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

Posted by lisanell @lisanell, 1 day ago

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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janetbender | @janetbender | 1 day ago

I’m not in a clinical trial for ET / CALR.
I was taking 1 500 mg hydroxyurea until my platelet count decreased. Now I’m on a lower weekly dose.
My platelet count went from 1.1 million to 450k. It takes time!!

I had trouble adjusting to hydrea but after about 9 mo I was ok.
There are alternative meds and you can ask your doc.

It depends how high your count is and your level of side effects.
Good luck.

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drbart86 | @drbart86 | 1 day ago

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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janemc | @janemc | 22 hours ago

https://mailchi.mp/e3b49744f1a5/new-developments-in-mpn-research-10612935
is the link eferret provided on another thread to a report on that conference

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nohrt4me (Jean) | @nohrt4me | 49 minutes ago
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 Thanks to all who participate in trials. Not something many of us are willing or able to do, but it helps all of us.

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