My 42 year-old husband

Patrick’s MRI was clear!!! We were so relieved! That means that he can continue receiving gemzar/cisplatin. He has started to get GCSF after every chemo dose, and they are trying to get insurance to approve the longer lasting version. Yesterday, he vomited for the first time since beginning chemo in February. It might have something to do with the fact that the other 3 people in our household have sky high fevers and nausea. Thankfully, his oncologist put him on antibiotics when the first kid got a fever, so Patrick has not developed a fever.

He will be scanned again near the end of June. The oncologist said that scan would be a CT or PET CT, and would be a larger field that the MRI.

His genetic testing showed that he has the same BRCA1 “variant of unknown significance” that his mother has. She had breast cancer at age 38 and 63. Two of her three siblings also had cancer, one dying at the age of 52. The news was not shocking, but good info to share with the rest of the family.

Here is an update. My husband was released from the hospital on Dec.30, after a 30 day stay. He went home on IV antibiotics that finished on Jan.14. He had his abdominal drain (for a second abscess that developed) removed on Jan. 16. After repeated vomiting in the hospital, he has not vomited once since returning home. He is able to eat most things that he wants to eat. He has lost 20 pounds since November, but he is just starting to gain some back.

All scans show NED (as they always have, even when they knew a 2cm tumor was in his CBD), although the CT from Jan.9 shows an enlarged lymph node. Bloodwork is mostly good, with elevated ALK PHO and low RBC and Hemo. Recall that he had his common bile duct, gallbladder, left liver lobe and 3 slices of his right lobe removed on Dec.1. He is stage 3B because one local lymph node was positive, along with the tumor in the CBD, and cancer in the gallbladder with positive margins in the liver and down by the pancreas.

The plan is to start gemzar/cisplatin on Feb.2. His biliary drain is scheduled for removal on Jan.30, which is why they are waiting to start chemo. I understand that they can start chemo while the biliary drain is in place, but they want to give him more time to recover from surgery. He will have 2 rounds of chemo before another scan and probably IMRT (radiation) followed by more rounds of chemo. We just got approval to have his tumor tested by FoundationOne, so that might change the plan if any mutations are identified. We love his surgeon, Dr. Juan Mejia, and oncologist, Dr. Mei Dong, here in Spokane, WA, but we are getting a second opinion from Dr. Philip Gold with Swedish Cancer Clinic in Seattle. Dr. Dong has already collaborated with Dr. Andrew Coveler (UWMC, Seattle Cancer Care Alliance) on the treatment plan, so we wanted to get an outside opinion.

Our insurance denied our request to seek a second opinion at MD Anderson, but we decided that was not really a good option for us at this point since we are not interested in actually receiving any treatment in Houston as it is so far away. We can request this again if he fails this first-line treatment, but Seattle is so much closer a more realistic option.

Patrick is doing remarkably well, especially considering he was in the hospital for a month. He was in great health to start, as he is a bike commuter and clean eater. He is a professor and has been able to arrange his schedule to be very flexible this spring. We just do not know how he will react to chemo or radiation, so the flexibility is really nice. Although we have read lots of info, we were still disappointed when Dr. Dong told us that while gemzar/cisplatin is the drug combo of choice for CC, only 30-40% of patients have a response. When Dr. Mejia was not able to get clear margins on Dec.1, he told us that the average life span for cc patients with those conditions was 30 months. Those statistics seem so horrible, but they match the horrible statistics I have read about. Are there any more recent ones?

Patrick will also have genetic testing done. He was previously tested for Lynch Syndrome since he had multiple non-cancerous colon polyps at age 40. That was negative. His mother first had breast cancer at age 39. We have two children; a boy age 13 and a girl age 10.

Thank you to everyone for sharing your stories and all the information. This site has been so helpful to us!
Victoria

My husband did not lose his appetite or any weight after the stents were installed. He actually felt much better after the pancreatitis was taken care of, which took awhile. He was getting quite jaundiced before the stents were placed and something needed to be done.