My 58 year husband had a history of Barrett’s disease and following a routine endoscopy, was diagnosed with esophageal cancer. Following a PET/CT scan it was determined that his tumor was T3 N 2 and neither surgery nor radiation were options at this time. He entered a clinical trial and was randomly assigned to the arm of the trial which is infusions of Nivolumab plus Ipilimumab. He has had 1 infusion and is to return to MD ANDERSON for a second infusion next week. He continues to remain symptom free from both the cancer and potential Side effects. His pre-study testing showed his tumor was positive for PD-L1 and pan-keratin. My question is whether you know of any studies or clinical trials that have already been done that have showed good results? In this study CT scans are done every 6 weeks and the waiting is agonizing. He is beginning to think of pulling out of the clinical trial and just getting straight chemo. Thank you.
T3N2 esophageal cancer, treated in Phase III double immunotherapy clinical trial - 1293431
aetemple
![]()
Posts:1
Forums
Reply # - November 1, 2017, 10:39 AM
Hi aetemple,
Hi aetemple,
Welcome to Grace. I'm so sorry your husband and you are going through this. Unfortunately Grace doesn't have specific information on esophageal cancer.
Immunotherapy is a new-ish class of drugs that is changing outcomes for many people, especially those with high concentrations of PD-L1. Research is ongoing to answer questions like, is a combo of 2 drugs better than one or will it just add too many side effects.
There are no set standards for when to scan follow ups.
This is an edit to to my original post about timing of follow up scanning: '6 weeks is on the short short side 6 weeks is on the short side of scanning often scans are scheduled in 3 month intervals. If taken less than 6 weeks apart there's likely not to be enough of a change to determine efficacy.'
I'm sure your husband's oncologist instructed him to let them know of any new or worsening symptoms. This is a typical way oncology teams work to mitigate anything new that may need a closer look including taking a CT earlier than planned.
Dr. Weiss said, "My strong personal opinion is that the best care available to most patients is on clinical trials. I’ve cut my income into a third by becoming an academic doc for the privilege of designing clinical trials to try to improve the standard of care. I passionately believe that many of our trials regimens are very promising to be better than existing standard of care, which, frankly, is not good enough. I have no doubt that if my father were to develop lung cancer, that I would seek the best available clinic trial for him. In my opinion, seeking good clinical trials is the most important reason to seek out a second opinion. Clinical trials are not the best choice for every patient at every time point, but I feel strongly that optimal care should at least consider them at every major decision point." http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-s…
cont'
Reply # - November 1, 2017, 10:50 AM
http://cancergrace.org/cancer
http://cancergrace.org/cancer-101/2013/01/27/ramalingam-clin-trials-pt-…
http://cancergrace.org/cancer-101/2013/01/18/how-are-clin-trials-develo…
http://cancergrace.org/cancer-101/2013/01/06/clin-trials-ramalingam-pt-…
Above is a series of video posts about the trials that may help give you and your husband a better understanding of the clinical trial process.
The trial seems very promising especially since he's not had any side effects. Normally oncologists want to remain on a treatment until it proves no long effective before moving on. There are only so many options so giving up on one before it's shown not to be helpful is usually discouraged. Of course this is your husband's choice. Waiting is so hard, everyone who's been through a cancer diagnosis knows it's one of the hardest parts.
We'll keep you and your husband in our thoughts.
All best,
Janine
Reply # - November 4, 2017, 03:59 AM
Clinical trials are different
Clinical trials are different than regular treatment as far as follow-up. And anyone I know who has done a trial has said they like the idea of the closer follow-ups. Being a trial, they're looking for not only side effects but if and when you respond to the treatment. With immunotherapy in normal use, they're not usually scanning until after 6 infusions. This is what I've learned from fellow lung cancer patients.
Immunotherapy is working with your body to help fight the cancer and eventually build up your immune system to fight on it's own, hopefully. I say, give it a chance as he's only had one infusion. Good luck!
Take care, Judy