MATEs FORUM

12 months ago I had my first BMB and NGS test. Just now I've received the results from my 12 month follow up BMB and NGS. No increase in blasts (still about 4%), no increase in MF (still stage 2), reduction in CALR (45.2% down to 40.3%) and reduction in TP53 (5% down to 3.8%). A new, apparently insi...

You might like to have a look at: viber - allows up to 60 members in a group video call. It's free for personal use. whatsapp - allows up to 32 members to a group video call. It's free. slack - allows "group huddles" with the Pro version - about $7 - $8 per month. All support windows deskt...

I'm post ET MF, CALR Type 1 and TP53. For 11 years I was on Hydroxyurea (HU) and doing well until 12 months ago when I took a more active interest in my condition, changed specialists and had my first BMB. About 5 months ago I changed from HU to Ruxolitinib and my dose quickly changed from 15mg twic...

The wheels of government move slowly.

I heard elsewhere that it is expected to be on PBS around December 2024.

I stumbled across this comprehensive and recent (12 Dec 24) list of ongoing clinical trials for patients with myelofibrosis. It may be of value to anybody interested in what's out there in the (near) future. https://onlinelibrary.wiley.com/doi/full/10.1002/hem3.70056?fbclid=IwY2xjawHR5MZleHRuA2FlbQI...

Steve, thanks for following through with David Ross on my behalf. Just to summarise recent discussions for the benefit of others and some of this information may be more accurate than others. The trials seem to be run by Peter Mac in Victoria and Royal Adelaide Hospital. I spoke with RAH and they we...

Hi Simon, I was just driving past Lake Cathie the other day. We live at Lake Macquarie and visited Port Macquarie for a family Christmas get together. Magic part of the world. I spent 43 years in the Army and was forced to "retire". The docs didn't like me being on Hydroxyurea (that's a lo...

Besremi would be a great alternative. Hopefully the government wheels can turn quicker than they often do. It might also be worth contacting Greg Hunt (former health minister). He's very responsive and seems to still be involved somehow in the addition of new drugs to PBS. Here's some background on ...

Steve, I'm sorry to hear that you're not travelling so well at the moment. I hope you bounce back quickly. I met with the transplant specialist and that went as expected. I'm not too keen on the idea but he was very supportive of the trials and he recommended I get in touch with them so I'm reaching...

I had a Facebook chat with somebody on the trial asking how it was going. Her response: "so far it’s going well, all other numbers apart from the ferritin [low] are looking good. My platelets went from 1.2 million to 375,000 after only 1 treatment. I’m still waiting to see my recent numbers.&qu...

Another very exciting trial underway: Extract: "...provide greater efficacy with disease modification compared to all currently approved JAK2 inhibitors, including ruxolitinib, which bind the Type I conformation of JAK2. Additionally, AJ1-11095 has been shown in preclinical studies to reverse m...

Here's a roundup of recent information on two groundbreaking CALR Antibody trials. The trials are available in Australia (but not NSW - I'm not sure if you could participate by travelling to an interstate doctor). The early results look extremely positive. NB. There are two trials - both in Phase 1 ...

Here's another video about SCT from 2021. It includes a doctor and two transplant recipients. It's close to 2 hours long and has been described as "giving hope". I found the first 30 mins fairly heavy going but I may come back for more later. https://www.youtube.com/watch?v=AHPlMGYYZJ4 MPN...

That group is the only Facebook MPN related group that I belong to. I discarded all the rest.

There was a recent discussion there about SCT. It went a little off track there at the end but it did show a few different views.

Hi Helen and welcome. I’m Peter, 62, stage 2 MF, CALR+ and TP53 (not a good one to have). I’m still fit and well but am being referred to a specialist for a SCT. I’ve been on Hydroxyurea for 11 years with no side effects but next month I join the Ruxolitinib club. Sifting through all the information...

https://www.mpnallianceaustralia.org.au/momelotinib-for-anaemic-myelofibrosis-pbs-consultation-open/?fbclid=IwZXh0bgNhZW0CMTEAAR0tKZnrsXDJxYm8lV-1XltSBum1ceZvWMZ3cN6lOGR9E7XivmIZyprVHL0_aem_R6ieH3J_-Zn2foutq6cVoQ The government is seeking submissions on adding Momelotinib to the PBS. See link above....

Thanks Steve, I’m currently in Sweden so due to timezones etc I’m unable to join the online catch up but I wish you all the best for the event. The suggestion for me to consider the ASCT came out of the blue following my BMB. I’m 62 and am yet to come to terms with exactly the implications of it all...

Welcome Craig, I was diagnosed with ET over 11 years ago at age 50. Later that was classified as CALR+ and I was on hydroxy for about 10 years gradually increasing to 4 tablets per day. I recently changed haematologists and received my first Bone Marrow Biopsy. It appears I may never have had ET, bu...

This week I saw my dermatologist and Cecily now all the test results are in. My dermatologist suggested QV wash instead of soap for the itch, and Dermol Therapy anti-itch cream. There are several types of this on the shelf in the pharmacy. (Pardon spelling, he had typical doctor's handwriting.) And ...

After, not that long ago, saying I was symptom free, over the last month or so I've been struck by continual itching on arms and legs and it's intense. Sometimes moisterizer can help - at least to the point of helping me sleep. Somebody recommended Vaseline Intensive Care. I tried an antihistamine w...

One option could be to try Pegasys while in Australia, and if you are unable to maintain a supply overseas, then revert to Hydrea. I was on both for a few months as I transitioned and I know others have done the same. However your FBC would need to be closely monitored. How do you usually manage mo...

Thanks for the tip. I'm unable to delete my reply here. Are you able to do that for me? I hope you make a speedy recovery from covid.

Greetings all. I'm a male (Peter) aged 61 living near Sydney NSW and spend approximately 6 months each year in Sweden (access to the Swedish health system is difficult for me. That's a long story.). A regular blood test with my GP back in 2012 (aged 50) showed slightly elevated platelets and I was r...

Greetings all. I'm a male (Peter) aged 61 living near Sydney NSW and spend approximately 6 months each year in Sweden (access to the Swedish health system is difficult for me. That's a long story.). A regular blood test with my GP back in 2012 (aged 50) showed slightly elevated platelets and I was r...