ET or MF?

[AndyT]

I was pleased with results at my 3-monthly review on Friday - platelets 310, neutrophils 2.4, WBC 4+ and other counts all in range.

I asked if we could try extending the interval between Pegasys injections to 4 weeks, which my haem is happy with, so I will try 60mcg every 4 weeks and see how that goes. Total dosage over 12 weeks remains the same (was 45mcg every 3 weeks) and it saves 1 syringe per quarter, so I'm doing my bit for the NHS budget too..!

Finally got confirmation that my CALR mutation is type 2, insertion, which generally seems to be good news but also had an interesting discussion about whether CALR+ ET is actually ET or could be pre-fibrotic PMF, progression of which can be halted by Peg - as my haem said “we’ll hopefully know more about that in 5 years time” - I'm hoping it may be a bit sooner than that..!

As attached I've also finally got round to charting my counts over the last 15 or so years - it doesn't tell me anything I didn't already know but it's reassuring to see the sudden drop in November 2015 once I started Pegasys and that it has been maintained - the clinic I attend now has 110 patients responding well to Pegasys.

[mhos61]

Hi Andy,

that’s fantastic news. This will give hope to so many. Hope you continue to reap the benefits.

Mary x

[Rachelthepotter]

Hi Andy. Delighted you are doing so well What an informative graph- Pehasys does seem go be having a very worth while effect.

[JediReject]

Seems good news and I like the way you are monitoring your counts andt working with your Hem to get your doses right. Its a good thing to take some control over your MPN, I used to like to do that and still do discuss my treatment options post SCT. Mind you I had a chuckle at that 5 years quote , hopefully you will know before then if things do move on.

I'm pleased things are steady for you , long may it continue. Take care

Chris

[AndyT in reply to JediReject]

Thanks Chris - I’m pleased to have a haem who is open and honest with me.

Even if “we don’t know yet” isn’t the most reassuring of answers I prefer to know that’s the case and to be able to discuss different options.

In some ways another 5 years doesn’t seem that long after 15, but hopefully it will be quicker than that as the pace of research increases.

Hope things continue well for you - from speaking to others I know SCT can be very tough but the outcome is worth it.

Cheers

Andy

[jane13]

nice charts!

[AndyT in reply to jane13]

Thanks. My first ever chart in Excel - easier than I thought..! 😂

[Wyebird]

Hi Andy I’m really interested in your pos. I’m Calr ET. I didn’t know about type 2.

How many toes are there? Also your injections? Are they painful. Did you used to take H. I feel my leathery is getting worse. What’s the criteria to take Peg?

So glad your platelets are good. Your post was sounding quite positive. I’m on 17 tablets a week and mine are 370 +. I’m always anaemic. Does Peg help with your Hb reading.?

[AndyT in reply to Wyebird]

I only heard about type 1 & 2 recently and a simple question to my specialist (when I remembered to ask it!) gave me the answer. It should be on your test results.

There are just the 2 types (1=deletion 2=insertion) at present but I guess they may discover more and/or subtypes soon!

I was given choice of Peg or HU, so decided to try Peg and it’s worked well for me but I know others respond well to HU too.

Like all cytoreductive treatments Peg can suppress all blood cell types - my red count and Hb have been fine but white cells have got a bit low at times, hence experimenting with different dosages & intervals.

If HU works well for you you may want to keep with it but there’s no harm in discussing other options with your doctors.

[Wyebird in reply to AndyT]

Thank you so much. I will discuss. Are the injections like epi pens? Don’t think I could cope otherwise.

[AndyT in reply to Wyebird]

They are regular type pre-filled syringes but easy to self-administer after an initial demo from a nurse.

[Susana7]

Fantastic Andy - delighted for you! If your counts hold with monthly injections on a maintenance dose, I would have thought you would be considered in haematological remission. I started Peg soon after my PV diagnosis with similarly great results, now injecting 45mcg fortnightly after 2.5 years, and hoping for even longer lengths between injection in time. There are several of us on Pegasys in my local clinic too, with great results. I am so grateful to interferon and my haemos for suggesting it! All the best, Susana x

[tessa46]

Great news Andy, Pegasys seems to be working well for you. I am also doing well on it, my platelets are down to 328 (were 925 when I started Pegasys in September 2017). I am ET Jak2 and on 45mcg weekly and my consultant is planning to redo the Jak2 test in September , when I have been on it a year, to see if it has had any impact on the allele burden (the % of cells that have mutated). If so, I may be able to space out the injections. Many thanks for your advice last year, much appreciated. Tessa

[AndyT in reply to tessa46]

Hi Tessa - glad to hear it’s working well for you too 😀 Andy

[Lab-Rat]

So pleased for you Andy. According to the latest WHO guidelines that Rachel posted (journal article by Barbui et al. 2018) the authors describe gene testing+BMB for JAK2 ET or CALR ET to discriminate between true ET and pre-MF. Makes one wonder for those cases of ET transforming to MF (supposedly rare) perhaps they never were ET to start with, but were pre-MF all along.

[AndyT in reply to Lab-Rat]

Thanks Yvettenaude - I’ll go back and re-read that article again - just when I thought I had some answers more questions arise..!

[Joybard]

Great new Andy. Thanks for sharing this.

[stillkicking]

Hi Andy,

Glad to see Pegasys so effective for you, and do hope you are able to extend the interval to 4 weeks. Interesting for me to read of Peg helping with ET CALR as my haematologist gave me the impression that interferon only helped those with JAK2. I had a feeling she was wrong at the time, but it is hard to argue with a senior doctor in a white coat!

Best Wishes, Peter