FOR ALL ON CLINICAL TRIALS (edited name)

[gep]

Dianne,
Thanks so much for sharing about your trial We wouldn't have known to look for it without your input. Eli's oncologist isn't like yours. He hasn't been directive in this process although he has put us in touch with very good people.
Gloria

[dianne052506]

When I called today to find out my CEA from last week, I talked to the trial coordinator about slot availability in the studies and told her I had referred a number of friends her way. She still say a week or two on the slots. I confirmed that the single-agent trial needed either a biopsy or stored tumor testing. I asked if a patient had to wait until the slot opened up to get the tumor testing done. She said No. A patient who is interested could contact her, sign the consent forms for the testing, and give her permission to retrieve some of the stored material and have it sent to Genetech for testing. When I had it done, there was no charge from my local hospital for retrieving and mailing the stored tissue, but I guess that could vary place to place. There was no charge from Genetech for the testing.
BTW, during the trial, Genetech pays for most everything, Aetna picks up some costs that are not directly related to the trial. So far, Aetna has not kicked on the CT scans every 6 weeks. If they are ever denied, then Genetech will pick up those costs also.
Dianne

And, for me, the big news? After 9 months off chemo, my CEA is 2.7, the same that it was in April. Can we say HAPPY DANCE??
Dianne

[vickitwo]

Wonderful news.

[crazymotherof8]

Thank you so much Dianne and great news about your CEA!!!! My husband does have stored tumor sample so I will ask the onc about it on Monday when we have our consult appointment. If you could PM the information for your trial coordinator that would be great. Don't know if I should have it sent to her or to CO where we would go once it opens up but I could at least speak with her.
Niki

[gep]

Really happy dance!!
Gloria

[dianne052506]

I started another thread and wanted to post a link to it here. An article came out in November with a follow-up on patient response to the BMS PD-1 trial. Sounds good.

dge

[dianne052506]

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=39022

Would have been helpful to actually include the link!
dge

[crazymotherof8]

Thank you Dianne for the links they were indeed very hopeful.
I have to tell you I am a bit frustrated by this process and wish we were nearer to Carolina BioOncology Cancer Research Center! Twice now your information from there has prompted me to call back and push and then when I have. I have received better and more detailed information.

Yesterday my husband and I had a consult at TGen here in AZ. The only study they had available for him right now without waiting for tumor testing would be a difficult one. It is every week and on the fourth week it is 4 days worth of tests and infusions. Also two liver biopsy"s are required. We live 3 hours away and we still have 4 children at home.

This morning I called the other research center here in AZ which has the single agent PDL1 trial going on to check and see if there is any news as to when it might be taking colon cancer patients again. She told me that she had just received new information and that they were not going to take any more colon cancer patients, just a list of others that she read over the phone to me.

I decided to call Carolina Bio to see what they had to say and they told me that they also got the same information but thought that the study would allow "extra" patients from other cancers to join in this cohort as well. She told me that they were having a teleconference with the "trial know it all's" on Monday and she would ask for sure.
So I then called Scottsdale back and told them what I had just heard and she was as sweet as ever and told me that today is their teleconference and she would ask and get back with me this afternoon. ARRRRRGGGGGGGGGG!!!!!!!!! Not sure why she is not more proactive!!!!! But I guess the "squeaky wheel gets the worm!"
So now just waiting impatiently for the call after 1:00 pm today! Wish us luck!
Niki

[dianne052506]

Niki,
Good luck. I hope this afternoon's call brings better news. I was so hesitant to share info from this trial to begin with. I didn't believe scan 2 when it said there was some improvement, I would feel so guilty if I promoted something that made a patient worse. Now I wish I had put this all this out there a lot sooner so people wouldn't have to go through this waiting drama.
Dianne

[jgall]

Diane - so good to hear your news!

Niki - you know I adore Matt! Tell him we're over here rooting for him! I hope you can make this work!!! Love you guys!

Julia

[crazymotherof8]

Thanks Dianne and Julia,
Just read my previous post and realized I wrote squeaky wheel gets the worm......ha ha ha ha!! What was I trying to say?????
I finally called the Scottsdale office back this pm and she said the Gentech person was going to see if there is by chance any openings because of someone failing the tumor testing. She said there might be a small chance. I also asked about a new trial they will be recruiting for soon with Anti PD1 but she said there is a huge waiting list.

Sad sad sad...
Niki

[dianne052506]

You'd think Genetech would want as many people as possible on a trial - I simply don't understand. I'll try to talk to Dr. P. again on Monday - work the guilt thing and remind him he told me to try and recruit people and now they can't get in!
I am so sorry, Niki, that they weren't able to give you a better answer.
Dianne

[gep]

I just noticed this trial coming up on the U of Chicago website. Here is the link. It's an anti PD1 drug from Bristol Myers Squibb. I think this may be the study where the colon people didn't do as well but it seems to indicate that they're taking colon people but not recruiting yet at least in Chicago.
http://www.clinicaltrials.gov/ct2/show/ ... ago&rank=3

Anyone know anything about this one? Are these drugs the same or similar?

Gloria

[dianne052506]

I know that BMS-936558 is the Bristol-Myers drug Dr. P. calls the generation before the Genetech drug. It got a lot of good press at ASCO in 2012. Perhaps they are taking cancers that didn't do as well responding to the single drug and are trying it with the combination. It wasn't that colon cancer didn't respond at all in the first trial, it just didn't do as well as RCC and melanoma.

It looks like this is a fairly new study. Even though they're not recruiting yet, they probably will be shortly. It wouldn't hurt to get on their waiting list.
Dianne

[gep]

I will get my husband to get on that list. Thanks, Dianne.
My husband just talked to someone at the health club who said that Johns Hopkins is doing something combining gene therapy with immunotherapy. Anyone know anything about that?
Gloria