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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
@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.
Replies to "@drbart86 Well just went through my final screening this morning - and while my Doctor was..."
@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 so sorry that you are in this situation- I’m sure it is discouraging. This is what I am cautious about when considering asking about a trial. I don’t live anywhere near where they are being offered, so unless they could work with my local clinic and doctor, I don’t think it would be feasible. (Still need to discuss with the hematologist.)
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@drbart86
Only you can make this tough decision.
Clinical trials can't happen without control groups.
But to me, the priority must be YOU and your quality of life. I for one couldn't layer more driving, more stress -- let alone more expense -- onto my daily load. Please give yourself permission to make the choice that's best for you.
I am so sorry you didn't get the opportunity to try the new compound.