MATEs FORUM

Hi MaccaMum, So sorry to hear your distress. I was diagnosed when I was 17 with ET too with platelets in the millions. I’m now in my early 50’s. For a long time I was monitored with no treatment and have largely been symptom free. I remember at diagnosis that my parents were much more freaked out th...

Hi Steve, Glad you managed to get jabbed with a vaccine that does not pose a clot risk to add to your other risk factors. I had my Pfizer jabs quite early on after having discussions with the National Covid Hotline and health SA and convincing them that it should be made available to people with an ...

Hi All, Just a quick update. I have had both my Pfizer jabs with a good body reaction- flat, tired, sl diarrhea for about a day (so should translate into a good immune response). I am not on any methotrexate or any other cytoreductive meds so I expected a good immune response. Had the last jab about...

Welcome Sue. There are a lot of people on here who have years of experience balancing ET, PV and MF so I’m sure you’ll find lots of useful info from all the various experiences. Sometimes I find it’s just comforting to hear that the symptoms I notice are also shared by others so I know it’s ‘normal’...

Hi Warwick, Wow, what a ride you have been having. I've been following your story through Steve's MPN site. It sounds like your body has been going through the wars with its new marrow cell inhabitants but hopefully the biopsy results showing all donor cells is an encouraging sign that the squatters...

Hi Misty, Although AZ is the only vaccine listed for over 50's if you have a good reason to switch to Pfizer and support of your GP with a letter then they are willing to listen to reason and will permit Pfizer for those at higher risk of clotting. I have tested this and managed to get Pfizer even t...

Hi Merry,
Good plan. Yes while we are doing well in Aust so far things could change rapidly so I was very keen to get vaccinated as soon as possible but like you I wanted to avoid anything that was linked with an increased risk of clotting. Good luck with your Heamatologist spot.
Cheers,
SilverET

Hi Blood Zero, I am also ET Jak 2+. Was diagnosed at 17 in the late 80’s with counts like yours. Have sailed on pretty well since then with the odd clotting adventure that has caused subsequent issues but I generally feel ok. I have reduced my hours of work a little in the last few years as I’m star...

Hi Mark and Merry, I am also an advocate for getting vaccinated if possible. I have had two previous clotting events so was not keen on AZ but have managed to get Pfizer first dose. So far so good. They seem pretty good at listening to people with real reasons to swap vaccines which is good so hopef...

Hi Guys, Sorry about the delay in reply but I have been investigating possibilities for us in the vaccine world. I have just managed to get myself the Pfizer vaccine (even though I am over 50) due to ET and my increased risk and history of clotting. So after much phoning around to National Covid Hot...

Hi All, I hope everyone is travelling OK. And a big congratulations to Steve for his ride to Coffs. I do not know how you can spend that much time in the saddle and still walk. Crazy and amazing. Has anyone received their Covid vaccine yet and if so did you have Pfizer or Astra Zeneca? My GP has rec...

Hi Steve, I was diagnosed at 17 as you know. I often think that I would not have been diagnosed at all until very recently (age 50) as I have had very few symptoms that would have led to investigation even though my platelets were in the millions. My MPN was found because I worked in a lab for work ...

Thanks, Steve. Always good to hear what criteria the experts use to make treatment decisions as I'm not sure this is always clear to the patients when they visit their docs. Hope you are doing OK at the moment.

Cheers,
SilverET

Hi All, I hope everyone is trucking along OK at the moment and making the most out of life as it is. Monash Uni have been working on a new Anti-platelet drug with reduced bleeding risks that has looked very promising in mice and is now going to human trials. The drug changes the way the platelet mem...

Wow! What an amazing story and ballsy recovery, Jedi! Thanks for sharing this. I think the thing that stands out for me is your comments at the end about not regretting having the SCT even though it resulted in a severe rejection reaction that you had to overcome. I have been reading about how patie...

Thanks for this Steve. Our country seems very slow to treat this virus seriously to protect the public and especially vulnerable people. It is great to have info from elsewhere that seems to be much more up to date than we currently are.
Stay virus free MPNers.
SilverET

Hi Annie, Thanks for sharing the talks at Peter Mac. I am in Adelaide so it was a great way to hear what the specialists there had to say on the latest approaches to treatment and research in MPNs while not being able to attend in person. My newly found Haematologist with an actual interest in clott...

Nice work, Steve and team! How does one become a member and pay membership to go to the cause?
I'm sure it's all on your website somewhere but I'm being lazy. Sorry.

Cheers,
SilverET

Wow! That's really ineresting and kind of hard to think of a mechanism of action. Except that maybe once a clot has begun the different surface markers on the blood cells of people who are A, B or AB might have tertiary structures that make them more sticky. After all the bllod typing test relies on...

Hi Steve. My understanding is that she is currently at Westmead. We will see how it goes. Anyway good news for any Tassie folk who need clotting expertise.
Cheers for now, SilverET

Glad to hear to are still cracking.

👍 You are doing a great job, Steve just by running this forum. Even if your big ride never eventuates and more research doesn’t happen having other people in a similar position to run things past is the best support I could ever get. And your cycling is already making you the healthiest version of y...

Hi all, Hope everyone had a great Christmas and New Year celebration. I saw my haematologist today and had positive results from last bloods and have been feeling more me. The bad news for me is that my Haematologist with an interest in thrombosis and a good head on his shoulders is moving to Launce...

Hi David, I have never suffered from swelling with my MPN until now that I have started on blood pressure medications. This is a very common things with lots of the BP meds so check with your Doc and they may be able to alter your doses or type of meds if it is a problem. The only clot I have had in...

Thanks Steve. I intend to try and have a relaxing Christmas break and maybe even get this running happening properly.
Cheers,
SilverET

Hi Steve,

Not bad at all. That is a great early Christmas present. I hope it continues for you and it's great to hear that you are feeling mentally positive. A hard thing to do sometimes. Keep up the good work and you never know the fatigue may settle down as things stabilise.

Cheers,
SilverET

Hey Socrates 8, That’s also a great story and I’m glad you ended up sticking it to that English teacher by teaching English yourself. I have three fave numbers. One of them is the number 8. It was my favourite childhood age. I like when life does things like that. Strange coincidences that make ever...

I could ask the same thing, Socrates 8. I guess when I needed a pseudonym I considered that I wasn't a gold level MPN'er but I was at silver level and my particular flavour of MPN is ET. Silver is my favourite jewellery metal and I have a Russian Blue cat who is silver in colour and hence called Sil...

Hi Steve, Just a thought. If you suspect your back pain may be exercise related have you tried some stretches called the pigeon poses? I get some back/ hip pain that is actually from tight hamstrings and pressure on a nerve near the pili formis muscle. Really common for runners and I believe cyclist...

Hi Steve, Sounds like your treatment is working for you so far which is great news. And kudos on your ride. That’s a huge effort. I hope you have a really comfortable saddle. My bloke gave you the nod when I told him your ride time. Thanks for letting me know about the other SA mpn person. I’ll leav...