When to participate in clinical trials?

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okie57
Posts: 10
Joined: Wed Aug 31, 2016 9:23 pm

When to participate in clinical trials?

Postby okie57 » Sat Sep 24, 2016 10:07 pm

DH on 1st line of FOLOX and will have 5th tx Wednesday. Current oncologist not giving us any hope, just says that the chemo is pallative.

Recent CEA went up a bit, so DH had PET scan. Shows PR with possible area in right liver lobe of confluence that might indicate chemo failure. Taking wait and see with PET in December and bimonthy CEA tests. Continuing with FOLFOX.

Maybe clinical trials are the answer for hope. Saw on a trial matching site that timing is important. How will we know when we should get into a trial? We don't want to wait too long and miss one that could definitely give us hope.
DH, 68 @ dx 6/16, Stage IVb, mCRC tumor spread to liver, lungs, lymph system
MSS, K R A S mutated G12D
CEA 7/16 125, 8/16 143, 9/16 155, 10/10 78, 10/17 171, 11/07 93
CA-125 10/17 99.8
7/12/16 start FOLFOX, 7 tx, 1st tx w/Avastin (but got lung blood clot), Avastin added back on 6th tx, 7 tx no 5-FU push now, 8th tx allergic reaction to Oxi, 11/23/16 failed, progressing
11/23/16 start FOLFIRI + Avastin

AngelaN
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Joined: Tue Jan 28, 2014 9:00 pm
Facebook Username: angelamnicholas

Re: When to participate in clinical trials?

Postby AngelaN » Sun Sep 25, 2016 7:35 am

This is a tough decision. Our onc and I finally agreed that when we had exhausted the "standard of care" and there was further growth or no change would be when we would start the process. And that's exactly what happened. He had A series of FOLFOX + Avastin, then multiple surgeries for tumor debulking then FOLIRI+ Avastin and more individual tumor treatments. When he got more tumors we started down the path. There is no reason to start looking for a trial now. If it is nothing, no time lost, if it is something after the PET in Dec you have jumpstarted the next treatment.
DH diagnosed with Stage 4 CRC Nov 2013
11 tx Folfox/Avastin; LAR/liver resection/introp RF of liver - May 2014
3 treatments FOLFIRI
Lung resection - Sept 2014
FOLFIRI + Avastin x 10 treatments
Avastin+5FU q3 weeks x 4
SBRT x 1 lung met
RFA for remaining 3 in Oct and Nov
SBRT for liver met Jan 16
lung mets growing
Enrolled in NIH TIL trial Oct 16
XRT for lung met 12/16
Cells didnt grow for TIL trial Feb 17
Waiting for NCT03085914 at Penn

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mypinkheaven
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Facebook Username: Sally Cunningham
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Re: When to participate in clinical trials?

Postby mypinkheaven » Sun Sep 25, 2016 11:59 am

okie57 wrote:DH on 1st line of FOLOX and will have 5th tx Wednesday. Current oncologist not giving us any hope, just says that the chemo is pallative.
Maybe clinical trials are the answer for hope. Saw on a trial matching site that timing is important. How will we know when we should get into a trial? We don't want to wait too long and miss one that could definitely give us hope.


Will your current oncologist help you look for a trial? If not, can you get a second opinion from a different one? Did you see anything on the trial matching site that might be appropriate for your hubby? I wouldn't wait - I'd start looking for one now. Like Angela said you'd have a jumpstart if you need it.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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LPL
Posts: 412
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: When to participate in clinical trials?

Postby LPL » Sun Sep 25, 2016 5:02 pm

Hi okei57,
From another Forum (Inspire https://www.inspire.com/fighterm/journa ... s-for-you/ ) I have saved this link to a site that can help find clinical trials. There were many people posting positive things about them.
But Please know that I have no personal experience of contacting them.
Here is that link if it can help you.
https://www.cancercommons.org/home
Kind Regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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DH2Sleen
Posts: 80
Joined: Thu Jan 29, 2015 10:10 am

Re: When to participate in clinical trials?

Postby DH2Sleen » Wed Sep 28, 2016 8:24 am

Hi Okei57,
You certainly have the odds stacked against your DH, so you are right to start thinking about it now. Your timing will need to be just right to get into a trial. Most require first line chemo to have been completed or failed, so he is not eligible for those yet. Also, many have an age limit of 70yo. Since DH is 68 now, the window is small.
I personally believe that most stage 4 people should go after a trial as soon as they complete their first line chemo. We have seen that the cancer can mutate more and more with time, and each new mutation can make it harder to beat back. Sleen's MSS Kras mutated tumors were wiped out by the NIH TIL trial, except for one that mutated to destroy a vital chromosome... Surgery took care of that one. Now she is NED because the problem tumor (apparently) didn't have a chance to spread (metastasize). She is an unusual case that you can read about here http://cancerriot.blogspot.com/.
The best thing you can do is educate yourself and advocate for a curative treatment plan, and if your onc doesn't support that idea, find a new one.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
09/2013 colectomy
10/2013 - 3/2014 FOLFOX
04/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
03/2015 enter TIL trial @ NIH
07/01/15 Receive 148E9 cells to target K-ras G12D mutation
08/11/15 Reduction=18%, no new tumors
09/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
01/26/16 46% but one suspicious met
03/24/16 46% but one growing
04/07/16 Lung lobectomy NED for the first time

okie57
Posts: 10
Joined: Wed Aug 31, 2016 9:23 pm

Re: When to participate in clinical trials?

Postby okie57 » Fri Sep 30, 2016 10:56 pm

Thanks for all the replies---they really got us thinking. Thanks, LPL for the links, we are going to send DH's info in and see which trials they match us with.

Thanks, DH2Sleen, for pointing out the common trial disqualifier of 70 years of age. DH turns 69 in Dec, so we need to get a move on. We think that our HEMOC may say that FOLFOX is failing because of DH's rising CEA and the confluence in his right liver lobe at his Oct 10th appointment, especially if the CEA on that day is up for the 3rd time. So, we have an appointment for Oct 17th at MD Anderson for a second opinion about where we should go next, any possible trials, and DNA sequencing. I also read your wife's blog completely and think she is one brave woman who got to NED because of her strength and willingness to be in a trial. Thanks for the tip about getting surgery when possible before the tumors start mutating or resisting chemo. We didn't realize that different tumors in the body could be mutated to different DNA at different times, making it possible for one line of chemo to work on some, but not all. Cancer is so insidious and sneaky!

Tip for anyone going to MD Anderson: Initially (before chemo), they told us that it would be 4 to 6 weeks to get an appointment and they needed a pathology report from the colon tumor. The CT or PET scan wasn't enough. They said that 1st line is pretty standard and that DH needed chemo ASAP and not to wait on them. So, we started here in OKC. It is hard to get in quickly there, so plan ahead. They told me today that they would take us because DH had at least 4 rounds of 1st line FOLFOX. I thought he had to be done with 12 tx or already considered 1st line chemo failed. They said that if we start the 2nd line, we would have to wait until DH finished at least 4 rounds. So, there is a timing issue with chemo, as well.
DH, 68 @ dx 6/16, Stage IVb, mCRC tumor spread to liver, lungs, lymph system
MSS, K R A S mutated G12D
CEA 7/16 125, 8/16 143, 9/16 155, 10/10 78, 10/17 171, 11/07 93
CA-125 10/17 99.8
7/12/16 start FOLFOX, 7 tx, 1st tx w/Avastin (but got lung blood clot), Avastin added back on 6th tx, 7 tx no 5-FU push now, 8th tx allergic reaction to Oxi, 11/23/16 failed, progressing
11/23/16 start FOLFIRI + Avastin

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LPL
Posts: 412
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: When to participate in clinical trials?

Postby LPL » Mon Oct 03, 2016 9:23 am

okie57,
Good Luck with your appointment at MD Andersson!
Did I understand correctly that they said you could change chemo after 4 Folfox (1st line) ? Hubby had 4 Folfox before liver mets surgery and if the pathology report comes back saying 'no response to the chemo' (if they can say that?), then I can't see/understand that 8 more of the same chemo would do anything to 'mop up' or what it is called. Unless it takes more then 4 treatments to show result that is. Yes, there is a lot I don't understand :|
Kind Regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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