bluebird21

Hello All,

The stent that was put in last Thursday is not working. His bilirubin went from 8 to 10. I just talked to the interventional radiologist who said the only thing he can offer is to try to decompress the left lobe from outside (surgicially with the bag for outside drainage), but he doesn’t think it will reduce his bilirubin below the 2.0 limit for further treatment options (radio embololization, chemo trial). Jack’s right lobe is completely filled with tumor, so they can’t do anything for that side. He wanted us to consider whether to have this procedure done, in light of everything. He was not optimistic. He told us to call him back later today with our decision. Personally, I want to go forward with it, because we have no other option. My husband is sleeping, so I will talk to him when he wakes up, and also talk to the chief oncologist. Jack has been groggy and not lucid since the stent was put in (he was getting forgetful the last two weeks), and he is so yellow from the jaundice. The doctor talked to us last week about hospice care. Should I be bringing them in now? I don’t know too much about it. I have been taking care of him and have family staying with us now to help out.

Thank you so much!

When my husband was diagnosed in June, we went to Johns Hopkins (Dr. Pawlik), George Washington University (my husband’s cousin worked there as a head nurse and recommended someone), and Georgetown (Dr. Marshall). Johns Hopkins advised against surgery since it was already in nearby lymph nodes and recommended the GEM/CYS chemo combo. George Washington University basically told him there was nothing that could be done. The head of the liver transplant center at Georgetown felt he could remove most of the 6-inch tumor in his right lobe, but when he operated, he found rice-grain sized tumors in the left lobe, so he closed him up. He had to heal for 4 weeks then entered a trial of Xeloda, ceterizine, and temsirolimus (I think I got the names right). He had 7 out of 10 treatments, but his platelets were taking a beating. We found out Monday that it didn’t work, and the cancer had grown. It is pushing his liver over to the left and against his stomach, which is now compressed to half the space it should occupy (so he is eating small, frequent meals). He meets tomorrow with the interventional radiologist at Georgetown to see if he is a candidate for targeted chemoembolization. He has to wait 4 weeks after the last trial to enter the next one. The next one is NCI 8735: A Multi-Institutional Phase II Trial of the Akt Inhibitor MK-2206 in Refractory Biliary Cancers. It’s from Ohio State.

Finally got around to giving you all an update. The doctors lowered his capecitibine dose and the mouth sores went away (he occasionally gets one but nothing like what he was experiencing before). They said that all of the trial patients got the sores initially. The main issue we have now is that twice he had to skip chemo because his platelet count was too low. He is scheduled for a CT scan on Oct. 5 to see if the trial is working. The doctor said that if he continues to have low platelets, he may have to discontinue the trial. Hopefully the trial is working and his platelets will rise.

Thank you so much, Nancy. It’s interesting how some people can lead healthy lifestyles and get cancer while others defy all the recommendations yet don’t get cancer. My husband jogged for 40 years, didn’t smoke or drink (well, maybe one beer a month if that), ate well, and always got his physicals, colonoscopy, etc. CC is one of those silent cancers, like ovarian cancer. Most people don’t realize they have it until it is advanced. I do wish his doctor had taken his pain more seriously and had him go get an ultrasound, though. I don’t know when it started, but maybe they could have done something earlier. I know there is no point in looking back, but you can’t help but do so. Thank you for your kind wishes, though.