Entering into a clinical trial

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michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Entering into a clinical trial

Postby michellecairn » Wed Jun 07, 2017 5:20 pm

I had seen a surgeon at the University of Chicago Medicine on 5-22-17, and he wanted to do an exploratory laparoscopy next week of my abdomen to supposedly determine if the mucus in my abdomen is "active" or "dying" cancer - which then would indicate that the Keytruda had been working.

My regular onc suggested that I see an onc at the University of Chicago Medicine as well before the surgery, to get their opinion, as well as any info on any clinical trials I may qualify for.

My regular onc is ready to start me on Lonsurf with the recommendation by the onc I saw at Mayo in October.

Anyways, I just left my appt in Chicago, and the onc there basically said that Lonsurf doesn't work, and there are still more options for me. He doesn't want me to have the surgery. He presented 2 clinical trials for me to enroll in.

The first one is testing the drug Abbv-621. He is very excited about this drug, which he basically said causes death to the tumors. He also did say that maybe only 10 people worldwide have taken this drug. He also did say they have to warn participants of Tumor Lysis Syndrome (TLS) which basically means the tumors break down too fast and your body isn't able to remove the products of the tumor breakdown quickly enough.

The other trial is for Nivolumab and an ID01 inhibitor.

Basically, I have decided to go with the first one. Mainly because of the promise of killing the tumors, and the fact that I am unable to have my tumors removed surgically. Also because the 2nd trial has an immunotherapy drug in it, it will still be widely available if this one doesn't work. I figured if I did the immunotherapy one first and it didn't work, then tried to get into the first one at a later date - it may be difficult to get into the trial.

All in all, we are looking at a first treatment date of June 28th. I will get an hour infusion on day 1, day, 8, and a break on day 15. The cyle then starts over. I will have screening tests on June 21st with an EKG and. CT scan. They will be repeating a CT before cycle 4 starts.

I guess I'm glad I did go to see them, mainly because I don't feel like I'm out of options yet, and my regular onc seems to almost be ready to throw in the towel.

I will keep everyone updated on my continued journey.

Best wishes to all!
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Entering into a clinical trial

Postby Maia » Wed Jun 07, 2017 6:12 pm

Michelle, that is a very new trial, indeed: https://clinicaltrials.gov/ct2/show/NCT03082209

ABBV-621 is a biological agent, a TRAIL agonist --which is a new class of immunotherapy.
Your decision makes sense to me. The other trial is good too --an anti PD-1 different from the one you had PLUS and IDO1 inhibitor. That combination showed good results for other cancers in studies showed this past weekend, at ASCO Annual meeting. It will be there, if needed.
I'm wishing you the best results!!!! Sending you strong thoughts! : )

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Entering into a clinical trial

Postby Jacques » Wed Jun 07, 2017 10:14 pm

michellecairn wrote:... He also did say they have to warn participants of Tumor Lysis Syndrome (TLS) which basically means the tumors break down too fast and your body isn't able to remove the products of the tumor breakdown quickly enough...

I have a couple of comments related to the Informed Consent for this trial. You will have to sign an Informed Consent document before starting the study, and I believe that this (legal) document probably says that you were given a chance to ask questions and that all of your questions were answered satisfactorily. Since this is a Phase 1 Dose Escalation trial, there is the possibility that the escalated dose level will overshoot what your body can handle. The question then is: what will happen if/when the dose level gets too high for your body? Did they explain to you what will likely happen? And are you satisfied with their explanation?

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Entering into a clinical trial

Postby Jacques » Wed Jun 21, 2017 1:27 am

michellecairn wrote:
All in all, we are looking at a first treatment date of June 28th. I will get an hour infusion on day 1, day, 8, and a break on day 15. The cyle then starts over. I will have screening tests on June 21st with an EKG and. CT scan. They will be repeating a CT before cycle 4 starts. !

Good luck on your screening tests today. I hope things go well for you this week.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Entering into a clinical trial

Postby stu » Thu Jun 22, 2017 3:19 am

Hope it all went well . All the very best,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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