MATEs FORUM

: D Hello to you all.. well I feel fortunate to have found my way to this forum and be able to connect with you all.
I’m Gail , 70 yo and live in Melbourne. Was diagnosed with ET JAK 2 positive 3 weeks. Not the diagnosis I expected… so slowly getting head around it.
My platelet levels have been rising for last few years which my GP has been monitoring, started me on low dose aspirin… after last blood tests they were over the 600 mark so he referred me to haematologist. So now started on Hydrea.. big adjustment and pondering implications of it all too.
I have known in myself things were not quite right.. fatigue has plagued me for quite a while.. thinking it maybe it was just my age.. so I decided to retire end of 2021.
And now here I am… trying to learn and gather as much knowledge as I can.. have read so much. I do have a medical science background but not in haematology… so still learning as I go. And trying not to stay positive about everything.
Also I’m heading off overseas to UK in 2 weeks. Bit anxious about it but GP has given me blood thinners to take along with lots of good advice.
Look forward to hearing others journeys and any advice. I’m looking at this at just another condition I deal with

Greetings from MATES MPN Forum Gail...

My name is Steve, among other things I am MATES Admin.

My diagnosis (Dx) was in 2016. I am now Post ET / MF, my "Driver" mutation (unlike yours) is CALR Type 2. My Next Generation Sequencing (NGS), also revealed that I have a potentially poorer prognosis based upon the high-risk mutation 'ASXL1+', and just to round it all out, I also have another blood condition known as Von Willebrands Syndrome (VWS), which means in my own case that my blood clots more easily. CALR 2, means my Platelets are always rather nasty & on the high side, (700s – 1M). Unfortunately for me, it places me at risk of having a Transient Ischemic Attack (TIA), had a few of those already... Not very nice!

Gail, there are quite a few others here that were also originally started on Hydrea' (HU). Don't wish to alarm you, however, I would suggest that you might have a talk w/ a dedicated MPN Specialist about a possible Med's change to Pegasys' Interferon, because according to the results of many of the other MPN patients here on MATES, they all tend to be having better outcomes on Pegyasys'. Having said that, many of them, (including myself) originally started w/ HU.

Katie, would be good for you to have a chat w/ as would Warwick, because both have had huge problems w/ HU before ultimately changing their Med's.
Mark, has extraordinary exemplary results on Peg' and last I heard was having his injections Six (6) weeks apart. Mark has also travelled abroad many times, and will be doing so again very shortly I believe...

Not sure which doctor you might be seeing in Victoria (?) Dr Kate Burbury is at Peter MAC Cancer Foundation, (one of the few MPN Specialists in Australia), in my view...

However, on the Central Coast of NSW, is another MPN Specialist who particularly favours Pegasys' Interferon. Her name is Dr Cecily Forsyth. Most of our MATES members are patients through her rooms in Gosford, but I believe that Tele' Consults might also be possible too...

Gail, I will let other members know we have a new MATES member waiting to be welcomed aboard shortly...

In the meantime, please always feel free to ask as many questions as you like, and I shall do my best to answers them.

We also have a "Virtual" Cafe Catchup, every Six (6) weeks if you wish to come and meet a few more faces from MATES. The next scheduled MATES Meeting is On MATES Forum, for Sunday 27 August between 6-8PM.

Hope to see you there Gail...

Best wishes

Steve

Hello Gail,

My name is Katie. I was diagnosed with ET, Jak2 positive in 2005. I am 82 years old so have had a good innings!

I started off taking HU but slowly it was increased quite considerably as my platelets kept elevating.I coped quite well at first other than awful mouth ulcers.
After several years on HU, it became so toxic I developed quite a serious leg ulcer. It was at this point I changed my haematologist to Dr Cecily Forsyth.

Having tried several drugs since, I am now on Peg interferon and have to inject myself once a week.
I am still in the land of the living and would be delighted to talk to you if I can help in any way.
Steve will let you have my phone number as we do not post numbers on the forum for obvious reasons.

Steve is always there to help out with any problems so please don’t hesitate to ask.
Perhaps we can meet up at the next ‘Coffee Catchup?’

Best wishes,
Kate

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 referred to A/Prof Ilona Cunningham at Concord Hospital.

I was diagnosed with ET and later CALR+. I don't know if I'm Type 1 or Type 2 because it was the early days of that test.

After my platelets exceeded 1000 I was put on Hydroxyurea, starting at 1 tablet and now, about 11 years later, I am on 4 tablets daily.

I have no obviously symptoms from ET nor side affects from HU. Later I was transferred from Dr Cunningham to Dr Nicole Wong Doo.

So far so good. But lately the 4 tablets is also knocking my white and red blood cells too low and Dr Wong Doo mentioned I may need to transition to Pegasys. I know there are a lot of fans of Pegasys but it threw me into a spin (and my first ET related anxiety). I travel a lot to interesting places often for 6 months at a time and the thought of travelling with sharps, drugs, cooling equipment, airport security, hotel fridges of varying effectiveness, tropical heat, the quantity of drugs needed for 6 months and the associated customs paperwork and the cost of replacing drugs should they spoil was complexity I really don't want to manage.

I'm now seeking alternative views on switching to Pegasys and I'm slowly getting my ahead around the idea. I'm super excited about the soon-to-run trials of the CALR antibodies and will discuss with my specialist when to jump on board - I suspect the right answer is not yet. Is it sensible to stay on HU until Phase 2 of one of the trials???

Anyway - this latest development in my story has lead me to read lots of medical papers (including learning a whole new jargon) and other information sources (such as MPN Mates) to better understand my conditions and the implications of medication options.

I'm pleased to be here and look forward to contribution to the community.

Hi Peter,

Sadly, I am most unwell w/ a bout of COVID atm...

Please use the Link below to locate the Radio Button (Top Left) on MATES FORUM Page, to Commence your own NEW TOPIC
This Link will guide you there...

viewforum.php?f=3&sid=eabf4915974395ebecaf395a0a7c535f

Your POST will most Likely be Lost whenever you tag onto someone else's POST etc...

I will Provide you w/ a Proper WELCOME TO MATES Email, ASAP...

Please understand...

I have read your Post, I can empathise w/ you completely... However, Mark, (a Committe Member), currently takes his Pegasys' once every Six (6) weeks now I think(?) At one stage was out to Eight week intervals...

Please recreate you POST as a NEW TOPIC & I will then Reset The Page so that it comes up as our Last POST etc...

Steve

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.