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

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).

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).

@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 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 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

@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.