MATEs FORUM

Keep on pedalling Steve Inspirational stuff! I've acquired a new young rescue dog in January - she's been good motivation to get out on walks! We had a long period with old dogs who were happy with a slow trundle around the block - it's quite a change!!

I sailed through last winter on the Vaclovir Steve, I was also on Respirim Forte as a prophylactic antibiotic and never had as much as a sniffle! When I finally came off them in Feb this year - I got a pretty minor cold the first week of March. There's no policy at Peter Mac about Fluvax while on tr...

Keep posting this stuff Steve! I've put on 8 kgs since I began my treatment for the Waldenstrom's on May Day last year. At that time I was eating voraciously and still losing weight. The chemo helped me slowly regain weight as the dietitian put my on protein shakes and told me to eat whatever I felt...

This is as good as any reason I've read to stay home!

Very happy with the pic Steve! (I wouldn't want to jinx our lovely little penguins by putting them next to me and my dodgy blood...!!)🐧😆 I found this advice reassuring on the MPN front. My lymphoma is a trickier situation, as my B lymphocytes are low from the chemo, and these are what fight viruses....

Great presentation - thanks Steve!

Ann

Thanks Steve - will do. Everything has been nuts in the last couple of weeks so I've not had the opportunity to fully catch up on all the posts.

Kind regards
Annie

Thanks Steve, great info and advice again.

If we weren't all living this - we wouldn't believe it.

Thanks Steve - very helpful info. For me - I need to be more careful due to the recent chemo for the NHL. I generally feel well, and am very fortunate to be working from home - redeployed to the Vic govt COVID-19 response as it turns out!

We live in strange and challenging times, Steve! The loss of social connection at all levels will be hard to deal with and the mental health and wellbeing challenge only beginning to emerge. It's hard to imagine how life will be at the end of all this, but we do need to hold onto our goals. To you a...

My advice would be to reach out for support from professionals looking after you and to other people who understand on forums like this one. I was originally diagnosed with ET in 2012 and have only recently started drugs to reduce my platelets. While there are some symptoms with the disease, the aim...

It's my pleasure Steve. Re-reading my posts I'm a bit repetitive, my computer is now so old I do everything on the phone which mucks up my proofing and editing. Or maybe I'm muddle headed from the MPN? 😜 Anyhoots, it's great to have people who understand to talk to! The only other person I ever knew...

Hi Alkemist, I was on yearly bloods before my appointment for the years 2012 - 2018. In that time, my platelets were pretty steady in the 600's, up until 2017, when they went back to normal and I was taken off Aspirin. At my 2018 check, my red cells had dropped into the anemic range, but they had be...

Thanks Merry & Allan You guys with an MPN should be really encouraged by the work to make clinical trials more effective and more widely available across Australia. Unfortunately - I'm not eligible for any trials, due to my co existing NHL diagnosis. Of all the news I got on April Fool's day las...

Hi everyone, Fortunately - I discovered the Mates forum through Assoc Prof Kate Burbury's talk. I've just begun treatment at Peter Mac for my MPN after originally being diagnosed by a private haematologist in 2012. I moved to Peter Mac last year when it was discovered that I also had a rare form of ...

Thanks for the welcome, Katie. I've been having a great exchange with Steve following my registration with MPN mates, so I am looking forward to both learning and contributing to the forums about this disease. Symptoms that I put down to ageing, change of life and a bit of arthritis that were eviden...

So much of this I can relate to. Thanks for posting it Steve. The second opinion I got this time last year was a game changer. Until then, I was being seen seen once a year on watch and wait by a private haematologist since a diagnosis of JAK2+ ET in 2012. - I delayed getting the second opinion by m...