Change of Approach to Management of PV in UK

[DougyW]

Saw the senior Haematologist in Bristol on Friday due to the junior doctors strike. She told me Prof Harrison had done a presentation that week in which she'd advocated for regular monitoring of AB and management of the same. This could lead to a change in approach in the UK along the lines advocated by many on here. As an aside I'm restarting Peggy low & slow. Also, this forum was mentioned and praised. That says a lot to me.

[SouthSideA]

I’m not sure I follow. What is the take-away from the recent presentation you reference?

[DougyW in reply to SouthSideA]

Prof Harrison is the UK's leading MPN expert. She is now advocating for the regular monitoring of the JAK mutation levels and management of same. I believe she is also advocating for earlier management of same due to probable long term benefits. For England that mean Pegasus due to the cost of Besremi.

[SouthSideA]

Very helpful. I’ll research her work. Many thanks!

[Anouchka]

great heads up. Thanks for that. Indeed this is a great forum. Good luck moving forward. Stay well.

[LightNights]

Hi, thanks for the info. Out of interest, please will you share the name of the consultant you saw? They sound clued up, so I'm keen to try and get my bristol appts with them if at all possible. Thankyou

[ainslie]

interesting info thanks, has anyone got more info on how we can view or read what she said

[hunter5582]

That is good to hear. Dr. Harrison is a leading voice in the MPN world. Her support for the emerging support for tracking VAF will help move the science forward. Hopefully, her presentation was recorded and will be available.

Thanks for posting this encouraging news.

[DougyW in reply to hunter5582]

Can I call your attention to the 4 links below. I think you will not be surprised but interested in the content

[RoundTheWorld]

Thanks DougyW - that's all good to know!

[johoho]

Thank you for sharing this, although I have to admit that this raised concern/interest around AB fills me with fear. Since PV diagnosis in 2015, I have been considered low risk, almost asymptomatic, and up to 1 venesection a year. BMB showed no scarring . My new Haem (who is excellent) is the first to be interested in AB, and found my AB is a terrifying 80%. I don't actually know what this means but the hope is that the Ruxolitnib will reduce this. 🤞

[DougyW in reply to johoho]

I don't think anyone can tell you what 1 number means. However, Rux should get that down and as long as you tolerate the treatment that's good. I've been pushing for a repeat check and should now get that.

[ainslie in reply to johoho]

I wouldn’t use the term terrifying, I know several with PV where AB is much higher than that and so far so good 20 years on, we don’t know for sure what it does and doesn’t mean, Rux can bring it down and so can Peg for some.

[RoundTheWorld in reply to johoho]

Whereas my allele burden is 20% (from blood test) but I’ve had symptoms over several years and have had a tiny cerebral infarct. Logically reducing AB is a positive thing but it looks like it’s a part of the jigsaw rather than the whole story (or I have additional symptom causes other than the PV). Fingers crossed the proposed regular monitoring can be brought in for better understanding.

Glad you are doing well; hopefully the Rux will add more protection on a molecular level as well.

[Suenami]

Doug I appreciate your information as my hematologist sees little value in JAK2 %’s, however don’t know what AB stands for. I have trouble remembering abbreviations generally, so appreciate you getting back to me.

Sue

[RoundTheWorld in reply to Suenami]

Suename - AB is Allele Burden (ie the percentage of mutation)

[Exeter21]

Yes Claire Harrison certainly sorted my treatment brilliantly when things were rocky. Peg working great. I have such respect for her knowledge & help in our disease . Julia 👌

[DougyW in reply to Exeter21]

Restarted my Peg today. Starting on 45 everyother week. 🤞

[Exeter21]

very good. If it gets too much you can go lower . I went to 45 a month at beginning because I felt a bit spaced out in it. However I don’t notice it whatsoever now it’s a brilliant treatment. I inject in a morning just drink more water throughout day & regularly . It took over a year for platelets to come to 350 but I am healthy on that . As long as it controls everything that’s all that matters . Good luck on it. Julia 👌

[PhysAssist]

Hi DougyW,

Thank you for the very interesting information.

I just asked my local Hem/Onc MD's office for allele burden re-testing, and they said no, because they don't have any protocol for doing so.

My AB at my original Dx in 5/2022 was 48%.,and after close to 2 years on Besremi, and still getting Hct's in the upper 40's [last one was 50%], I'm very anxious to know if I've made any progress on the AB.

I may know more later in the month, since I'm going to see my MPN specialist next week.

I searched for more information from Dr. Harrison, and I found these roundtable videos that I thought were interesting, and maybe helpful, but unfortunately, I couldn't find a link to Part 1.

Part 2:

hmpgloballearningnetwork.co...

Part 3:

hmpgloballearningnetwork.co...

Part 4:

hmpgloballearningnetwork.co...

If someone can find a link to Part 1, I'd be very interested.

Best,

PA

[DougyW in reply to PhysAssist]

Thanks for finding these. A great read that would be good to get more exposure to amongst the Haemologist community. If I struggle with Peg again I'll suggest the joint Hydroxy/ really low dose Peggy route

[PhysAssist in reply to DougyW]

De nada!

...and I agree- since she [Dr. H.] is clearly preeminent in her field, her opinion should lend significant weight to requests for alternative tx strategies and rechecking AB.

Best,

PA

[RoundTheWorld in reply to PhysAssist]

Thanks v much PhysAssist. This was really interesting. I think this is the link for the first part

hmpgloballearningnetwork.co...

[DougyW in reply to RoundTheWorld]

Thanks for posting. In many ways the most interesting of the 4. Could Rux become a first line treatment in the future, should we treat with Rux or IFN earlier? Very thought provoking.

[PhysAssist in reply to RoundTheWorld]

Hi RTW,

De nada- but thank YOU, for locating Part 1.

Best,

PA

[Hollyhedge]

What is AB please?

[Hollyhedge]

OK got it now Allelle Burden tganks