First Post-Opdivo Scan - 1272555

Thanks Janine.

Actually we "met" a few months ago when I first posted in this forum in November about the discovery of the liver metastases and you responded with such a lovely note of hope. The info and videos and essays on Grace have been wonderful as we navigate all of the information. At this point we pray the liver enzymes go down, the Opdivo continues, and ends up working. But….

In any case thanks very much to you and all the Grace staff for your support. So, being relatively new to this, should I post updates as continued responses to this same thread, or should I post a new thread for new updates?

Thanks again, and all the best for a wonderful 2016.

Hello again Janine, Jim, et al.

Well, good news and bad news, as they say. The good news is that the two liver function enzymes have gone back down meaning they weren't from the cancer (rather just a temporary side-effect of the Opdivo) and now that they are back down they are going ahead with another two treatments of Opdivo.

The bad news is that the oncologist conferred with a colleague on the scans, and the colleague felt that the new spots/growths were most likely real progressions of metastases and not pseudo-progressions due to Opdivo. However, they still can't be sure, which is why they are going ahead with another two rounds of Opdivo, after which they will do another CT scan and reassess.

If the Opdivo turns out to be ineffective, then we will need to confer (probably with a second opinion) on what the best next approach will be. The oncologist said that my wife did so well on Carbo/Alimta that it would be a possibility again down the road, but he seems to want to try some other newer (probably more directed and less toxic) therapies first.

But in the meantime, on the wedding front we now have the band decided and booked!

Hi Dr. Creelan. Thanks for the insight. The oncologist previously said we might use some HER2 directed treatments at some point, but based on his experience is that they would likely try one of the drugs (like afatanib) that has shown some efficacy with both EGFR and HER2. In the meantime, he is looking at some possible trials in Chicago. On the Opdivo side, he did discuss with us some previous treatments he had done where large reductions did take place, but only after 4-5 treatments, but I do believe (as he warned us) they were in smokers.

So, all liver function enzymes are back to normal and my wife just had another Opdivo treatment yesterday, but we are beginning to think of other options should the Opdivo be ineffective. Our oncologist says he has had some patients that haven't shown response until 3-4 months of treatment but….. One possibility is trying for a clinical trial the oncologist mentioned to us done by one of his colleagues, that he said seems to be getting some good initial results. It is using a targeted toxin, where an antibody targets a surface marker found via genomic screening to be present on a large number of adenocarcinomas. The antibody/toxin is internalized, activating the toxin and destroying the cancer cell. I believe it is a phase 2 trial, likely looking at some dosage/timing issues. Other likely initial possibilities are targeted drugs for the HER2 mutation, or some more carbo/alimta that worked well previously.

While, if it gets to that point of a new option, we are going to have our oncologist confer with another oncologist we made contact with for a second opinion, my question is about what things we need to be thinking about. That is, what factors should we be thinking about when deciding between different potential treatments, and especially between ones that look promising but are relatively untested (i.e. clinical trials) versus others that have already been used more often, but have shown various levels of efficacy. Given the fact that in reality most of the more focused treatment options other than the standard chemotherapy (e.g. cargo/alimta) have only been around for a few years, and therefore are still uncertain as to exactly under which cases they are most effective, what are the considerations one should be using to choose between them? Luckily my wife is still in great shape physically so we have a lot of options on the table.

Thanks!

Thanks Jim!

Alas, it is as we suspected. New CT scan shows that the little micro lesions of last time (probably just localized inflammation from the Opdivo) resolved themselves, although there are a few more of those that have popped up and not to worry about, but….the primary tumor is slightly larger, and there are more small lesions in the liver. The Opdivo is clearly not being effective. We meet with the oncologist on Wednesday to go over options. He said Carbo could be done again since it was so effective, but only down the road, and wants to look into some other options for the time being.

On the other hand, our daughter picked out her wedding dress today (far away from us - but there's the beauty of the internet…).

My wife and I had a great talk with an oncology clinical trial specialist at U of Chic yesterday. As for the previous Guardant test - neither the oncologist or specialist really trusts it (specialist said he had several cases early on where there was a difference between Guardant and tissue staining, and the tissue was right in both cases). So, current plan is to take tissue from a liver biopsy she had last week and test it for both a marker needed for the clinical trial (PTK7) and send some of it off to Foundation Medicine for molecular analysis. The specialist said there is a good chance based on the characteristics of her background and tumor that my wife will be able to either go on the trial or have some targeted medication. The hard part now is going through another set of waiting - about 10 days for the marker tests and about 20 days for the Foundation results. But at least we now have a solid sense of where the plan is for the near future. It would likely be 1) Clinical Trial if markers are present; 2) targeted therapy for Foundation determined mutations ; 3) if neither of those possible doing some rounds of a taxol/anti-vascular combo. It was also a comfort to know that the specialist and the oncologist are working together as a great unified team. But, my guess is that the next 2-3 weeks are going to seem to last forever……

Thanks for the good wishes Don! May you have great results from the Opdivo!

So here's the latest - My wife got approved for a new Antibody Drug Conjugate (ADC) trial, as the biopsy analysis showed high levels of PTK7. So, she gets her first treatment on the trial drug next Tuesday. The Foundation tests on the liver biopsy also confirmed the Guardant test, in that it is an HER2 mutation. So, if the trial drug doesn't work, or when the trial drug stops working, my wife will likely go on afatinib, which has had some pretty good results for HER2.

Let's hope for some great results from the trial drug from Pfizer!