Anyone on the INCA 033989 trial? For calr

[Joetcalr]

This is a question to our friends in North America. Is anyone on this trial which my consultant in the UK describes as like the Covid vaccine. He seems to be suggesting I might qualify for it when recruitment starts over here. I’d love to hear from anyone who’s experienced the injection and how it’s all going. Thanks Jo

[George1976]

I’m not in it but it was offered to me. I declined due to a lot of trouble with a neuropathy that came on a few years ago.

It’s not an injection, it’s an infusion you have to sit for. And if I recall correctly you have to get an infusion every two weeks, be willing to give bone marrow biopsies and accept dose escalation. You also will have some bills to pay at least here in the U.S. the research center and drug manufacturer picks up a lot of cost too.

One person I heard say she had been in it a couple months I think and her platelets were not going down.

Johnson and Johnson has a CALR trial too that I’ve heard nothing about.

[EPguy in reply to George1976]

It's surprising the trial did not consider your possible A-I condition exclusionary, but I did check the trial and it's not there. Allowing other conditions can mean the sponsor considers the trial treatment to be low risk. I'm keen to the this since MPN is exclusionary to every Sjo trial I've inquired, there are 3 near me.

All those BMBs is a catch.

The CALR trial is a dose finding and safety study. It's possible the person you heard from in the trial is getting a sub-optimal dose.

clinicaltrials.gov/study/NC...

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Interesting the ASH report found "Potent synergism between INCA033989 and the JAK1/2 inhibitor ruxolitinib " using lower doses of each. Sounds familiar re IFN/Rux. Maybe this combo will see later trials.

ashpublications.org/blood/a...

[George1976 in reply to EPguy]

Yeah BMBs are not fun.

[dbus1417]

my doc mentioned the clinical trial for the J&J CALR antibody at my most recent visit. I am interested in it and will probably try it if they have some initial success. Right now Pegasys is working ok for me and I’m going to ride that until it isn’t.

[George1976 in reply to dbus1417]

is the J&J treatment also an infusion? And yeah I’d ride out peg a while longer too as long as you are feeling good on it.

[EPguy in reply to George1976]

You bring up a good point. Many MPN pts are doing well with current Tx. So any new therapy has a high bar to success for these pts. Maybe it will start out limited to refractory pts.

A contrast to conditions that have no current Tx where any improvement has a good market.

[dbus1417 in reply to George1976]

Yes it is a monoclonal antibody drip just like the incyte, the difference with the jnj is that it uses your T cells to “pull” the mutant calr cells in and eradicate them

[George1976]

Perhaps soon there will be a test to see which CALR treatment might be best for an individual.

[Joetcalr]

thank you George, Dbus and EPguy, I’m not sure I understood much of your discussion, but thank you for engaging with it.

I’m stuck on hydroxy at the moment and feel I’m being mildly poisoned all the time so I’m looking forward to anything that’s coming down the tracks.

Best wishes to you all