Ropeginterferon Alfa-2b listed as Preferred Trea... - MPN Voice

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Ropeginterferon Alfa-2b listed as Preferred Treatment in Polycythemia Vera

Manouche profile image
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The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology have been revised to include ropeginterferon alfa-2b-njft as a preferred treatment option for patients with high- and low-risk polycythemia vera, irrespective of treatment history.

onclive.com/view/nccn-guide...

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Manouche profile image
Manouche
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9 Replies
hunter5582 profile image
hunter5582

Good news to hear NCCN updated the guidelines to reflect the current research. Hopefully, thi will facilitate access to the treatment approach that man would prefer.

hunter5582 profile image
hunter5582

Good news to hear NCCN updated the guidelines to reflect the current research. Hopefully, thi will facilitate access to the treatment approach that man would prefer.

GardNerd profile image
GardNerd

This is such great news! Like Hunter, I’m hoping this makes it easier for folks to get this approved by the insurance companies. One would think so!

Roxanne22 profile image
Roxanne22

Hi - Is this just for USA not UK (at the mo') I have been watching and waiting for the last 6 years with my PV - atm just on vene and aspirin, despite my WBC being around 13-15 and my PLT approx 1100 I have been managing alright and my cell counts are stable, but I am tempted to give Besremi a try when it becomes the drug of choice for UK NHS treatment, Thanks for sharing and if you could let me know thoughts on availability, looks more promising for many of us, Sarah

ainslie profile image
ainslie in reply toRoxanne22

you might get Peg in UK if you try hard enough, some are on it and it’s almost identical to Bes, one molecule different apparently

Roxanne22 profile image
Roxanne22 in reply toainslie

Yes Ainslie I've been offered standard peg interferon, the aspect that appealed re the Besremi was only every two weeks rather than weekly, I will wait n watch with interest how this may affect the UK position, best wishes and thank you, Sarah

EPguy profile image
EPguy

Great progress seeing practice keeping up with reality. It's likely the best therapy available.

It's interesting to see different ways the data are presented some times. These details don't takeaway at all from the benefits of Bes, or the good results reported. But they do show that study sponsors are human and like to give info in a best light. Sometimes these "adjustments" can matter (not so much here) so we need to read carefully.

--

One concern I had in the result initially presented at ASH was the increased symptom score. In:

ashpublications.org/ashclin...

"Patient-reported symptoms ... were present in 9.5% of patients at baseline; by the sixth year of treatment, they were present in 15.7% of patients in the ropeginterferon alfa-2b arm compared to 20.7% of those receiving other treatments."

So symptoms increased for all, with Ropeg up by a relative 68%.

In the report at top "(symptoms) were lower in the sixth year of treatment compared with the first year from week 4"

Opposite results. Difference is the bold type parts, they selected a different starting point in the new report. All accurate but some adjustments happened to improve the reported result.

--

Another is "At six years, 20.7% of patients in the ropeginterferon group... reached allele burden of less than 1%" This is a great result, but they suddenly switched what aspect of VAF they report. Prior it was avg VAF since the results were what we like to see. But they stopped reporting the actual average VAF past year 5. That's because it rose to 12% at year 6 from 8% at Y5. I've posted this when I was on Bes.

As I noted "This is not what we want to see, but I have been expecting it based on earlier PEG data, seen in old posts".

healthunlocked.com/mpnvoice...

Pts who get to the lower VAFs tend to continue with low numbers.

--

Jamesxyz profile image
Jamesxyz

I'm trying to remember the charles dickens quote:

"Lies, damned lies, and statistics" may be appropriate here.

Jamesxyz profile image
Jamesxyz

Maybe Mark Twain, anyway you get the idea.

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