but by the third (yesterday) and having read about this hideous disease and it’s symptoms, well, it’s really hard to take and I feel so very sad and wo...

Thanks so much for the encouragement and taking the time and energy from your demanding life to share, Steve.
And congrats on your bewildering accomplishment!
I am still overwhelmed by fatigue so that’s all I can say atm. Do take care.

Hi everyone, it’s Jacqui here. I’ve finally got around to introducing myself here! Thanks to Steve for making this site available and I hope you are all doing as well as can be expected. I’m 62 and was diagnosed with ET jak2 in early March ‘21. The haematologist at RPA in Sydney was very blasé and w...

Hi all and welcome Jaqi 😁 You will see my response above regarding Hydrea. I also have JAK2 ET diagnosed at 51. Let me know if you have any other questions. Best Regards, Merry Hi Merry, I just wrote a long response to you but when I went to submit it I lost it because I wasn’t logged in. So I will...

KatieB wrote: ↑Sun Mar 21, 2021 12:17 pm Look forward to hearing from you Jaqi.

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 Medicar...

Hi Jaqi, Please do get my number from Steve and phone me. Leave me a message and contact number if I am not in at the time. Talked to Cecily Forsyth by Zoom yesterday and she is pleased with my progress on Peg. She is so nice and will reassure you. You do need meds to control this disease but don’t...

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 sp...

Hi Leon, My name is Katie. I have ET J+ and was diagnosed in 2005. Have been through most of the medications and am now on Peg Interferon, Steve may have mentioned that my consultant is one of the few MPN specialists in Australia. Dr Forsyth is a very highly qualified and intuitive haematologist an...

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 b...