CALR INCA033989 Antibody Trial

[George1976]

Anyone in the CALR INCA033989 antibody trial ? If so how is it going?

i have the type 2 CALR mutation and feel like i have had a terrible case of the flu almost all the time for past 3 years with weakness in my feet that could be from platelet aggregation dysfunction. I was on anagrelide for the first two years, then peg for four years. The weakness started in 2020 at same time as a mild TIA and mild cardiac issue, and same time my allele burden was on the rise up to 50% at time weakness started. Stopped weekly peg injections is when sick feeling started and 9 months later I switched to Hydrea and have slight improvement in how I feel but not much. Platelets hovering between 550k and 625k. 10 years ago I felt mostly fine and had no weakness when platelets were 1.8m.

I also have a rising MAG antibody that can attack nerves in presence of m proteins which are usually related to myeloma or mgus. But testing for those has been negative so far.

I am being offered this trial but concerned about being in it when there is so little known about side effects.

Thanks in advance for any comments or recommendations.

[dbus1417]

I have type 1 calr, but I am still only a year into treatment (on pegasys). I don’t have much advice to give unfortunately, but I do know that antibody was very promising in the lab. I thought that was only being given in phase 1 trials. Please let us know what you decide and updates on how it goes if you decide to try it.

[welshhuw]

I am not enrolled in the INCA033989 trial but I have been following the development of the antibody closely since I am also CALR Type 2. The pre-clinical and in-vitro laboratory results have been very promising with the antibody selectively blocking the CALR mutation. Hopefully the clinical results prove to be equally promising. I'm sure the research team will be able to answer any questions or concerns you may have, including with respect to the available safety data. I wish you all the very best but should you decide to participate in INCA033989 please do share your experience. I'm sure many here in the MPN community would be very interested to follow your journey and will be all wishing you well.

[dbus1417]

I’m also curious how the antibody is administered. Did your doc say?

[George1976]

Didn’t get the whole story but seems to be an infusion you have to sit for every two weeks. The trial includes different strengths of the antibodies.

[Hatchie]

Hi,

I have post ET MF. I've been on the trial now for 9 weeks now. I'm still alive and no bad side effects to speak of.

I'm still having issues with high platelets, so it's no instant cure.

[George1976]

Good to hear you’re doing well.

Any noteworthy side effects?

And have your platelets gone up?

And how do you feel overall?