MATEs FORUM

Gday Craig. Sorry you are in this boat with us. I had a stem cell transplant in 2021 after having ET since 2003. I'm 51 and have 3 kids. I feel your pain with the bone pain it was crippling for me in 2019 I had recurring bouts of it to the extent my core muscles would completely lock up and I could ...

Hello MPNers Since my last post I left hospital but after 10 days 5 days at my parents house till my kids got over sniffles and 5 days at home my liver function deranged significantly again so I was readmitted to Westmead Public Hospital. Today is day 22 of my stay back at hospital I am being treate...

Hello blood 0 I was 33 when I was diagnosed with ET in 2003 and that stage they had no idea what caused it until they mapped the Human Genome in 2005 and then in 2006 I had the genetic test to demonstrate that I also was Jak2 positive in the early stages I was treated with low dose aspirin which sto...

Hello everybody I am now at day 86 post transplant and enjoyed 6 weeks at home however about 2 weeks ago I started getting some stomach issues and my liver and kidney functions have dropped write off so when I came in for my regular Monday bone marrow team clinic meeting I was told the not go home g...

Well done Steve what an effort both on the bike and the logistics before and during the ride

keep up the great work mate

Thanks for all the support its quite amazing yo have people in the UK through MPN Voive and all over the world supporting me. I am now at day 28 post trsnsplant and whilst the declaration of Engraftment day has not yet occurred my white cells are edging up. My white cells are now 0.4 and nuetrophils...

Hello Everyone I reached another milestone on Monday with my last Chemo dose. Now its a matter of topping up my platelets and red cells and keeping up the cyclosporin which is an immunosuppressive drug. They are also giving me panadol, endone, for headaches anti nasuea drugs drugs to protect my live...

Hello my MPN friends Thanks for your well wishes. Sorry for the delay getting back to you but i just worked out how to do this on my phone. I have no energy or concentration to turn on the computer. Today is plus8 ie 8 days post transplant. The next week is the toughest only 2 rounds of chemo to go....

Hello my MPN friends Thanks for your well wishes. Sorry for the delay getting back to you but i just worked out how to do this on my phone. I have no energy or concentration to turn on the computer. Today is plus8 ie 8 days post transplant. The next week is the toughest only 2 rounds of chemo to go....

Hello Katie I am going to to the coffee catchup I have had ulcers on my foot and ankle. Took 6 or so months to clear. I'm on 1500mg 3 capsules a day of hydroxurea but was on 4 capsules a day for 5 odd years. I found a honey cream really helped called bee power from mudgee anyway just one of the thin...

Thanks Steve for organising the catchup I look forward to seeing you and our mates on Saturday

Regards
Warwick

Hello there My heamotoligist always checks my ankles as they are generally swollen. He says it is quite common in mf and pv. I have had some pretty bad swelling from soccer injuries. My fingers also swell up but the progout helps break down uric acid build up generated by the breaking down of bad bl...

Couldnt agree with you more Steve

The couch often looks good but once I get moving I am usually glad I did.

Warwick

Thanks Steve
See you tomorrow

Warwick

Dear Maria and other members I am 47 I was diagnosed with ET in 2003 when I was 31. I had a blood clot in my leg when I was 27 migraines at 29 and a Dvt after a football soccer injury operation on my Achilles tendon. Even after a stint at Hornsby Hospital I was sent home with a box of Clexane inject...

Hello all

I am looking forward to meeting everyone on Sunday morning. In my 16 years with an mpn I've never spoken to or met anyone with an mpn so I will try not to get too emotional

Kind regards

Warwick

Hello Maria This is my first post I have had 12 bouts of agonising bone pain this year which lasts from 4 to 12 hours been to hospital 4 times including last week as it happened at work and scared the daylights out out of the staff who called the ambulance. The only problem as you say the hospital d...