I still mostly lurk here on a regular basis, and read many of your stories. I'm happy to see the positive news from so many.
I'm sad to be the bearer of bad news.
My wife and I searched for clinical trials since the end of March through the summer and into August.
All to no avail. Either we were on wait list and trial filled before they got to her name, or more often than not, protocols changed and either she no longer met inclusion/exclusion requirements, or the openings were pushed months back waiting for formal approvals from pharma/institution conducting the trial.
We even had some initially positive responses for the TIL trial at NCI. I submitted my wife's medical docs for a KRAS (G12V) trial that popped up this summer. And the NCI admitting nurse called me back wondering if my wife would be interested in the TIL trial. Of course we would be!
They really liked her because of the easy access to her supraclavicular tumor. They liked everything they read in the documents and scans they saw, though they were concerned about the numerous lung mets, small though most of them were.
So they asked us to come out to Bethesda and have more scans, meet with more nurses, docs, and surgeons. We did that over the course of two days the first week of August.
My wife was still quite healthy and mobile, which surprised the admitting nurse some.
She had developed somewhat of a consistent cough toward the end of summer, which we knew was from the lung mets, but the medical team didn't seem too concerned about it.
After all our meetings, the chief surgeon and post doc fellow said they would recommend her to be included at the next committee meeting on Monday. They even began planning when she could fly out to remove the supraclavicular tumor and we also received permanent photo IDs since we would be visiting often. We left that thursday with high hopes, even though going in to it, I new her numerous lung mets would be a difficult hurdle to overcome, especially since there is quite the delay between tumor removal and reinjection of harvested T-cells three months later. In other words, a lot of time for cancer to grow.
Still, the evaluation team after all their scans, tests, and probing, wanted to admit her to the trial. So I figured we had a good chance.
Monday came though with bad news. The committee denied her acceptance to the TIL trial because they were too worried about the lung growth, especially since they had grown about 20% in between scans that were 5 weeks apart.
That was a rough moment.
As none of the other trials were working out, we knew we needed to start something. So she decided to begin Longsurf at the end of August.
Well, then Harvey came and messed everything up around here. We couldn't get to MD Anderson for two weeks to get the Longsurf pills and other medication.
Meanwhile she began narcotics to help with the increasingly frequent coughing and shortness of breath.
So she began longsurf mid september and did two rounds of two weeks on, two weeks off.
At the end of the second round, she was tired of chemo, and wasn't sure she wanted to do the third round. Her Onc scheduled three rounds with blood work in between and scans at the end.
But her blood work after second round showed that her WBC was too low, so she would have to delay beginning of 3rd round anyway. Plus suddenly her CEA spiked to 8.9. That when CEA has never been above 2.1 during anytime in the past 3 years with this disease, not even pre surgery. CEA simply wasn't a marker for her. Until now.
The doc decided to do scans so we could see if longsurf was even working, and she didn't want to continue if it wasn't. Stivarga was out in our minds as sooo many doctors we met during clinical trials searching seemed to think it was a good thing we hadn't tried it yet. She didn't think the likely huge decrease in quality of life with Stivarga was worth any potential gain.
Well, scans came back about two weeks ago, and nothing was good. The lung mets have all grown, and now consolidated in some areas. She has new lymphangitic carcinomatosis and lower lobe predominant diffuse interlobular septal thickening.
Increased size of supraclavicular, aortopulmonary window, bilateral hilar, and subcarinal metastatic lymphnodes. Increased size of retroperitoneal (aortocaval, etc.) lymphnodes, and common iliac lymph nodes.
3mm hypodense spot in liver was also seen, likely cancerous, and right ovary now 5.5 cm that is considered metastatic along with increased size of left ovary.
oh, and her CEA was now 13.8, a jump within just a week or two.
Like I said. Nothing good.
Doc was great about giving us the bad news. It was tough for him because she is about his age. He recommended we begin hospice, which we have.
She now needs oxygen regularly and moved onto more morphine to help with shortness of breath and hydrocodone to help with persistent coughing.
We don't know how much time, but doc thinks 4-8 weeks.
It's a difficult thing to swallow, even though we honestly didn't expect good news. We both could sense that the cancer was growing and that Longsurf wasn't helping.
So we'll live our lives as much as we can, pray and hope that she gets to see her 41 birthday, Christmas, and the New Year.
Thanks for your continued help and support as I've reached out to the board in general and some of you in particular to get some help and guidance as we proceeded down this journey.
I pray and hope most of you fare better.
DH to wife 38, DX 12/14, Rt. clctmy Xmas
St. IIIB, pT3N2aM0, 4/27 nodes, mod. dif
KRAS (G12V), APC, TP53, MSS, vasc/lymph/perineural +
TX FOLFOX 1/15-6/15 (4 no oxi)
7/16 mets to retropertnl, iliac, supclavic. nodes
TX 9/16 FOLFIRI+Avast
1/17: Numerous bilateral lung mets; nodes stable/growth; FOLFIRI fail
TX 1/17 FOLFOX+Avast.
3/17: lung mets grow/new, nodes stable/growth, FOLFOX fail
no clinical trials
TX 9/17 Lonsurf
11/17 growth in lungs, nodes; mets to ovary, abdomen, and likely liver