Hopefully this is not an irresponsible header since may raise false hopes, especially for those who can not tolerate Pegasys.
However the quote is from a highly respected MPN specialist today.
I saw him about 18 months ago and asked, if you were me, would you start Pegasys (I was coping on venesections at the time). He said no but he wouldn’t say I was wrong to start treatment.
Clearly a lot has happened in the meantime. Today I was asking about the future pipeline of new drugs. He said very exciting, lots going on. I asked if any sign of a possible cure. He thought more progression halting than outright cure. He is involved in a number of trials with promising initial results, especially since these trials are usually focused on the most aggressive cases.
But the kicker was that I am already on the best potential ‘cure’ drug as in it might halt progression for a lucky subset who respond well. Still not sufficient long term clinical data to prove it can halt progression for an extended period of time as opposed to temporary pause.
To repeat my opening comment, I was in two minds about posting this since some will have thyroid or depression issues that preclude Interferons and others will not tolerate the side effects nor achieve a haematological/molecular response.
However, recently there has been an increased number of posts from people considering or who have just started Pegasys.
My view is that if your Hem is willing to offer Pegasys, then worth trying to see if you get on with it. Many have no/minimal side effects. Start low and build up. Be patient, in my case my WBC can down immediately, Platelets soon after but RBC took 15 months.
I asked about the availability of Ropeginterferon, he said why change if Pegasys working for me. Said Ropeg is a different drug rather than just more refined (fewer side effects) than Peg. I had assumed a given that if Peg worked, Ropeg would be even better.