Hi Just want to update you on my journey on this clinical trial INCA 33989.
I am now at my 4th infusions and my platelets are now 337. They became normal after one dose. I was at 775 of platelets at the start of the study.
No side effects. Was on Pegasys for 15 years. I was diagnosed at 33 and now I am 54. ET CALR type 2.
That's a fabulous result!! Thank You for the update
This is great news. Thanks for sharing.
Are they suggesting you might be able to get a lasting remission at some point?
Hi it is too soon to tell we will know more when I do another BMB
Hi it is too soon to say but in the criteria of the study they will look for people who had complete response, partial response so I think it is because they are hypothetically expecting responses
Glad to hear about the positive results. INCA 33989 is a promising step forward in MPN treatment. Thank you for participating in the clinical trial.
this is all so great. Thanks for sharing and please continue with the updates! 🥳
Thanks for this encouraging update! Keep going!
Wonderful news! Always great to hear positive results
Thankyou for sharing with us, I'm about to start the same trial here in Australia, have you had any initial side effects? Im 60, Calr 2, for 18 years , my platlets have always been volitile, off drugs for 6 weeks I hit 1.6 million and climbing. History, hydroxyurea , anagrelide, Bomademstat.
Hi, is the trial only for those who have carl?
Yes, sure is, I never thought I'd love to see the day that was on offer. My hem said in 2019 that a trial for ET would likely never happen in my time. Were both so glad for the breakthrough they had.
This exciting advance is part of a broader acceleration of new medical treatments using better knowledge than before. There are new JAK2 therapies that are getting started right now, some might be similar to INCA33989 for CALR here, targeting the Jak2 mutation much better than what we have now.
No side effects. It will be great that you start the study keep us posted
thank you for sharing and good luck
This is incredible news, I'm very happy for you! Has it had positive effects on other aspects of your blood counts? Have they measured your allele burden at all? Thank you for sharing
Hi all my other blood counts are normal as well. No they didn’t measure the allele burden but it will be measure at some point in the study.
Did they become normal with the new drug?
The platelets were not normal
And I had issues with my white blood at the start of the study but everything became normal after 1 infusion
Wow, this is going well right from the start. Thank you for stepping up to be a participant and sharing your journey.
may I ask, have you been having one infusion per week? And all that has happened in just 4 weeks? Amazing if it has.
Thank you for sharing your experience on the INCA 33989 trial and for participating in this study. It's very encouraging to hear about your progress so far. I'm sure there will be many of us CALR patients who will be following your progress closely, please do continue to update, many thanks. Wishing you well !
Hi, my name is Gian Piero and I am writing from Rome.
First of all, I am very pleased to see that the study is going well for you.
My wife is 56 years old and 2 years ago we accidentally discovered that she has ET CALR 2.
Since her platelet count has always been around 1,200,000, maximum 1,300,00, and since she has no symptoms or previous history of stroke and is not yet 60 years old, for the moment she only takes cardioaspirin. She has low values of Von Willebrandt's disease.
I wanted to kindly ask you a few things:
- during these 15 years of illness, what was the maximum value of platelets you had?
- you write that you took Pegasys for 15 years; at what age did you start taking drugs and for what reason, given that you were very young?
Maybe you had symptoms or the platelet count increased to the threshold of 1,500,000?
- I read that they will have to measure your allelic load to evaluate if it has decreased after the therapy. Our oncohematologist told us that the allelic load is measured only if you have ET with the Jack 2 mutation.
But frankly it seems strange to me, also because in the case of CALR 2 mutation, how would it be evaluated if the allelic load is decreasing or not?
Thanks and good luck!
Hi I was 1st treated with only aspirin but my platelets went over 1.5 millions
I was very tired, short of breath, foot that were tingling especially if I drank alcool. My hematologist at the time was from Switzerland and believed that because I was young Pegasys would be the better choice because it can bring a remission in some patients but not the other treatment.
I also had 3 transient ischemic episodes over the year that’s why I was high risk to enter the study.
For the study they will evaluate the allele burden at the end of the study to see how it is after the study treatment. My allele burden was measured couple of years ago and I had 39%.
Thank you for the answer. Sorry i have one last question:You write that 2 years ago they measured your allelic load, and they will measured It again at the end of the study;
But how did they measure It?
With the BOM?
Or in some other way?
Thank you again 🤗
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