Hi All- I haven't posted in a long while - but I read everything on this site every day - sometimes it makes me scared, sometimes angry - but lots of times it does give me hope - and it always fills me with wonder at the compassion, caring and love you all share.
My husband Dave was first diagnosed with CC in May of 2013 and what a "long, strange trip it's been".
After multiple opinions, we settled in on MSKCC (Memorial Sloan Kettering).
From when we first found the tumor in his liver, to when surgery was scheduled, the tumor grew from 9 1/2 cms to 14 cms.
Dr Fong operated but determined that a resection was not possible, due to several satellite tumors - he determined there was not sufficient good liver to regenerate. He burnt off as many of the satellites as he could. At the same time, he also implanted an intra-hepatic pump which would be used to administer Chemo (FUDR) directly to the liver.
We then met with the Oncologist, (July 2013), Dr. Kemeny who would be administering the FUDR into the pump while also administering systemic chemo, Gem/Oxy every two weeks. Dave tolerated the Chemo treatments very well and experienced minimal side effects.
They always told us a time might come where the Chemo would stop working.
After losing 35 pounds over the first few months, and barely getting out of bed due to being so tired and short of breath, all of a sudden it was like a switch had been flipped and Dave came back to life, for the most part pain free and energetic. And the weight came back along with his appetite.
Dave remained on the regimen until December 2013 when they found that the cancer had spread to his left lung (very minute) and ribs - the pain was excruciating as it had penetrated the bones -
He had surgery Christmas Eve (also the eve of his birthday) - they removed ribs 5,6 and 7 and put in mesh to protect the now exposed chest cavity. They also cut some of the lung to insure there was no spread from the bones. The recovery was very painful but the relief of getting rid of the ribs provided enormous - going forward they added Exgeva to the regular treatments to protect the bones.
2014 started off so much better - After all the pain, exhaustion, shortness of breath, Dave really enjoyed a quality of life
After about 9 months of the Gem/Oxy cocktail, neuropathy began to set in so the Oxy was replaced by Teecan (Irinotecan).
In November 2014 after 17 straight months of Chemo every other week, our Onc, , Dr. Kemeny determined based on a CT Scan that the Chemo was no longer working - the spread to the Abdomen had become extensive, and the 2 newest Liver lesions had doubled in size. The original liver tumor which had been reduced dramatically in size and then dormant, had begun to increase in size again.
The tumors in each lung remained unchanged and very small.
At this point we began to review the results from the Gene testing done earlier in the year to explore the availability of Clinical Trials.
Our Onc determined that the Agios AG-120 trial was a strong option, as it was targeted at IDH1 mutations, the exact one that the testing had identified. IDH1 mutations appear to be present in about 35% of CC patients, and particularly present in Patients with longer survival rates,
Unfortunately we had to wait a minimum of 3 weeks from treatment to even be considered for any Clinical Trials so Dr Kemeny suggested we cease treatments immediately in order to be ready should a spot become available. Unfortunately MSKCC did not get the spot they anticipated getting in December, but January 2015 we were informed a spot had become available and it was Dave's!!!
We couldn't have been more excited as this Trial seemed so promising for Dave's particular mutation.
We started on February 1st. As per the trial guidelines, we reviewed CT scans and bloods on the 56th day - unfortunately the liver tumors had continued to grow and Dave was feeling considerably weaker, and very short of breath. So the decision was made to take him off the trial.
We revisited the possibility of putting Dave back on chemo, but the Onc was concerned that might preclude Dave from being considered or eligible for any other trials.
Today we met with another Doctor and his team who was also running a trial : a Glutaminase Inhibitor CB-839 targeted at Patients with advanced Solid Tumors.
We are awaiting confirmation Dave is eligible based on recent PET scans, biopsies and bloods.
If accepted, we begin next week.
What else should we be considering?