New member — Wife recently diagnosed with ICC

Hi Snowbird,

A lot has happened since that last update. True to form, it has been a rollercoaster. The news is mostly very good, and for that I am thankful.

Since being diagnosed, Andrea has been doing Gem/Cis cycles. She just finished her 8th 3-week cycle. So for us, the rollercoaster has not been in the realm of treatment, but rather in the changing view of what might be next, and how it might all unfold.

Andrea has had two follow-up CT scans (one after 3 cycles, and one after 6 cycles). Both scans showed substantial shrinkage. After the second scan, we decided to cast a wider net and get formal 3rd/4th/5th opinions from the big cancer centers in the area / country.

UCLA
We first got a consult with Dr. Finn from UCLA. I had identified UCLA early on in the process as one of a few institutions with a transplant program that included ICC. The tumor board at UCLA had actually informally reviewed Andrea’s case after each of her three scans. The news was negative after each scan — Andrea was not currently a transplant candidate. The purpose of the meeting with Dr. Finn was to better understand the rationale.

Based on the discussion with Dr. Finn, UCLA does do ICC transplants, but no one is a transplant candidate initially. He explained their philosophy as cholangio is either “good biology” or “bad biology.” If you had good biology, a transplant was a possibility. “Good biology” wasn’t a biopsy test, but rather was defined as stable / chemo sensitive cancer for 12-18 months. Essentially, if you have longer term control of the cancer they will consider a transplant.

This actually sounded pretty good since early indications are that Andrea’s cancer seems to be “good.” However, Dr. Finn was not bullish in Andrea’s case. The team at UCLA had noticed that lymph nodes near the liver had shrunk across scans. Lymph node involvement was a deal killer, and their best guess was that lymph nodes were involved. The bar would be very high to convince them that the lymph nodes were not involved (a negative biopsy would be helpful but not necessarily conclusive).

UCSF
We next had a consult with Dr. Kelley at UCSF. The reason for this consult was to get their thoughts on the short/intermediate term treatment plan. Andrea’s blood counts are drifting down, and we might need to take a chemo break and/or change treatments for a while, so we wanted to get more thoughts on what would be the right next steps.

Given our UCLA experience, we were definitely interested in their thoughts on lymph node involvement. Initially, they had an indeterminant view. The lymph nodes did show slight shrinkage, but they might have been swollen as an immune response rather than cancerous. However, after their team review, they also came back with a view that the lymph nodes were likely involved…bummer.

Radioembolization
Up to this point, the general plan had been to do Gem/Cis until it “stopped working” (could never pin down if this meant stable or shrinking) or until the side effects were intolerable. After that, the treatment recommendation was radioembolization. I had done some research on radioembolization, and had some concerns about the whole-liver procedure suggested by Stanford (see other posts for more info). Since UCSF does radioembolization also, we decided to get a second opinion from them.

We learned a lot about the procedure, and found out that UCSF recommends a sequential lobe instead of a whole liver treatment (like most everyone else). We would probably have the procedure done at UCSF, except…Andrea is “not currently a good candidate!” Here we got really good news. According to both interventional radiologists (at Stanford and UCSF), Andrea’s scans indicate too little viable cancer to warrant RE. In fact, the UCSF doc said “all I see in the scan is dead cancer”

With RE, you need blood-hungry cancer active in the liver to make the process work, otherwise you are just uniformly irradiating the liver (instead of selectively irradiating tumor).

So that is pretty much the current state of things. We are feeling great that Andrea’s cancer seems very sensitive to chemo. We are shocked that only “dead cancer” is visible. At the same time, we are bummed that the prospects of a curative transplant seem to have faded.

Andrea’s next scan is in the middle of October. MD Andersen (Dr. Javle) is doing the scan and will be reviewing the case. Hopefully the chemo will stay effective and a promising long-term strategy will appear…

Jason

Quick update

Dr. Kato regarding resection:
Dr. Kato reviewed Andrea’s images and reports, but was unwilling to resect. The main issue was the number of sattelite leasions. He didn’t think he could remove all the cancer and leave a viable liver behind. He also thought it would not be helpful to the prognosis to have surgery, but leave behind a number of cancer cells.

Dr. Chapman regarding a transplant:
Dr. Chapman actually reviewed Andrea for resection and transplant. Andrea however is not a candidate for either. Similar concerns as Dr. Kato for the resection. For the transplant, I found out the Dr. Chapman is following the Mayo protocol. As such, he does not consider a transplant for ICC. I asked his assistant if they had ever done an ICC transplant. Her answer was “We have never knowingly done an ICC transplant, however, we have done some transplants that we found out was ICC after the transplant occured.”

For now Andrea is getting Gem/Cis and is reponding well (shrinkage the last two scans!) We are still hoping surgery becomes an option at some point in the future.

Jason