FOR ALL ON CLINICAL TRIALS (edited name)

[ms07]

Hey Dianne! I chatted w you in October/nov about the trial. I'm so, so, so psyched for you! Literally, I whooped out loud.

I thought you didn't get tested for pdl1 originally before they changed the protocol. Did you? And how long did it take? My tissue is hopefully in the process as I type. It got LOST en route the first time around. (Ugh).

[crazymotherof8]

GOOD NEWS! Just after leaving the oncologist office with him having talked my husband into going on the big "R" (I never know how to spell the name of that darn drug!) we got a call from the Scottsdale Pinnacle Research Center telling us that Genetech approved him to get on the single agent arm of the PD-L1 trial!!! We have to wait and see if his tumor sample has the right protein, but the chemo break is something that my husband is enjoying for now and doesn't mind continuing until the tumor testing is done. We meet with them on Friday to get all the paper work in order.

Dianne I can't tell you how much I appreciate your help and information. I hope that we will get the same results as you, even if it is just a few months of no side effects, it will be worth it. I know that we may not get good results, but that is a risk worth taking in my opinion. The big "R" cannot promise us any good results either and has a heck of a lot of side effects.

I will let you all know how it goes on Friday and when the tumor tests come back! Wish us luck!
Niki

[dianne052506]

Niki,
You are absolutely right! The squeaky wheel does get the worm! Fanstastic news.
I caught caught up in the drama with a lockdown at my daughter's high school yesterday, and did not get to call Dr. Powderly. I am happy to know that he was right about the slots.
Do you know what happens if the stored material does not test positive for the protein? Will they put Matt on the drug combination study?
I am so very happy for you. Go enjoy your worm.
Dianne

[crazymotherof8]

Ha Ha! Love it Dianne!
I don't know what will happen if the protein is not in his tumor sample. The other trial is in CO but we are willing to travel. Maybe by the time the information gets back from the tumor sample there will be slots open on the Avastin/PD-L1 arm. We have to wait until March to get on the PD-L! + Folfox when my husband will be off of Oxaliplatin for a year.
We will hopefully get many of our questions answered on Friday when we meet with them.
Thanks again!
Niki

[skypup]

Niki! What great news!!!

[crazymotherof8]

Thanks Skypup! and thank you for all of your help! How are you doing on your trial? Still no side effects? When do you get a scan?
Niki

[Maia]

Niki, great news!
This is really a path I'd like to explore --it makes sense, for me.
Sending good wishes to your husband and you!
Thank you again, Dianne, for sharing all this with us.

[jgall]

Niki! YAY for WORMS!!!!!!!!!!! You go get 'em girl. I'm so glad he's going to possibly be on this trial. Give Matt a big ole hug from his favorite dem for me

Dianne - thank you so much for sharing your experiences and helping!

[dianne052506]

okay, there is the Lung Thang Gang, the Olymphians, the Zaltrap Club, and Dr. K's kids. Should we be the PDLers (pronounced piddlers) for Programmed Death Ligand?
I'm getting a little silly tonight from being tired. Can you tell?

May all PDLers get the worm!
Dianne

[jerun]

I have a question about the tumor sample... I had 2 biopsies last Feb in my lung and sacral bone that confirmed the new cancer was from my colon cancer from 2/09. How do you find out about the protein? Is this something my Onc would know? How long do they keep the samples?
This treatment sounds exciting...
Best of luck to you and congrats on the results so far!
Jeri

[dianne052506]

Testing for this particular protein is not something your onc would typically order like KRAS testing. Plus, I would assume the trial sponsor would want to do all the testing themselves. When you are consulting with a clinic about the trial, the trial coordinator would have you sign consent forms and then order the samples from the facility where you had your surgery. I don't think the testing lab would keep them forever, but probably return anything remaining to the original facility. I'm not sure you're even notified when that happens. I know when MDA returned samples to my local hospital, I got a form letter in the mail.
Dianne

[crazymotherof8]

Dianne,
I LOVE your idea and wanted to pass something by you.....
Skypup is also on a immune therapy clinical trial drug and she mentioned the same thing about having our own thread....
How about we make a thread with a name like the one you started this thread with.....FOR ALL THOSE ON CLINICAL TRIALS....or something like that? It is not near as cute as your "Piddlers" idea but we could then include everyone who has tried, is on or who is looking into clinical trials. Or should we limit it to immune therapy clinical trials?? I just know that it is so difficult to research clinical trials and that the information that you and Skypup/Treily provided has been invaluable to me. I know that there are some that are on the clinical trial up in RI that would have good information to share as well.
Let me know what you all think and we get the thread started. I know that I LOVE the "wives of stage IV freaking colon cancer" thread!
Love to you all!
Niki

[skypup]

I love your idea, Niki, of a clinical trials thread instead of just an immunotherapy thread. It could really be a good resource for the group! I'm in and will help however I can.
Xoxo

[gep]

I'm really in favor of a clinical trials thread, too. Just got back from Sarah Cannon (aka Minnie Pearl) in Nashville where my husband started a trial yesterday. It's a MEK and AKT inhibitor study with two Genentech drugs and it's for solid tumors, not just colon. He's maybe the second or third colon person they've had on it. The guy in the next room getting it has esophageal cancer. Sarah Cannon is doing a lot of tumor testing for him on his most recent tissue which is from his liver and lymph node resection in January 2010. Northwestern keeps tissue for 5 years or so and he just also got the slides from his original surgery in August 2007. They told us then that they'd keep it for at least 5 years. Some places want a new biopsy, though, with the newest cancer in case things have mutated from the original assuming you've had new metastases from the original surgery. That's what we were told and Sarah Cannon has said that they may want to do a new biopsy on him. Some of this depends on where the metastasis is, too, I think. The only testing that Northwestern did on his original tissue was KRAS. It's my understanding that there are two ways to get all this molecular and other testing - you either pay for it at a place like Foundation Medicine in Cambridge or you find a clinical trials place that does it for free to establish eligibility for clinical trials. Northwestern has said that they're considering doing BRAF testing on everyone, too, like KRAS, but I don't think they're doing that yet.
They told us at Sarah Cannon that right now they can't do the PD1 testing because the drug company hasn't opened it for colon right now but that they think there will be an amendment shortly that will allow them to do it. They also told us that researchers don't currently believe that the PD1 changes so it's okay to use tissue from an original surgery.
I hope all this makes sense.
Gloria

PS - One of the main reasons I'm so in favor of this kind of thread is that some oncologists are better at taking care of patients at this stage in the game than others and some of the trials don't always appear on the clinical trials.gov website so quickly. Those listed on the website don't always list all the locations the trial is at or list them other than a city. One thing I recently learned is that the clinical trials.gov listing will usually have the drug company name and email. I actually emailed genentech to ask them where a trial was and they answered with the actual locations and contact names. Who knew they'd even answer??

[crazymotherof8]

Dianne,
I am thinking that this thread already has some very valuable information for many people so what about you changing the name of the thread just a little and editing your first post to include a paragraph about how this thread is for everyone that wants to post about clinical trials. I know that wintercrossing has a husband on the trial in RI and I will contact here to see if she will post on the thread. Also I know that Ashlee has posted before about clinical trials and I will see if we can pull her information into this thread as well.
Let me know what you think.
Niki