New oncologist new diagnosis

[MaryELWoods]

I saw a new oncologist yesterday and he believes I have ET AND PV. He wants me to start pegylated interferon soon. Believes it can "turn off" the JAK2 switch.

Would love to hear your experiences with Pegasys ...

[Susana7]

Dear Mary,

You cannot have a diagnosis of ET AND PV. One of the requirements on the WHO diagnostic criteria for ET is ruling out meeting the criteria for PV:

mpnconnect.com/pdf/who-diag...

You can have PV with high platelets, many people do, I have that myself. And I have been on Pegasys for 2 years with excellent results! My bloods are all normal now. I started on 90mcg/week, then reduced to 45mcg/week, and now am on 45mcg every 2 weeks. No side effects at this dose. I had some hair loss, sore mouth and dehydration tendency at the higher dose, but all minor. I use EMLA cream on the injection site to numb it! Good luck. Susana x

[MaryELWoods in reply to Susana7]

Thanks. Still really new to this.

[Susana7 in reply to MaryELWoods]

It is worth visiting an MPN expert if you can. These are rare diseases and many doctors are not very familiar with MPNs or the WHO diagnostic criteria. X

[Brook04]

My partner has pv,et ,mf , cml,his heamatologist says its a circle and he sits in between them all she says its rare of the rare to show all signs of these. He has been on imterferon alpha for over a year now and is doing well x

[AndyT]

Hi Mary - I have ET but understand that in some cases what was previously diagnosed as ET can be early stage PV - I guess it may depend whether both your platelets and red cells are raised.

I've been on Pegasys for over 2 years now and it works very well to control my platelets with minimal side effects.

Good luck.

Andy

[MaryELWoods]

Thanks, Andy!

[Angelinagaffer]

I've been diagnosed with PV and ET so the diagnosis does exist , I only take aspirin and hydrocarbonide