I can't believe how long it has been (7 months!) since I officially updated this thread.
As I said in November, we had this plan:
"We have decided to continue on Gem/Cis at Stanford until January, and then switch to UCSF and do IMRT + Xeloda."
and that is pretty much what has happened.
Andrea had her last Gem/Cis treatment Dec. 18. In total, she was one treatment short of twelve cycles. Overall, she handled the chemo really well. A little tired, and a little hair thinning, but pretty manageable all things considered. Towards the end of the treatment though her blood counts were starting to get low and not rebounding quite as quickly as earlier.
The net result of chemo:
-Main tumor 1/3 original size and PET inactive
-Two satellite "medium" tumors significantly small, necrotic looking and PET negative
-"Constellation" of tiny tumors no longer PET active or visible
Pretty good from where we started.
In late January (2014), Andrea started IMRT radiation therapy. The plan was to irradiate the area around the main tumor. The logic given was that this tumor would be the one most likely to cause problems in the future, and that all the shrinkage gave an opportunity to treat it within a manageable IMRT field. The treatment regime consisted of 28 days of radiation (5 days a week for 5.5 weeks).
Radiation, it turned out, was much harder than chemo, both mentally and physically. About halfway through treatment, Andrea was having difficulty keeping down any food or drink. This lasted throughout the remaining weeks of treatment and didn't really start improving until 3 weeks post treatment. During those weeks, Andrea lost 15-20 pounds and was very weak. Mentally, the challenge was to get up every day and go to another treatment when you knew that was what was causing you to feel so lousy.
Andrea had her last radiation treatment March 5. I guess you never know how you will respond. During chemo, the side-effects for Andrea seemed easier than advertised, but just the opposite was true for radiation.
Andrea also took Xeloda (aka capacitabine aka 5FU) during radiation, since that supposedly helps the effectiveness of the radiation treatment. Since radiation was only treating the main tumor, the Xeloda also acted as systemic therapy for the other tumor areas.
Andrea got her first post radiation scan in late March. Good news. The treated areas looked as expected, and the untreated areas looked dormant (looking at the untreated areas was actually the purpose of the scan since they said it was too early to evaluate the radiation region).
At this point, the oncologist suggested a treatment break until June. The idea was to let Andrea recover from the radiation, and then see what happens to the tumors. If all remained quiet, the likely path would be localized treatment to each "medium" tumor. If there was a recurrence, then that would dictate the treatment path.
By April 1 (Andrea calls it her "Canniversary"), Andrea was mostly recovered from radiation, and quickly getting her strength back. When not knocked on her butt from radiation, Andrea likes to be active and involved. Her new passion is fund raising for CCF...you will all be hearing more on that later!
It is now mid-June, and the last two months without treatment have been fantastic. Andrea feels great, and things seem almost normal. We even got to spend a week in Paris. Neither one of us had ever been to Paris, and it was fantastic. Since the diagnosis last April, I think this was the best two months that we have had.
However, everyone says that this disease is a roller coaster, and I can see that more and more. We just got the results from Andrea's June PET/CT scan, and the news was not good. Two new tumors in the liver. One is 1cm and one is 2.5 cm, both PET active.
We don't have much in the way of details yet (we see the oncologist next Monday), but that seems like an awful lot of growth if nothing was showing up in March. My theory is that since the March scan was not a PET scan, but only a CT scan, they missed the beginnings of these tumors. I will find out more in a couple of days.
I guess the one positive is that the tumors are still contained to the liver. The report also indicated that no lymph nodes showed signs of involvement. Still a major bummer.
So that is the latest. Hopefully, Andrea can get back into the "good news / what's working" column soon.