sandynyc

Thank you Lainy and Chris – as always – for bringing me back from despair, and putting a smile on my face.
Thanks also PCL and Marion for weighing in. Your support, experience and insight are invaluable.
So based on the feedback we went over today to see Doctor Fong – we would have seen him immediately upon hearing the latest developments but today was his first day back after a week of conferences.
He was actually very pleased with the liver – back in July when we started Chemo he said that ALL the blood vessels were constricted and Dave could well not have made it to August. Now they were all open,and the original tumor was down in size again, this time to 8 cm. He was not particularly concerned with the second tumor in the liver – all the original satellites he burned off during Dave’s surgery no longer appeared. He felt strongly that the FUDR was still the most effective way to treat this that they had found – also he was thrilled all the Markers were normal.
Of course he was less happy with the bone lesion – he said this would not be a killer, but rather a quality of life issue (rather than a longevity of life) as it had the possibility of causing a significant amount of pain. He said he was glad there was only one, he could easily have seen a number appear and that one alone was a very decent sign. He set us up to see a Thoracic Surgeon tomorrow to evaluate whether it made sense to remove the rib in order to do away with the pain – his biggest concern was that having surgery would mean stopping Chemo and that was probably not a good option at this point. He was more inclined to see what Dr. Yamada would say regarding Radiation options.
I asked about Clinical Trials – he said that would at some point be an eventuality, but really was a last resort and something we would explore only when the Chemo stopped working. He felt strongly we were pursuing the best Chemo combination out there, one that had demonstrated the greatest success. Same for Molecular Profiling at this stage.
Overall, feeling a lot more positive and less helpless than before meeting with him. Felt we left with a game plan and a much better understanding. I think Dave also felt a lot more hopeful. All in all, a good day!

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

Thanks so much Lainy – you are always the best!!
Actually he watched the end of the Yankee game first – fortunately they won – and then crashed big time.
Sadly I have to head to Atlanta tomorrow for business, but our daughter will be home after work to be with him.
Breakfast in bed sure does sound nice though!

SO we had our 3rd appointment today with Dr Kemeny. Full of anticipation! We got there 30 minutes ahead of the 11:15AM appointment as they request (I suppose to take bloods etc). We finally saw her around 1:30PM (they said she was running late). She informed us Dave would be getting a 50% strength dose of FUDR and a second round of the Systemic Chemo. Of course it took a while to prepare the cocktails so we sat, went out and had lunch, came back and sat and sat. Finally at 6PM the chemo was delivered and we were brought into the Suite to begin the 3 1/2 hour ordeal.
Dave had lost 15 pounds since the last appointment exactly 2 weeks ago so they reduced his self-administered blood thinning injections from 2 a day to one as they are based on body weight, and took him off the Lisinopril he had been taking for high blood pressure as he was now around 106 /60.
Also took him off the diuretics as he was so dried out and dehydrated they couldn’t even get the IV into him to administer the chemo until they wrapped his arms in hot towels for 15 minutes.
After a total off 11 hours there he got home exhausted and glad just to be able to lie down in bed and be comfortable.
Waiting to see what this round brings.

So, this is what we have been up to since last I wrote.
Last Saturday we went to MSKCC Urgent Care as Dave was feeling really awful. They did a CT Scan and sent us home in the early morning hours.
Very early Sunday morning we were called to come back in. They found a pulmonary embolism is Dave’s lung and decided to admit him to the hospital. We were there Sunday through Wednesday. They did another CT late Monday to see the upper chest area. They put him on blood thinners to prevent additional clots. The Celebrex appeared to take care of his daily temperature spikes, but he continues to have outrageous drenching night sweats. Wednesday just prior to his release they drained the FUDR (this was Round One) from his pump as they were concerned with the spike in his liver enzymes. This was a big shock to us as we viewed it as a setback – only 9 days with chemo in the pump instead of the planned 14 day cycle.
He also is starting to experience shortness of breath and is tired all the time but still sleeping poorly. I wish he had a good hobby – the days and nights seem so endless.
Today we are back at MSKCC for our regular 2 week visit to Dr. Kemeny. She said she was very concerned – the large tumor was unchanged in size but one of the small ones on the opposite side of the liver had grown quite a bit and she was concerned it was not responding to the chemo. so she switched the plan for today’s first round of systemic chemo to a 2 drug plan – first Gemcitabine followed by Oxaliplatin.
Watching the drips now, a couple more hours to go. Keeping my fingers crossed for better results!!