Though I haven't posted in awhile, I check in very frequently, mostly daily, and read each and every one of your posts and updates with great interest, caring, excitement for the good news, and heartfelt pain for the disappointments. I still know so dreadfully little about this horrible disease (to paraphrase Lainy, writing its' name would give it too much credit), and still feel so overwhelmed by the diagnoses, side effects, options available.
Dave had his pump installed on June 24th. He began Chemo in July with FUDR being administered directly via the Pump , alternating every 2 weeks with an off cycle of steroids and nutrients. In addition he was getting systemic chemo every 2 weeks -Gem/Oxy.
He had his first follow up scan in October at which time Dr Fong did the greatest happy dance ever as he delivered the news that the tumor on the Right side of Dave's liver had shrunk from 14cmX9cm to 9cmX5cm, a reduction of close to 70%. He was beyond thrilled and confirmed we would continue the regimen we were on and meet again in January to reevaluate. He continued to hope that removing the tumor at that point would be a possibility, but restated that would be dependent on shrinkage at that point as well as evidence of spread to the other side.
After losing close to 35 pounds, feeling exhausted, winded, barely able to
get out of bed for all of July and August, all of a sudden in September it was as though a switch had been flipped and he said he felt as good as he had ever felt! His energy was back and much of the weight crept back on.
Then the last 3 weeks he was feeling worse and worse by the day. Tired, winded, constant pain even though he was taking Oxycontin regularly, running daily fevers around 100.1 to 101.0 and just all around lousy. When he went in for his bloods this past Monday and appointment with Dr. Kemeny all his bloods were still very good, all within range, with the exception of slightly elevated White Blood cell count. Dr Kemeny was concerned that with the elevated count in conjunction with how he was feeling he had an infection so she cancelled chemo for the day and sent him for a Scan.
When we returned Wednesday for the results, Dr Kemeny was as somber as I had ever seen her (guys- those of you who have been treated by her and have written here about her - this was DIFFERENT) - she sat with us for a long time. She was beyond shocked to have found a second NEW tumor of good size in the liver and a lesion on the bone on his lowest left rib. She prescribed a PET Scan next week, and an appointment with a Radiologist December 18th to begin Radiation treatment.
We did our chemo that day (the FUDR plus the Gem/Oxy)plus she added an injection to treat the bone as well as a prescription for Xeloda complete with all the warnings that seem to accompany that drug.
She wanted to double the FUDR but decided to hold off until next round just to minimize introducing too many variables all at once.
As you can imagine this news was a devastating setback - we completely were prepared that at some point the Chemo would stop working but were completely unprepared for all this at this stage.
This is where we are at - Dave is destroyed and I have no idea what to think or what I need to do. Any/all wisdom or feedback gratefully appreciated