NCA033989 Trial - 4th Infusion Update (ET+CALR1)

[Zeppelin11]

I'm happy to report that my fourth infusion last week went smoothly. My bloodwork came back with a platelet count holding steady at 256,000, and all other levels are normal. I also haven't experienced any side effects, and my energy levels continue to improve.

With that in mind, I no longer need the four-hour monitoring period. From now on, the pharmacy needs about 45 minutes to prepare the medication after I check in, and the actual infusion takes around 30 minutes. On infusion days, I also see my doctor for a check-in and have labs drawn an hour before the infusion. Considering the two-hour commute each way, it does take up the entire day. I'm not complaining, of course, just highlighting the time commitment involved in participating in the trial. Fortunately, my experience has been positive so far, making it all worthwhile.

Unless anything significant comes up, I'll start spacing out my updates. I'm planning to have my next Bone Marrow Biopsy (BMB) in August, as I'm opting to wait six months instead of doing one at three months.

Have a great week everyone!

[Mieshie]

fantastic news! Very happy for your continued success with this trial. Thank you for sharing.

[Hopetohelp]

great news and thanks for sharing

[dbus1417]

🎉🎉🎉 that is awesome!! So happy for you.

What is the long term plan for this? Do your doctors think eventually you’ll space out the treatments ? I wonder if this like resets the clock on the disease.

[Zeppelin11 in reply to dbus1417]

The long-term goal of my treatment is to reverse the disease—it's amazing to consider, especially since I was initially told I would live with it forever. As I'm in phase one, I'll continue to have infusions every two weeks for the foreseeable future. I'm hoping that by the end of this year, I'll be down to one infusion per month.

I'm crossing my fingers for promising results from my next Bone Marrow Biopsy (BMB) in August. That should give us a better understanding of the appropriate dosage and frequency of my treatments.

[hunter5582]

Great news! Thanks for keeping us updated.

[EPguy]

Great progress, we all await drugs with more effect and less side. This look like it could be one.

[Joetcalr]

Thank you for your updates, Ican’t wait to get on it 🤞

[ETket]

That's great news. I also find mine takes up much of a day, including the travelling. Next one is tomorrow.

[welshhuw]

Great news !......hope you continue to do well on the trial.......Thanks for sharing and please do continue to post updates.

[Spanelmad]

Keep the updates coming this looks like it could be encouraging news for us all in the future

[CanadaG]

This new drug appears to be very effective. So happy for you and thank you for providing regular updates

[Peterwi]

Thank you for the update and please continue to update now and then

[Meatloaf9]

Congratulations and thank you for participating in this trial. The only way to advance treatments. You are a leader. Best always

[ETinNYC]

Thanks so much for the update. I'm encouraged that you're feeling well on this drug and that it appears to be working well. That's fantastic. Long may that continue. Looking forward to hearing about your BMB results in summer. Exciting times! (Who thought that could ever be said in this situation, right?!) Sending hugs from NYC.