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

@drbart86 Got home from 2nd dose. Was higher and my body really reacted as well. I kept wondering how nobody else saw the trucks coming through 🥹. But other than the fatigue nothing else to bad. Final titration dose next week, then hopefully go on to maintenance doses on a 3 weeks schedule - without the hospital stay.
From my perspective, the antibody treatments to CALR look to be a huge step forward. Of the two I am aware of (different modes of action) these may be game changers for us.
I remain really thankful to the medical professionals, drug companies, and all the caregivers that support patients and to improve our quality of life. And I hope the best to all those on this journey.

@drbart86 Got home from 2nd dose. Was higher and my body really reacted as well. I kept wondering how nobody else saw the trucks coming through 🥹. But other than the fatigue nothing else to bad. Final titration dose next week, then hopefully go on to maintenance doses on a 3 weeks schedule - without the hospital stay.
From my perspective, the antibody treatments to CALR look to be a huge step forward. Of the two I am aware of (different modes of action) these may be game changers for us.
I remain really thankful to the medical professionals, drug companies, and all the caregivers that support patients and to improve our quality of life. And I hope the best to all those on this journey.

Ì have been taking hydroxurea and ĥave had severe reactions: severe vomiting and what my hematologist calls "not common" side effects. Have tried Anagrelude but the side effects were worse. Has anyone tried the Besremi or Jakifi previously mentioned?

Ì have been taking hydroxurea and ĥave had severe reactions: severe vomiting and what my hematologist calls "not common" side effects. Have tried Anagrelude but the side effects were worse. Has anyone tried the Besremi or Jakifi previously mentioned?

Briefly - Antibodies are what attach to "bad" things which then signal to macrophages and or "trained" (via prior exposure) immune cells to kill the invader (i.e. pathogen). For the CALR mutation, antibodies have been developed to attach to the mutated protein. At this point I am aware of 2 products currently undergoing human trials. One this the antibody alone, and from my understanding mainly just regulates production (I would guess similar to other cytoreductive agents (HU, Jakafi, etc)) but would likely not have the side-effects of lowered RBC, etc. as it is only attacking the specific CALR mutated cell. The second is the antibody that is also attached to another "killer" immune cell, that when attached to the CALR mutant cell will then kill the cell. This called a Bispecific Antibody (or you may see as a BiTE treatment = Bispecific T-cell Effector). From what I have seen, the first product (by Incyte) has a very high tolerance level and early results look good. The BiTE treatment should be more effective, possibly with greater potential side-effect risk (From Johnson & Johnson).

This is my best lay interpretation of these technologies. But, I will not claim to have all the details exactly correct - that is where you need to work with your specialist. For the phase 1 trial, I believe the number of patients is a total of 220 worldwide and for my trial site is a total of 9; so I would expect that the number at and center would be similar. What would be interesting to know would be the criteria that are used to determine final dosing. My final dose will be fairly low compared to another that I have has contact with. I only have ET, they have MF.

Hopefully once I get my dose settled in and "routine" maybe my symptom load (mostly severe fatigue) will go back a few years and my "normal" will be more enjoyable - as the song goes - "I'm much to young to feel so damn old"!!!

@drbart86 Thanks! This sounds like the INCA033989 from Incyte? Again, many thanks for these updates. If we could, we would all be bringing you a hot dish and doing your dusting for you!

@drbart86 Thanks! This sounds like the INCA033989 from Incyte? Again, many thanks for these updates. If we could, we would all be bringing you a hot dish and doing your dusting for you!

Hi @drbart86 Thank you for this update and your participation into this Clinical Trial for ET. Cancer research and development depends on these trials…along with the long awaiting cancer patients who would love to find a cure or remission from disease!
So far so good, as ‘they’ say, eh? I can relate to the mainlining of Benadryl! The best sleep I ever had. 😳 But also wired for hours later. LOL.

Sending positive vibes for smooth sailing with the next round. Keep us posted! Hugs.

@loribmt update week 2 and early week 3.
Week 2 not much more than the increase in fatigue / lack of energy. I guess to be expected due to the huge engery burden that the immune system requires. Would walk in the hospital corridor from one end and back (1/4) and was tired.
This morning had 3rd dose. A big early to really tell, but had to rest on my corridor walk this evening. As well as a much slower pace. But it has been the day after that is the worst. Unless something strange happens remainder treatments in clinic every 3 weeks for up to 5 years.
Hoping fatigue will end at some point. Is a beautiful backpacking loop in the San Juan's (most beautiful part of CO) that I want to do again. But I think Everest is out of the picture 🤣 (not that it ever really was)