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Is anyone involved in clinical trials for ET, specifically for CALR?

Posted by lisanell @lisanell, Dec 30, 2025

Is anyone involved in any clinical trials for ET, specifically for CALR? I am unable to tolerate Hydroxyurea, and am currently only taking aspirin. I saw this one: “JNJ-88549968 for the Treatment of Calreticulin (CALR)-Mutated Myeloproliferative Neoplasms” on clinical trials.gov and other cancer center sites.

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vivoconte | @vivoconte | Jan 17 5:01am
In reply to @drbart86 "I will hopefully begin a trial next week. I was diagnosed with ET (CALR) in 2018..." + (show)
Profile picture for drbart86 @drbart86

I will hopefully begin a trial next week. I was diagnosed with ET (CALR) in 2018 and was on HU for about 3 years before became intolerant. Have been on Jakafi since then. I was at a LLS conference a few years ago and was asking a pharma rep about specialists. Turns out one is located not far from where I live and have moved to him as he does clinical trials (I did really like my pervious doc and was difficult to leave). We tried to get on a phase 1 trial about 3 years ago, but a couple of items were just barely to low. As a new phase 3 is opening for Bomedemstat I am hoping for that. Getting on is no easy task. For this one it requires 2 bone marrow biopsies, about 10 tubes of blood, and general physical exam. Turns out my first set of bmb turned out to be bad samples. But looking at preliminary data is worth a second round so have gone through the screening twice in 2 months. Fortunately, I have a great care team at the facility.
Looks like another trial for another solution is opening as well that also has promising early results (see post about ASH conference also posted today).

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@drbart86, hola, espero te encuentres bien. Quisiera saber como fue tu intolerancia a la hidroxiurea?

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janemc | @janemc | Jan 17 8:02am
In reply to @drbart86 "Thanks for the support. It will not be an easy decision as I know the control..." + (show)
Profile picture for drbart86 @drbart86

Thanks for the support. It will not be an easy decision as I know the control data is needed.
Hope well on your journey.

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@drbart86

A friend with ALS volunteered for a drug trial. It was a heroic choice, but absolutely horrible for her. Her ALS progressed very quickly; she had less than a year after diagnosis.

Participating in the trial meant taking 10 (extra) pills a day as well as multiple two-hour trips to the clinic. Worst of all, it meant she couldn't take a medication to ease a heartbreaking symptom of ALS, uncontrollable sobbing. That wasn't disclosed when she signed up for the trial.

Please be sure you fully understand what this drug trial would entail.

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drbart86 | @drbart86 | Jan 17 10:08am

I appreciate your comments.

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kafr | @kafr | Jan 17 6:39pm
In reply to @cathy8 "@drbart86 hi, I was diagnosed with two mutations in the bone marrow Jak2 and Calr, apparently..." + (show)
Profile picture for cathy8 @cathy8

@drbart86 hi, I was diagnosed with two mutations in the bone marrow Jak2 and Calr, apparently very unusual, I was on 300 c aranesp injection once every three weeks and 150 interferon injection and jakofi 5 mg in morning and 2.5 in evening..this continued for several months and successfully reduced my platelets and my haemaglobin came up to almost normal.. unfortunately I then started to get severe headaches and generally felt unwell so was taken off the interferon and put on 500 aranesp injection and jakofi 5mg morning and night...my last visit the platelets had gone back up and haemaglobin had dropped so new medication doesn't seem to be doing the job tho maybe early days. I may suggest going back on the interferon injection as it seemed to work despite side affects. I suffer with severe tiredness which is most frustrating, am grand sitting all day but that is not living...not sure if this is of any interest..good luck with your treatment

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@cathy8
It is interesting for me to hear that you have both CALR and Jak2. I was initially diagnosed with ET CALR mutation in 2022. Last year my oncologist left, so I reached out to the Mayo in Phoenix and was accepted as a patient. After running tests on me, my oncologist told me I have Jak2. On my next appointment, they will test the proportion of mutation. From the start I have been on small dosage of Anagrelide. At first I had heart palpitations, but after a short time no longer experienced that, no other side effects, and has brought my platelets down to 383 from a high of 600. My oncologist at the Mayo will be switching me to Hydroxyura 500 mg 3 x week. (Less long term side effects?) I hope you will get past feeling severely tired - that is a difficult way to spend every day.

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patty1962 | @patty1962 | 6 days ago

I am in the JNJ-88549968 trial for ET/Myelofibrosis caused by the mutations in the CALR gene.

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lisanell | @lisanell | 6 days ago

I have ET-CALR and am intolerant to Hydroxyurea. I am waiting to see if I will be accepted to a clinical trial for INCA033989 at MD Anderson.

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janetbender | @janetbender | 5 days ago

I have ET / CALR and it took 18 mo for my platelets to go from 1.1m to 400k.
It was a long yr until side effects subsided. Thank goodness for supermarket / pharmacy delivery!
I’ve now reduced hydrea from 500mg daily to 3x per week.

I recently had other medical issues and learned pain can cause platelet count to jump 100 points.
Don’t be surprised (like I was) if your platelet count fluctuates.

I hope the clinical trial works well.
Please keep us informed and good luck!

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nohrt4me (Jean) | @nohrt4me | 5 days ago
In reply to @lisanell "I have ET-CALR and am intolerant to Hydroxyurea. I am waiting to see if I will..." + (show)
Profile picture for lisanell @lisanell

I have ET-CALR and am intolerant to Hydroxyurea. I am waiting to see if I will be accepted to a clinical trial for INCA033989 at MD Anderson.

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@lisanell Thank you for participating in the trial. Hopes are high for INCA033989.

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1pearl | @1pearl | 5 days ago
In reply to @nohrt4me "@lisanell Thank you for participating in the trial. Hopes are high for INCA033989." + (show)
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@lisanell Thank you for participating in the trial. Hopes are high for INCA033989.

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Hi @nohrt4me ,
That is the one I am interested in too.

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drbart86 | @drbart86 | 4 days ago

Quick update. Still on the Merck trial (control) but have had to ups my dose of Jakafi to 15 mg/2x/d as the 10 mg/2x/d was not helping. Hoping to get on the JNJ-88549968 trial soon. This treatment may be one of the best options to a cure for the CALR mutation. Incyte is also starting trials with a similar mode of action.
https://www.ctsearchsupport.org/clinical-trials/a-study-of-jnj-88549968-for-the-treatment-of-calreticulin-calr-mutated-myeloproliferative-neoplasms

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