Switch from HU to Pegasys - update!

[FG251]

I received an unscheduled call from my haematologist this morning to say that I’ve responded very well to PEG and that, consequently, I can now lower my weekly HU dose from 5 x 500mg to 3. Furthermore, she anticipates I can stop it altogether by the time of my next appointment, in 2 weeks’ time. So far, no adverse effects either! 🤗

[Hopetohelp]

Superb and very encouraging

[hunter5582]

HORRAY!! That is great news.

[EPguy]

That's a really quick hematological response, and great progress. If you are able to share your CBC numbers as they changed (or didn't) it would be neat to see.

I have been approved for Besremi recently and hope to have some stories soon.

[FG251 in reply to EPguy]

Unfortunately, because I’m still on HU, I can’t tell what drop in platelets can be attributed to it and what can be attributed to PEG - my haematologist couldn’t say either when I asked! They were at 381 nine days ago, down from 433 in September, when she asked me to increase the dose from 4 x 500mg to 5 per week. Still, I have a further blood test next week and then, as I posted earlier, we’ll be withdrawing the HU altogether soon, so I hope to post some more figures. Suffice it to say that all the bloods are in normal range: Hb: 146, Hct 0.43, etc., and she presumably looked at other things doctors don’t automatically share. Anyway, to have a call beginning, ‘I’m really pleased…’ is better than a slap in the face with a wet kipper, eh?

Looking forward to hearing your news on Besremi in due course. My haem did hint that the switch from PEG to Besremi would be in the pipeline, which of course would be great.

[Bluetop]

That's great! What was your reason for the switch? You don't seem to have been on a very high dose of hydroxy. Are you experiencing any side effects?

[FG251 in reply to Bluetop]

I switched because I believe that PEG is just as effective at reducing blood counts and preventing thromboses, but comes with the real possibility of molecular remission - if not a reduction in allele burden, which is suspected to play a role in disease progression in the long term, not to mention the small, but known risk of leukemic transformation and non-melanoma skin cancers with HU. Apart from some fatigue when I started on 500mg daily, I’ve thankfully had no adverse effects on HU, but I wanted to mitigate all risks, especially if my platelet count began to rise and I was asked to increase my dose again. I’m happy to have been on HU for only 14 months and hope the PEG journey continues to be smooth! As others have posted, the ‘watch and wait’ procotol for under-60s and those without previous thrombotic/haemorrhagic episodes may well prove to be misguided. Dr Richard Silver certainly believes this to be the case. After all, we don’t readily ‘watch and wait’ other cancers, do we?

[Bluetop in reply to FG251]

Thanks for that. I keep toying with the idea of a switch, but my haem isn't recommending it. (a case of don't fix it if it ain't broken), but I agree with you, there is more to it than that.

[FG251 in reply to Bluetop]

That maxim had crossed my mind, too - it’s always a tricky decision. My haematologist was happy for me to switch, which I must say came as a bit of a surprise given the cost of Pegasys. Or maybe it was my endless questions about ‘post-ET MF risk’ that induced her, in a bid to finally shut me up!

[EPguy in reply to Bluetop]

You may have seen a post from me before saying that most of us, even if nice and shiny on the surface, are indeed broken with the allele burden doing its dirty work behind the scenes.

Painting over the rust does often work just fine for a very long time if there is enough solid structure beneath. But if the rust inside can be reduced that ups the odds.

[FG251 in reply to EPguy]

Good analogy!

[Bluetop in reply to EPguy]

Yes, this is my concern. My haem would switch me to Peg. but she isn't recommending it and doesn't paint a rosy picture -eg I may have to go back onto phlebotomies, may take a long time to get the dose right, and then there are the potential side effects. She says there isn't clear evidence of the benefits of a lowered allele burden and I already have a good haematological response. She has so many patients who have done so well for so many years with hydroxy. I will push again next time. I appreciate your input.

[FG251 in reply to Bluetop]

Indeed, there are no certainties, but felt it was worth a try.

[Bluetop]

Good luck with it any way. It's looking good!

[FG251 in reply to Bluetop]

Many thanks - will post again in due course!

[Threelions]

Love hearing good news. Thanks for sharing, chuffed to bits for you.

[FG251 in reply to Threelions]

You’re very kind. Sharing is caring 🤗

[EleanorPV]

That's great. back in 2016, I had a similar quick response for my platelets but my HCT took another 8 months to react. 5 years on my blood remain stable.

[FG251 in reply to EleanorPV]

Glad to hear it. My Hct wasn’t an issue, with ET, but it’s still nice to see it within normal limits!