Questions about Epigenetic Priming Article - 1272007

rklinck
Posts:4

Hi Dr. West,

I would like to ask some questions about the article "Can Epigenetic Priming Improve Efficacy of Immunotherapy in NSCLC?"

First of all, about me. I am Stage IV, metastatic, Squamous NSCLC who has just been taken off
Nivolumab because I wasn't responding well enough. I am searching for another study to join when
I ran across the above mentioned article. It sounds like it makes perfectly good sense and I would
like to know more about joining it. I've spoken to my doctor about it and he feels we may be a bit too
early, especially regarding the insurance.

How can I find out more specific information and pursue this further?

Thank you very much indeed for your kind help!!

J. Robert Klinck

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Reply # - December 4, 2015, 03:58 AM

JimC
Posts: 2753

Hello,

Welcome to GRACE. As Dr. West mentioned in that podcast, the clinical trial testing of azacytidine is at the Phase II stage. Although it has seemed effective in mouse models, at the Phase II stage it has not yet been shown to be effective in humans. Unfortunately, many therapies which appear very promising in mice do not provide similar results in human clinical trials. So although this trial might be an option for you, since you did not respond well to nivolumab your doctor may wish to try a different approach.

If you are interested in the trial, you can go to https://clinicaltrials.gov/ct2/show/study/NCT02546986?show_locs=Y#locn Near the bottom of the page, in the section titled "Contacts and Locations" there is a phone number and email address for the trial sponsor, as well as a listing of the locations at which the trial is being conducted.

JimC
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Reply # - December 6, 2015, 01:23 PM

catdander
Posts:

Hi J Robert,

I just wanted to add a thought even though you didn't ask. You said you didn't respond well enough. That statement suggest you responded at least a little. If that's so it may be worth sticking to the immunotherapy for a little longer to see if that response improves, for 2 reasons: 1. Immunotherapies are known to sometimes have a response that, on scans, can look like progression when in fact it's inflammation caused by the immune system gearing up (a positive response to the Nivolumab). 2. For some a good response to any anti cancer drug is stability, no shrinkage but more importantly no growth.

So with those 2 things in mind it may or may not be time to move on from nivo, but having that conversation with your oncologist is certainly worth your while.

Hope you do well,
Janine

Reply # - December 6, 2015, 06:36 PM

rklinck
Posts: 4

Dear Jim C

Thank you very much indeed for that link!! That's super helpful. I have forwarded
the ClinicalTrial.gov Identifier number to my oncologist and we will talk about it during
our next appointment.

Thanks again for taking the time to reply to me.

Yours sincerely,

J. Robert Klinck

Reply # - December 6, 2015, 06:44 PM

rklinck
Posts: 4

Dear Janine,

Your reply and comments are truly appreciated. For the first three months or so of Nivolumab my
body's response couldn't have been better, but starting about September I slowly started remission
and by last week all my progress was erased and I'm not showing much positive progress at all.

Having said that, I am still showing some positive progress with my smaller tumours. My oncologist
has mentioned both points you made and we've been giving my main tumour ample time for those
anomalies, but basically it is still growing.

Thank you for taking the time to write me and your comments are truly appreciated. I will write back
to let you know what my oncologist and I decide.

Yours sincerely,

J. Robert Klinck

Reply # - December 7, 2015, 09:35 AM

catdander
Posts:

Thanks for explaining and it's good to know you're in good hands. However, I'm so very sorry the drug may not be working so well anymore.

Keep us posted.
Janine

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