High rate remission for PV

[william-Indo]

Dear all fellow MPN,

I just received news from MPN Advocacy related Combo treatment (Rux+Peg) for PV.

It show high rate of remission.

mpnadvocacy.com/high-rates-...

Cheers

[kamiilos]

Very optimistic news. Would that allow treatment discontinuation if full remission is achieved and Jak2 not detectable any more ?

[william-Indo in reply to kamiilos]

The clinical trial just finished phase II.Result is 52% remission and 12% complete remission.

In my thought, if JAK2 mutation not detectable, it call remission and if not detected after few months, it call CR

It also explained the pts whose achieve complete remission (12%), stil in remission.

It mean no medication.

Who know about it, pls explain further.

Cheers

[william-Indo in reply to william-Indo]

The efficacy much better in newly diagnosed patient

Some of the journal

[Jamesxyz in reply to william-Indo]

Very interesting.

For thoes of us in the USA on medicare, we can get either drug for $2000 for the entire year.

But if we need both I'm guessing we would have to pay full price for one?

[william-Indo in reply to Jamesxyz]

You should ask your doc or hope someone understand how to have both with $2k.

My private insurance cover it all.

Cheers

[Jamesxyz in reply to william-Indo]

In the US most of us are on medicare, so if we need both it may be a big problem.

[saltmarsh]

Thanks very much for that update. Promising for sure

[Pogm]

I take 5mg of Jakafi 2x daily as well as my biweekly dose of Besremi. I will be curious to see in my next bone marrow biopsy if my allele burden has been reduced. Last time it was checked ( 2 years ago) it was quite high: 94%. I understand that the trial was not with Besremi, but maybe similar results could occur?

[william-Indo in reply to Pogm]

I am stared Jakafi from 20mg BD +Peg 135 mcg weekly 2 years ago. Alele burden is 92%.Then continue to reduce Jakafi 5mg BD + Peg 135mcg each 8W till now

My Alele Burden down to 51% in May 2024.

Maybe the strategy was wrong.

Keep Jakafi 20mg and reduce Peg dose.

Will discuss to my doc in next visit

[ainslie in reply to william-Indo]

My expert Haem reckons both drugs do the same thing but in different ways, I’m not entirely sure I agree with that. I think your reduction in AB of around 50% in 2 years is pretty good. I might agree with you , 5mg Rux BID isn’t much whereas 135 mcg Peg is above average dose but I still think it’s going well and AB will likely continue to fall.

I know several veterans who have been as high as 240mcg Peg and AB stayed up near max so I would say enjoy your success.

[william-Indo in reply to Pogm]

Just some share.

To know about Alele burden, you just need give small amount of blood to lab.

There is no necessary to perform BMB.

Since begining of this combo treatment with new doc 2 years ago, just one BMB has done till now.

[ainslie]

one thing to add here so we all keep our feet on the ground, although blood can show AB at or near zero (implying some kind of remission) there can still be MPN in the bone marrow. That is a quote from Dr Silver.

[william-Indo in reply to ainslie]

You are correct 👍

The phase II trial doesn't show any achievement of complete molecular remission in 2 years.

Still need to see the outcome in 4-5 years.

The good news for me is I am on the right direction.

[Bluetop]

Thanks for posting.Looking good. Fingers crossed for next stage.