NUREX - 2127 ONE YEAR ANNIVERSARY START... - CLL Support

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NUREX - 2127 ONE YEAR ANNIVERSARY STARTING CYCLE 14

steve5441 profile image
25 Replies

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.

25 Replies
justhawk profile image
justhawk

Hadn't heard of this one, glad there's yet another potential option!

And glad you are doing well on it! Congrats!

steve5441 profile image
steve5441 in reply to justhawk

Thanks.

CycleWonder profile image
CycleWonder

I just started a trial for Pitrobrutinib for treatment naive patients. I was hoping not to develop resistance.

Glad to hear the new medication is working so well.

steve5441 profile image
steve5441 in reply to CycleWonder

You will do fine on this drug. It took me 6 months and I was in remission.

Stamphappy profile image
Stamphappy in reply to CycleWonder

Wishing you all the best, CycleWonder. Hope all goes well and for a long remission.

steve5441 profile image
steve5441 in reply to Stamphappy

Thank you.

BobbyFour profile image
BobbyFour

That is a very encouraging result!

cllady01 profile image
cllady01Volunteer

Here is the clinical trial info: clinicaltrials.gov/ct2/show...

Great news, Steve, and thank you for sharing.

steve5441 profile image
steve5441 in reply to cllady01

Thanks for volunteering your time

Smakwater profile image
Smakwater

Results appear to be promising steve5441.

looks like the trial is only in the UK?

Thank You for all of your trial participation.

JM

Smakwater profile image
Smakwater in reply to Smakwater

Actually found US locations at this link - clinicaltrials.gov/ct2/show...

steve5441 profile image
steve5441 in reply to Smakwater

I don't think this trial had a bunch of slots available. Thanks

Smakwater profile image
Smakwater in reply to steve5441

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 profile image
steve5441 in reply to Smakwater

Thank you

Big_Dee profile image
Big_Dee

Hello steve5441

That is really good news, blessings.

steve5441 profile image
steve5441 in reply to Big_Dee

Thank you.

200185 profile image
200185

So glad you’re doing well. Keep on trucking

Stamphappy profile image
Stamphappy

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.

steve5441 profile image
steve5441 in reply to Stamphappy

Thank you so much.

alpek profile image
alpek

Glad you are doing well it sounds like a promising trial, have you had any side effects to the medication?

steve5441 profile image
steve5441 in reply to alpek

So far just the neutropenia. Monthly injections of neuprogen keep it in range.

Katinlr profile image
Katinlr

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?

steve5441 profile image
steve5441 in reply to Katinlr

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.

Thundercat2 profile image
Thundercat2

I had not heard of this one either but always glad for more options. Please keep us posted on your progress. We appreciate you!

steve5441 profile image
steve5441 in reply to Thundercat2

Thank you.

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