MATEs FORUM

Hey everyone,

Thought was a really interesting article from the CSIRO, and well worth a mention – FYI

THERANOSTICS = Therapy + Diagnostics


WORKING TO TREAT ‘UNTREATABLE’ CANCERS – By Erin Haywood, 7 May 2019

Cancer remains one of the biggest causes of death in Australia. This year alone, an estimated 50,000 people nationwide will lose their lives to this complex and multifaceted disease – that’s about 140 of us each and every day.

Through a new partnership with one of Australia’s largest cancer care providers and an emerging area of science called theranostics, we’re working to develop new therapies to fight even the most ‘untreatable’ cancers, and trial them right here in Australia. The research will bring new, highly-targeted therapies to patients suffering from some of the most fatal types of cancers including brain, pancreatic, ovarian cancer and metastatic cancers. So what sets theranostics apart from conventional cancer treatments?

https://blog.csiro.au/working-to-treat- ... n=Snapshot

Best wishes

Steven

Hi Steve
Found this interesting timeline perfect, I was told exactly one year to the day yesterday Friday that I have MF...

My husband was told yesterday he has
Bladder Cancer, how advanced we will not know until he has surgery sometime during the next 2 weeks..

During that time he will have a Scan on Liver and Kidneys...

We have yet to tell the family, later today not easy to do obviously...

I'm beginning to wonder just how much more bad news can one family handle...

As I write this I realised the significance of the day, Friday 18th 2018 I had my Diagnosis last year...

Just recently discovered I have the AXSL Mutation, as you know and kindly responded to, hence hopeful of receiving Ruxolitinib as opposed to Hydroxycarbamide...

The irony of it all, I will not get any answers to my prospects of receiving Ruxolitinib until I see my local Haematologist, in July...

Just cannot get an earlier appointment, and now this situation has descended upon the household I will not have much opportunity to visit Professor Harrison at Guys, prior to my appointment in July at my local hospital.

I must just sit tight and remain hopeful for Ruxolitinib in the future ?

I have MRI booked on 19 June for myself regarding the extreme pain I am suffering...

Wow that saying, "never rains but it pours"
I'm simply feeling rather unlucky never thought I would have a CNS, now hubby has one too...

I'm happy to see the numbers are growing, this will be a a wonderful informative site with a little time...

Family and Good Friends are a wonderful source of support, companionship in our journey of life, with or without MPN's...

However having a Forum where you have total anonymity, if that is your preference is such a support, one can ask questions and express ones feelings, the inner thoughts without worrying your nearest and dearest..



I wish all my MPN Family the very best, last but not least whatever type of Cancer folk are battling with, Good Luck, stay positive.

All the Best
Maria

Hi Maria,

Wow... you certainly do have a great deal on your plate at the moment...

Where to begin...? Words might not mean a great deal right now Maria... Nevertheless, I am so sorry to learn of your husband's sad news. Try to stay as positive as is humanly possible... Yes, a very hard task to broach the subject with family too I am certain...

Naturally, I am sure that I am speaking for many people both here and in the UK, when I say that our thoughts and feelings are with you both at this very difficult moment in your shared journey...

Hopefully, you might get to see Prof. Harrison sooner than July, and if you are in a great deal of pain, I am not sure why they cannot schedule something sooner for you, seems very odd considering your symptom (pain) burden has increased along with the recent discovery of the HR mutation, AXSL1. You should aslo ask Prof. Harrison about the MIPPS scoring card for MF, maybe that will help with being prescribed Ruxolitinib. Maybe you should send a PM to Maz, and ask her if she can help arrange an appointment sooner w/ Prof. Harrison, rather than you having to wait to July... That is still quite some time off...

Maria, please make sure that you post over there in the UK too... (MPN Voice) of course, for you to gain some further support at this crucial moment from all of those people who know you, and regularly visit MPN Voice. We are still just a tiny percentage of people here in Australia at the moment. Hopefully, and as you so kindly suggest, that might all change into the future...

Right now though... you need to garner as much support as we MPN friends together might be able to provide...

Thank you for sharing your important news here Maria...

Please accept our very best wishes from MATEs and everyone here down under...

Steve