Here's an update of my second clinical trial. I started this BTK degraeder November 11, 2021, now here I am, over a year later and doing really well. Other than neutropenia, and having to get a monthly neulasta injection, my blood counts have continued trending to normal levels. Here are my starting and current blood levels; Hg 8.9 14.2 WBC 2.5 6.1 Abs Neut .9 4.0 Abs Lymp 8.0 2.1 Plat 85 135 Igg 420 1050.
My doctors are pretty excited over this drug and there will be a presentation next month on Nurex at the hematologist convention.
At over thirteen years since diagnosis, and working on my fifth treatment, here's a list of my various treatments.
1. FCR 2010 all 6 cycles. 5 1/2 years remission
2. Ibrutinib 3 years developed C-481 resistance
3. Venetoclax 18 months never really worked for me, didn't like hospital ramp-up
4. Loxo-305 20 months CR then I developed a mutation that worked it's way around the drug. My favorite treatment.
5. NX-2127 12 months and counting.
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steve5441
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All I could read is that there were 130 participants estimated for enrollment, and that recruiting is still active. Most likely is dependent on the individual hosting institution.
Steve5441, thank you for your post. I first read about Nurex - 2127 last Fall. I've been following it online since.
Sounds like you are doing well on this trial 👏 I'm so happy for you!! Thank you from the bottom of my heart for your participation. So nice to read this positive news. Just wanted to wish you all the best. Please keep us posted.
Congrats on your success Steve and thanks for being a part of a trial which may help many of us. Do you know what type of resistance mutation you developed to the LOXO?
Yes, and my Dr told me about it last week at my visit, but I don't know if they had assigned a name to it as of yet. The researchers at MSKCC isolated and identified the mutation. The discovery actually came from one of my many blood samples.
Hi Steve, I am so happy for you that you are doing well. I am finishing Venetoclax in August. I know from my doctor, they will have the trial that you are on now. Could you tell me, please, if you had any mutations confirmed by testing at the beginning of your treatments? Just when you started your first treatment. I always worry, because, I have TP53.
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