MATEs FORUM

Hey Steve, So great to see you back on the forum. Such a horrible and painful experience for you and the second one too. I have obviously spoken to you on the phone but wanted you to know that I am so sorry you are having to cope with all this and I am sure everyone else joins me in wishing you a sp...

I watched this video on Voice before you posted it Steve. I think the idea of having an App is great. As Dr Harrington says, it is only available in the UK at the moment which is a shame. He also says that they have a shortage of people with MF using it as there are fewer of us with this problem. I ...

Hi Simon, My name is Katie and I was diagnosed with ET Jak 2 in 2005. (Many years ago) I was in UK at the time but moved here to Australia to be near my family. I was very lucky to come into contact with Cecily Forsyth and she has looked after me for several years. I too, was on Peg but unfortunatel...

Hi Mitch, Welcome to the forum and hope you are able to get to know some of us on our Coffeecatchup. I was diagnosed with ET in 2005 so am an old hand at this game. I started off on HU but have changed drugs many times over the years. As I have now progressed to MF, I am on Ruxolitinib. I no longer ...

Hi Steve,

Did you mean the 8th of October for the our next coffee catchup?

Katie

Hi Sharon, Welcome to the forum and hopefully we shall meet you on our next Coffee Catchup on Sept 8th. I too started off with ET, Jak 2 many years ago in 2005. I have taken several different drugs over the years including Peg. I did quite well without too many side effects until the drug stopped be...

Hi Helen, My name is Kate and I was diagnosed with ET in 2005. Like you I have a Jak 2 mutation which was discovered the year I was diagnosed. I have taken many different drugs over the years as side effects and other problems forced changes. I took HU for many years but it finally became toxic due ...

Hello Craig, I am afraid I cannot be much help in answering your questions but wanted you to know that we shall all be supporting you whatever decision you make. I have also progressed from ET to MF and sadly I am too old to have a transplant. When I had the results of my BMP, my consultant asked me...

Hey Steve, So sorry you are still in pain after your awful accident. I am sure most of us have already contacted you and hope that you heal quickly. The loss of your bike is a different matter as we all know what an important part of your life it is. It is easy to understand your devastation and und...

Hello Pete, Welcome to the forum. There are not a huge number of us but we do try to find the answer to questions posed by MPNers. I am post ET/MF and was on Peg for about 2 years. I thought it was great but sadly it stopped working for me. I seem to have quite a prolific disease. I am now on Rux wh...

Christmas cheer to all our MPNers and supporters and thank you Steve for all your hard work this year.
A peaceful and prosperous New Year on 2024 is on the way!

Best wishes,
Katie

Brilliant effort with the ride. So pleased everything went well. Great to see Warwick looking so well and becoming the ‘male model’ for the day during the raffle prize draw. A great effort was made by all, especially you, Steve. Many thanks from all your MPNers and supporters of whom I am most certa...

Hi Amanda, Having done Yoga all my life, I was really disappointed when I finally had to give up for several health reasons. As I am 82, chair yoga would be a great idea. Unfortunately, I have very little energy as as well as having ET, I have A fib but I miss so much my flexibility. Yes please, I w...

Hey Warwick, So delighted to hear your news that you are going to the Uk to play in the ‘Walk-up Soccer World Cup.’ That is brilliant news after the long haul you have been through. I am sure you and your wife will have a great time and we shall all be rooting for you this end. Good luck from us all...

Hello Gail, My name is Katie. I was diagnosed with ET, Jak2 positive in 2005. I am 82 years old so have had a good innings! I started off taking HU but slowly it was increased quite considerably as my platelets kept elevating.I coped quite well at first other than awful mouth ulcers. After several y...

Hey Steve, So sorry to hear you have had such a rough time lately. It must have been a shock when things had been going so well. My fingers get very sore around the cuticle area and nothing seems to stop the flaking skin. However, your condition seems to be quite severe. I had no idea you had been s...

An amazing story which is heartfelt all the way through. The feeling of panic when you think you are going to die, Is just terrible. Not everyone is brave and accepting and it does seem sometimes as if those who are healthy around you, are oblivious of your feelings. However, this is a wonderful res...

Hi Allan,
Thank you for your encouraging words.
My platelets did respond originally but started to creep up again slowly. Hence the increase in my dose of Peg.
Great to hear that although it took a long time with you, things are now stable.

Best wishes,
Katie

Hi Mark,
So pleased to hear your good news. I shall keep my fingers crossed for you that you go into complete remission. It is great to hear someone has such good news.

All the best,
Katie

Hi Mark,
Delighted to hear your news and hope that it all continues in the same direction. Do keep us all posted.

Sadly my platelets are not so responsive and I have had to increase my weekly dose of peg. Still hoping for good results like you.

All best wishes to you and all our MPNers.
Katie

Happy New Year to all our MPNers!
Hope you all had a great Christmas too.
Look forward to seeing everyone at the next Coffee Catchup. Thanks for organising it Steve. Always great to hear from you.
All best wishes,
Katie

Hi Zeppelin11, My name is Katie and I too have ET. If it is any comfort to you, I was diagnosed 17 years ago and although I have had my ups and downs, I am still here! I am a patient of Dr Cecily Forsyth and am on Peg Interferon. I took HU for many years but changed over due to a leg ulcer caused th...

Hi Jodie, My name is Kate and I have ET. Welcome to the forum and sorry to hear about your leg pain. I do get pains in my bones on a regular basis but find some days worse than others. Most people with any form of MPN seem to get weird pains and symptoms, which are quite frightening at times. This i...

This is amazing! So encouraging for people with MF, especially the young patients who have years of toxic drugs ahead of them. MPN’s are fairly rare and have the added problem of few visible signs. Only a person with an MPN knows how fatigued and how much discomfort we cope with. It maybe a long way...

This is a very interesting article and explains in simple terms the various problems that affect people with MPN’s. It is comforting to know that although it is classed as cancer, it is generally speaking controllable. I often wondered if MPN’s could be hereditary. We are still not much nearer that ...

Hello MiaGrace Katie here again. I would be delighted to talk to you on the phone if you would like to. I am a patient of Cecily Forsyth and most of my consultations are done by phone. She is a very kind and helpful MPN specialist and I am sure she could help you. Over the years, I have had so many ...

Hi Mia Grace, Welcome to our forum as I am sure you will find great support and encouragement when you need it. I am like you and have ET and am Jak2 positive. I have had this condition for nearly 17 years now and have been on a number of different medications, I am now on Peg interferon and have to...

Hey Steve,

The 28th of May is a Saturday. Did you man the 29th?

Best wishes,
Katie

Hey Steve, Great catchup and so good to be able to chat in person to MPNers. I did have a problem getting in. The email link would simply not work for me so Jerry went through the forum link. Sorry I had to leave early but I did enjoy seeing you all. Late May sounds fine at this stage for me too. Be...

Hi Steve,
Was just about to say I could not make Easter Sunday!
Sunday, 24th of April would be much better for me too.
Best wishes,
Katie

Hi Katie...

Cafe Catchup Date change:

UPDATED – SUNDAY APRIL 10th, 2022 at 6PM