MATEs FORUM

Yesterday I read a release from Pharma regarding Pegasys availability. Previously it was understood that the shortage would last until mid 2025. Now they are saying that this is not the case but it will be mid 2026 before supplies will be available. I spoke to Dr Forsyth and she had not seen the pre...

Thank you so much Steve for tonight’s catch up with Cecily. She is an absolute gem and I am so grateful that you originally suggested I see her. How wonderful she is to give her time to us and to listen and answer so thoughtfully. I was keen to learn more about the Peg shortage and have had no issue...

Hi Allan, Thanks for taking the time to reply. I guess we’ll have to just “bite the bullet” and hope that we don’t need them but have the peace of mind that we are able to look after ourselves if necessary. All being well we have another trip planned for next year so perhaps a long expiry date on th...

Thank you so much Steve for doing that.
Hard to know what to do . It is a large cost but as friend said “spend the kids inheritance “and make sure we are safe .
Best wishes
Rosie

Good morning everyone, I know and fully understand that this is a first world problem but perhaps others have had this issue and can advise me. Had my 3 monthly check with my haematologist and when she discovered that I was travelling to Fiji next month (outer Yasawa island) she wants me to take ant...

Welcome Carmel, So sorry to hear about your diagnosis. I can’t imagine what you’re going through being faced with this scary scenario at such a young age. The support you will receive here is real and helps to “normalise” what you are feeling. Steve is a font of knowledge and is very happy to share ...

Good evening all, Unfortunately I’ll be on the journey north that weekend. Look forward to the next meeting. Stay safe everyone. Rosie Quick Reply for Rosie from Steve: Hi Rosie... :-D I'm really sorry that I don't seem to be able to make this all workout so you could join us this time around, (for ...

Hi Steve It really is difficult trying to arrange a time and venue to suit everyone. Unfortunately Sunday 17th April won’t work for me and I suspect others will be the same. I’m pretty sure I’ll be chocolate hunting and eating as it’s Easter Sunday. 🐣 It would be lovely (Sydney weather permitting) t...

Sadly that date won’t work for me as we are off to the deep north.
Be in Queensland until 12th May.
It’s always difficult to have a date suitable for everyone.
Hopefully I’ll be around for the next catch up.
Keep well all,
Rosie

I would love to be there for “catch up “.
Any idea when this might happen ?
St Ives isn’t too far for me….coming from Mosman.
Excited to meet others with same/similar issues.
Rosie

Thanks Steve.
Saw haematologist today and it was decided not to do anything until after next FBC in case this was just an aberration ! BP sky high so I must have really been stressed.
Maybe I should start meditating or drinking more GnTs
Rosie

Well I had 4th jab - booster - 3 weeks ago. Now had AZ, Pfizer and Moderna. No side effects, in fact my arm wasn’t as sore as it had been with Pfizer. Now this week my bloods have gone haywire. WCC has been very low but not shot up to the upper limits ! HCT elevated and increased platelets too. Seei...

Hi everyone Hope all are keeping well and safe and dodging Omicron ! Wondering if anyone has had their fourth vaccine yet ? I had my 3rd in October and I know from UK site Healthunlocked that the fourth jab is happening after 90 days. I definitely don’t want to test the water and find out how Omicro...

Just been reading “Health unlocked” forum and members there have been receiving emails/letters from the NHS advisory that they are to be sent PCR test kits to use if they develop Covid symptoms. This will give them access to antiviral treatments. I’m very impressed that “big brother” knows who is th...

Hi all, Results of BMB today and consultation with Dr Forsyth. Indeed I do have PV (not ET as first diagnosed) with small amount of scarring but as my sample was clotted and also artifacted , not precise, I am able to continue with my current dosage of Peg 45mcg weekly for the present time. I am so ...

Hi All, Latest after my long consult with Dr Forsyth is this…. BMB and spleen and liver scans next week . Interestingly she thinks I may be PV not ET and that this was evident in my bloods in 2018. Could have been the cause of my infarct !!! I’m feeling pretty annoyed that Prof Ward dismissed all my...

Hi everyone Just to let you know that my GP was completely on the ball. Had my 3rd primary dose yesterday. Even though I had AZ for the first two, I was given Pfizer as it is thought that the combination provides the best immunity. Sore arm today but I’m so so happy ! Good luck to all in obtaining t...

Thanks Kate for your kind reply.
I’ve just this moment secured an appointment with Dr Forsyth.
Huge sigh of relief !!
It will be great to consult with someone who understands MPNs.
Just the fact that they’ve contacted me so promptly speaks volumes.
Roll on October 18.
Rosie 🥰……happy

Thank you so much Steve and Mark. I will try her rooms and see if there’s a possibility of consulting her. I watched a presentation by Dr Forsyth and was very impressed. It’s such a shame that MPNs aren’t “sexy” or perhaps there’d be other haemos specialising ! My Peg dosage was reduced this week to...

Hi everyone I’d love some opinions from others. Had my consultation via telephone with my haematologist yesterday. I must say it’s left me feeling very uncomfortable. He seemed disinterested and I felt too dismissive of my questions. I had a week ago, knowing that face to face wouldn’t be possible, ...

Thank you everyone for your wonderful support. Steve, you really are a font of knowledge on MPN …….thank you. I have heard about the doctor on the central coast and I will consider an appointment. Prof Ward lists his among his specialties MPN and as he is at Sydney Uni and the Kolling Institute I wi...

Thanks for replying Steve and Katie. Steve I came across this site as I was searching for more information on this diagnosis- and so happy that I did. It makes me realise just how much there is to learn and understand about MPN. This is really a strange journey to be suddenly thrust on, particularly...

Hi everyone I was diagnosed 3 months ago ET JAK2 + …….never heard of MPN until this time. I decided to get 2nd opinion after first haematologist prescribed HU and although he was very nice , did not explain my condition completely and on reflection I perhaps didn’t know the correct questions to be a...