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Is anyone involved in clinical trials for ET, specifically for CALR?
Blood Cancers & Disorders | Last Active: Jan 17 6:39pm | Replies (14)Comment receiving replies
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).
Replies to "I will hopefully begin a trial next week. I was diagnosed with ET (CALR) in 2018..."
@drbart86 Well just went through my final screening this morning - and while my Doctor was very optimistic, I was randomly (supposedly) assigned to the control group. While I can still be considered to be on the trial, I will remain on Jakafi, and have to do labs more often than normal. As a scientist, understand the need for controls, but the new compound (Bomedemstat) looks very promising and at best I can say I am very disappointed not to be on the test product - not really sure how to feel, but not a good day. I am so tired of my symptom load and do not want to accept it as the "new normal".
Now I must decide whether to stay on the trial or not, if I do I can go on the test in a year. To stay on the trial means lots more visits to the clinic (about 45 miles away and often with heavy traffic) and likely higher costs to me as the sponsor only pays for the few added blood assays.
It is amazing how much of a lift one can get when they feel there is a bit of hope in these situations, and how hard the fall is when it does not materialize. Now I wonder if all the tests (including 4 bmb) and with the encouragement and support from my doctor and his team, if these are worth the emotional capital.
@drbart86, hola, espero te encuentres bien. Quisiera saber como fue tu intolerancia a la hidroxiurea?
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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.