FOR ALL ON CLINICAL TRIALS (edited name)

[SoConfused]

Hi all, good news here. I got my scan results this morning and the disease is stable, so I will be going on the trial extension.

Fantastic news! very pleased to hear this is working for you and hope you continue to do well (even better) on this therapy.

[usopen]

Theresa,
Great news!!! I, too, was thinking about you. Good news lately with the non-chemo.

Joan

[gep]

Theresa,
Thanks so much for letting us know. It's a lift for everyone.
Gloria

[gep]

Found this on a kidney cancer blog about folks on PDL-1 and PD-1 trials. Scroll down and someone explains the difference between the two drugs.

http://csn.cancer.org/node/248532

[crazymotherof8]

Dianne,
I haven't had a chance to read the information you posted but it seems like it would be a good thread that should be a sticky that is at the top of the board, or maybe could be included in the terminology and abbreviations thread?? Maybe ask a moderator?

[crazymotherof8]

Information that I learned today at Pinnacle Oncology where Matt is starting a clinical trial:
We were able to meet the research doc, Michael Gordon, today and so I was able to ask him all of my questions regarding PD-L1. This is what I learned. He said that the only good stats they have right now are for non small cell lung cancer patients. It seems that 1/3 of patients will have the protein and if they do they usually have a very good response. So the whole 6% information that the research nurse gave me last time was bogus.

He said also that if a patient (again I believe this is from the nsc lung data) does not have the protein the chances of response are about 9%. Because most of this trial is now going to require the tumor testing this data will improve and soon will we will know more about how the presence of the protein affects other cancer patients.

I asked him if he thought it was worth Matt traveling to CO to get on the Folfox/PD-L1 trial and he said if he had had the protein then yes, but without it he does not believe it is worth it. This was the information we were looking for as we did not want to travel there and Matt did not want to go back to Folfox if the chance for success was low.

I like Dr. Gordon a lot as he is very direct and doesn't treat us like we don't know what we are talking about. He showed us the data for the trial that Matt will be starting on Thursday which is a drug called TRC105 and Avastin. They both are the same type of drugs that cut off the blood supply to the tumors and it is showing some very good data, even with those who had failed with Avastin previously. He had specific data for colorectal patients and he showed us the ct pics of several crc patients where there was a clear response in the liver. This is not a dose escalation but expansion trial and has only the typical Avastin side effects. We left the clinic more hopeful. I am in touch on the cancer survivors network with another caregiver whose mCRC husband has been on this trial since Oct. and is stable with some response. He is not having side effects except for fatigue which she said is a lot less than when he was on chemo. I wonder if the fatigue ever goes away? I think when you are tumor loaded and have been beaten down by chemo the body can never reallly feel like it used to.

I am so grateful for this thread and the fact that we are helping each other spread the word about clinical trials. When I first brought up the idea to Matt's onc because quality of life was becoming a huge problem, he told me that if we wanted any quality of life then clinical trials was NOT the way to go. After I pushed him and told him about Dianne's success he did some research and calling to a research center and then changed his opinion. What if other oncs do the same and don't encourage their patients. We obviously see that many do not help their patients find suitable trials and like others have mentioned, you feel as though when the chemo is no longer working you are no longer important to them. Sorry just a little rant tonight as I am not happy with the whole system.

I am so happy tonight for the good news about Skypup and pray that Dianne and Darrell will continue with their good news!
Niki

[skypup]

Niki, I am so happy for Matt that you found a good trial that doesn't include traveling! Or folfox!!!

Not just the onc's have misconceptions about clinical trials. I was waiting for Rx's today and got into a conversation with a woman whose husband has lung ca. He's been given about 3 months (after 3 years) and he is still on chemo, worn to a frazzle. I asked if they had checked into the possibility of a trial of some less toxic drug, and she told me that their doc had mentioned working outside of the box some time ago. Her husband's response had been "no way I'm going to be a guinea pig!"

Clinical trials may not be magic, and some are pretty nasty stuff I'm sure, but standard chemo until we're worn out is no great treat either.

You know, when I let myself daydream, I dream that one of us is the lucky one that just happens to be in on the thing that finally breaks mCRC's back. And then that one tells the rest of us and we all celebrate in ten years in Hawaii!!!

[crazymotherof8]

Skypup,
I LOVE it!! Dreaming of Hawaii tonight!!
Niki

[vickitwo]

Hawaii in ten years with everyone cured of this cancer would be AWESOME!!!!!!!

[KarMel]

http://www.cancer.gov/clinicaltrials/se ... 0000683241


This is an immunotherapy trial at NIH. ANy one know anything about? Or on this trial, looked into it?

I am going to send for more info.


Karin

[crazymotherof8]

karmel,
this trial sounds interesting. please post any info you get about this trial, both good and bad. i think it should be noted that I heard that NIH trials pay for all travel expenses. Have you heard this as well? If so that would make this trial more accessible to us.
Niki

[gep]

Don't know anything about this trial.
No PDL 1 testing for my husband at Sarah Cannon right now because the drug company won't approve it.

Karin,
I'm really hoping that you find something that works for you soon.
Cyber hugs.
Gloria

[KarMel]

karmel,
this trial sounds interesting. please post any info you get about this trial, both good and bad. i think it should be noted that I heard that NIH trials pay for all travel expenses. Have you heard this as well? If so that would make this trial more accessible to us.
Niki

I have heard they pay travel expenses, too.
I got on the phone with nurse after I sent an email requesting more info.
First, they need to review all records of treatment, scans, etc.
Then, if I pass that, I get a in person consultation.
The next week, if all ok, I get a laparoscopic biopsy of the tumor.
After that, they grow my leukocytes to get this TIL stuff. Then back to NIH for 3 weeks for treatment. There will be some misery. At least 3-4 days after injected with the designer leukocytes, you feel like worlds worst case of flu.

Then weekly visits for follow up. Scan after a couple months. If you are responding, you may get to repeat treatment.

I am gathering up records to mail them to nurse coordinator.

[Maia]

Karmel! This is wonderful... you would be in the hands of one of the best specialists in the world on immunotherapy for cancer -- Steven Rosenberg. Breakthrough in treatment of cancer, specially melanoma, has came from him and his team. This is his current research at the NIH .
Fingers crossed for you! All body parts crossed, actually : )

[Maia]

Niki, I just read the good news about Matt getting into that trial... happy for you both!