Greetings from another new member M61 ET CALR+

[sydunipete]

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 obvious 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 to 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 contributing to the community.

[MPN-MATE Admin]

Hey again Pete...

Sorry I am still quite unwell atm...

Just wanted to say that I am glad you found my messages in reply... Hopefully, I will be back to normal within a week... (Fingers crossed!)

I'll talk more then...

In the interim, hopefully a few of the others, (if they are back from there holidays etc...), might chime in too to Welcome you to MATES...

Best wishes

Steve
MPN-MATE Admin

[Kinsale]

Hi Pete, I’m Mark, 65 and have ET jak2+, diagnosed in sept 2014 and was on HU for two years from 2016 ( not a good fit for me at all) and in 2018 was transferred to Pegasys. Peg had been fabulous for me. All my blood test results are all normal and within range, my Allele Burden is 5.9% and I’m injecting 90 micrograms every six weeks. In the past I have taken syringes overseas (you can get travel packs that have cooling blocks that keep the syringes cool for the 24 hour flight to London). The issue you regularly travel to travel to Sweden for an extended period, annd whilst you could take 4 syringes in a travel pack, staying over there for 6 months demands that you have to have a supply in Sweden. This can be difficult - in 2018 whilst on holiday, I had to be admitted to the Royal Bristol Infirmary in the UK. Pegasys wasn’t available in the UK and whilst I was in hospital they really wanted to see my Pegasys syringes( as if they were a novelty ). I suggest you talk to your haematologist re the possibility/difficulty in establishing a supply of Pegasys in Sweden. Peg is definitely a good drug in my view and I’m sure there must be a precedent re non Swedish residents accessing life saving drugs.
Cheers
Mark

[KatieB]

Hello Pete,

Welcome to the forum. There are not a huge number of us but we do try to find the answer to questions posed by MPNers.

I am post ET/MF and was on Peg for about 2 years. I thought it was great but sadly it stopped working for me. I seem to have quite a prolific disease. I am now on Rux which is in tablet form.

I do think you may have a bit of a problem with your long visits to other countries and feel I am not able to add anything to what Mark has suggested. I do feel however in your special circumstances you might be better with medication in tablet form. Has your specialist suggested Anagrelide?
Unfortunately Rux is only available here in Australia if you have progressed to MF as it costs about $4,800 a month!

Do hope you find an answer. Please do let us know,
Possibly you could join us at our Coffee Catchup next Sunday? (On line of course.)

Best wishes,
Katie

[Alkemist]

Hi Pete
I am also ET/CALR. I was diagnosed in 2006 and was on Hydrea until 2019. It controlled my platelets initially but I experienced numerous skin cancers (bcc and scc) and a recurring ankle ulcer. Eventually I developed cyclical thrombocytosis but fortunately Pegasys became available on the PBS and I have been on that for over 4 years. It has been good for me and my platelets are well controlled.
If you were not travelling so much I think Pegasys would be the way to go. 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 monitoring your blood when overseas? Perhaps you could discuss with your specialist? I think travelling with Pegasys in a cool pack is fairly straightforward and airport security are used to medical syringes and needles.
Hope this helps
Al

[sydunipete]

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 monitoring your blood when overseas?
Al

Thanks Al. I'm meeting with a new specialist in a few weeks time and will probably decide to transition to Pegasys after my next trip. That will give me at least 6 months, probably 7 of being closely monitored in Australia before departing again. It seems that taking a month or two's supply of pegasys overseas isn't too difficult logistically but you're right any change between peg and HU would require more monitoring than if the situation was stable.

For last 8 years or so I do quarterly blood tests and specialist appointments whilst in Australia, we make big adjustments if needed when I am early in a stay here with the aim of setting myself up with a dose that should be fine for the 6 months or so I am over there. Twice I had to get blood tests in Sweden (because I was locked out of Australia during covid) and it's possible but it is a real hassle. We can talk about the Swedish medical system another day

Thanks for your thoughts.