A Conversation with an MPN Specialist: ASH Updates - Dr. Andrew Kuykendall

[hunter5582]

This is a very nice update on some of the presentations from the recent meeting of ASH from our friends at MPN Advocacy & Education International.

For those interested in the "Low & Slow" dosing for IFNs, check out the commentary at minute 40:45

youtube.com/watch?v=dpNDCVM...(Not working as expected?)

[Spanelmad]

Thank you have saved for future reference.

[mother2britton]

This was great! Thank You.

[DougyW]

Thanks really interesting. Having just started Peggy I appreciated the bit about doesing and the JAK2+ burden. I asked my Haemotologist about this but was put off. I will press again as the disease modification as a way of managing my health is what I'm interested in. I also have ASXL1 mutation which they don't seem interested in as I have no symptoms which cannot be explained by PV. I may need to ask more questions on that.

We don't have the MPN experts in the UK. I might need to put more effort into finding one in my region.

[hunter5582 in reply to DougyW]

You have some great MPN experts in the UK, just not in all regions. The same is true here in the USA and everywhere else. That is what happens with rare diseases. This list can help find a MPN expert doc. mpnforum.com/list-hem./

Not all docs are onboard with the reduction in JAK2 allele burden as a marker for treatment. You may need to be the one to set this as a goal. Your care team should be interested in the additional ASXL1 mutation since it is a risk factor for progression. I have a non-driver mutation too (NF1). That is part of why I push for disease modification /prevent progression as a primary treatment goal. It is not just about preventing thrombosis. Fortunately, my care team agrees.

[DougyW in reply to hunter5582]

Thanks Hunter. There is one closer than I thought.

[Shopgirl10128]

This is my hematologist. All three branches of my trigeminal nerve have been affected while on Pegasys. Also extremely dry eyes with a diagnosis of macular pucker. Nothing has worsened since going off meds. Only had 5 weekly injections at a low dose.

[EPguy in reply to Shopgirl10128]

Has Dr Kuykendall offered any further comments on your experience or relevant experience he's encountered with other pts?