NCA033989 Trial - 2nd Infusion Update

[Zeppelin11]

On Monday, I had my second infusion. My pre-lab results showed my platelets at 326,000 and my LDH was normal – numbers I haven't seen since before my ET diagnosis. So far, I'm only experiencing fatigue, which is to be expected as my body adjusts. Depending on how my platelet count responds, my doctor may take me off low-dose aspirin. I'll have updated numbers next week and we'll adjust my treatment plan accordingly. Currently, I'm receiving a 750mg infusion every two weeks, which will continue indefinitely. My platelet count dropped significantly in just two weeks, so I'm interested to see what dosage will be most effective long-term.

My coordinator mentioned that Stanford will likely start phase two of the trial at the end of the year and expand the criteria for qualification. If anyone is interested in this trial, it might be worth considering.

That's all for now. Have a great day!

[dbus1417]

wow is all I can say 🤯

good for you, praise God and prayers that it lasts

how exciting and thank you again for participating and sharing. 🥳

[EPguy]

That is near instant results. Our existing treatments, when they work, are not that fast. Fabulous improvement.

Often when a biologic looks promising the developer will work on a subcutaneous version (Like IFN is given) If other pts get your result this could be more likely.

[George1976]

Fantastic news. I hope it keeps going!

[Mtnlife]

This is wonderful news. I may wish to enter this trial in the future. Right now I am doing well with HU and baby aspirin. No side effects whatsoever. This is very encouraging news.

[Luthorville]

What an absolutely fabulous result. Keep us posted!!

[Bluetop]

That sounds excellent! Thanks for joining the trial and keeping us informed. Good luck!

[dbus1417]

hi zeppelin,

Any updates on how you’re feeling? Do they do a post infusion blood check? Or only pre?

Did your doctors indicate whether this was intended to be a cure or a treatment long term?

Sorry for all the questions 😵‍💫 curious

Hope all is well

[Zeppelin11 in reply to dbus1417]

The last couple of days I have felt very tired and a little dizzy so I'm curious to see where my RBC and Hemoglobin levels are at. In 2 weeks my platelets went from 1 million to 326,000 so I was a little nervous about taking the same 750mg dose as I don't want my numbers to get too low. My next labs are this Wednesday.

In regards to the treatment, the goal is to essentially reverse the disease, so it would be a cure long term. Just not sure how long that will take.

I'll provide another update this week. Any questions are encouraged

[dbus1417]

How are things since the second infusion? Bloods still looking good? 🤞🏽

[Zeppelin11 in reply to dbus1417]

Doing well! Platelets are at 265,000. I'll post and update with more info. Thank you for checking in!