1. < Blood Cancers & Disorders
Profile picture for lisanell

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for vivoconte
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).

Jump to this post

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

REPLY
Profile picture for janemc
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.

Jump to this post

@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.

REPLY
Profile picture for drbart86
drbart86 | @drbart86 | Jan 17 10:08am

I appreciate your comments.

REPLY
Profile picture for kafr
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

Jump to this post

@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.

REPLY
View MoreView Less
Please sign in or register to post a reply.