MATEs FORUM

Thanks so much. Great article

Hi Craig. I’m so glad you found your way to us. Lots of lovely people with helpful advice here to assist you. I was diagnosed with ET JAK2 in 2015 and at present am coping quite well on Apixaban (blood thinner) and CBD oil. I can see that you have had some great advice from ppl who identify more clo...

Thanks, Steve. Interesting read. Hope you are feeling better. Merry

Fantastic video! What an amazing place. Congrats and huge thanks to Steve for all the work. Merry Xmas and Happy New Year to all. Love and hugs from Merry

This is awesome, Amanda! Thank you so much. I haven’t been able to get on the mat for a while now so a chair sounds much easier to achieve! Regards, Merry

That’s exciting news,Mark. Will look forward to hearing the results. Merry

Happy new year to all! Looking forward to catching up with everyone Merry

Sounds great. Really enjoy the cafe catch ups and will try to be on time next time

Good morning everyone. Hope you are all keeping well. Just wanted to wish you all a happy day on this International Day of Happiness. www.internationaldayofhappiness.net In a world where a lot of the news is on the darker side, I think it’s important to reach out with hope, love and positivity to ou...

Good morning everyone :D. A quick question (or maybe questions hehe) - how long after your third jab are you eligible for the fourth and is there a recommendation on which vaccine it should be? I have had three Pfizer jabs. Worst side effects after the second - hardly any with the third. Thanks, Mer...

I haven’t heard anything regarding 4th shots as yet. Have just had my third last weekend. As for reaching an Omicron (or any other type of) peak next week, here in WA we are only now awaiting the beginning of living with Covid with our hard border set to open on 5 February. Really not looking forwar...

I would like to wish everyone all the best for a happy and healthy 2022. I hope everyone has been able to spend time with family over the holiday season and is keeping well. Kind regards to all, Merry

Thanks for the update Steve. Will be interesting to see the results. My own Pfizer journey was a little easier here in WA but I did suffer side effects after my second dose, I believe related to a flare in inflammation of my psoriatic arthritis which caused costochondritis ie chest pain and shortnes...

Hi Rosie Welcome to the forum and apologies for not being here to welcome you sooner 🌸. I have Et Jak2+ diagnosed in 2015. My haem at the time was retiring and basically just said take an aspirin once a week and you will be fine. Unfortunately I didn’t really research MPN’s until after I had a cereb...

Hi All I have a telephone appt with my haem in a months time to discuss and I will ask for a letter so I can hopefully get the Pfizer jab. My GP wants me to talk to him first as it is the haematology dept who said I am contraindicated for the AZ vaccine. I would like to be able to get the Pfizer ASA...

Hi BloodZero. Welcome to the forum. I’m also a member of the ET Jak2+ Club. On my lunch break at the moment so not much time, just wanted to say a quick hello. Kind regards, Merry

I went to have my AstraZeneca jab yesterday. The doctor called my haematology department and they said no, I shouldn’t have it due to having a previous cerebral venous sinus thrombosis (CVST). I now need to speak to the haematologist to see if I can get the Pfizer jab. Merry

“Those who know, don’t need to be told - those who don’t know, seldom listen!”
One of my favourites in these situations!

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 issu...

Hi Jaqi Welcome to the forum and thank you for such an informative post. I live in WA and was diagnosed with ET JAK2+ back in 2015. I am under the care of a public health haematologist in Perth who I have a Telehealth appointment with every six months. I haven’t had a BMB as they have told me that w...

Well done Steve! Sterling effort from you and awareness raising is half the battle. Congratulations on completing this ride. I know you have worked so hard on making it happen and it’s a great achievement Best regards, Merry 🥳

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 Misty. Great to hear back from you. I stopped the hydrea late 2019 as I had been diagnosed with psoriatic arthritis and begun taking methotrexate for that. Methotrexate can also reduce platelets so I stopped the hydrea as it just seemed like too many pills for me and I wanted a break from the hyd...

Hi Misty. Thanks for sharing. I was interested to read about the platelet aggregation test - I don’t think I’ve had one of those... I had a venous thrombosis some years ago - probably caused by “sticky” platelets as mine haven’t been above 650. I stopped taking HU over a year ago and my platelets ha...

Thinking of you Warwick. Hope everything is going as planned. Sending best wishes, Merry

Great meeting Steve. It’s really helpful to be able to chat with other MPNers. I found I couldn’t log on to the first meeting with the link until I downloaded the Zoom app. Look forward to the next catchup. Merry

No sorry I don’t know but will be very interested. This is something I keep meaning to bring up with my haem. Merry x

Hi Leon Welcome to the Mates Forum. I’m in West Australia. No MPN specialists here. I’m Jak2 ET and see a doctor at the haematology dept at a hospital in Perth. They are just monitoring at the moment as my platelets are around 400. I stopped taking Hydrea last October and haven’t had any significant...

Morning all, I also do not often think this far into the future. I am very focussed on getting through what’s happening now and in the next few months. However, my ideal on retirement I guess would be to be near family, try my hand at some creativity like you Le5 😀, maybe some writing and pottery, a...

Wow! An inspiring tale of overcoming adversity with love, strength and good humour. Thunderbirds are GO!