My 42 year-old husband

Good news!  After 5 infusions of gem/cis, Patrick’s scan show the disease is “stable”.  The 3 tumors in his liver have not shrunk, but they have not grown either.  The enlarged lymph node has shrunk by 50% and his CA 19-9 has decreased by more than 50% since April.  We were all happy with the news!  He will continue to receive gemzar/cisplatin every other week until his next scans in 2-3 months.  He is able to tolerate the chemo side effects pretty well, although he continues to need antibiotics every 10 days or so for infections caused by his bile not flowing.  He takes a 3 day course of antibiotics and his fever goes away.  One new side effect: He previously had a tiny bit of hair thinning with his first chemo regimen in 2017, but he has experienced much more hair loss since restarting in May.  Oh well.

Patrick is still on Gem/Cis and has not gotten a scan in 2 months.  After his first dose he needed 3 weeks to get his blood work back up to par, so they changed his schedule from 2 weeks on/1 week off to every other week.  That means it has taken longer to get 6 infusions in.  His 5th infusion is scheduled for this Friday.  The chemo has been hitting him a lot harder this time around.  He previously had never had chemo delayed.  He also continues to get infections (indicated by fevers), which can be a bad sign that the tumors are not shrinking enough to let the bile flow.  He has antibiotics that he starts every time he gets a fever, and he feels better in about 36 hours.  It is unfortunate that he can go from feeling good to being so sick he needs to be in bed within 1 hour.  He hasn’t gone longer than 10 days off the antibiotic.  Ugh!

The Foundation One report identified 4 genomic alterations and 2 additional findings.  None of them had any FDA-approved therapies for clinical trials.  The doctors here, at Seattle Cancer Care Alliance, and UW Medical Center all concur that PARP inhibitors would be the next step if this chemo is not working, since Patrick has a BRCA variant.  Everyone also concurs that further surgery and radiation therapies are not an option now or in the future (he already had a big resection on 12/1/16).

His oncologist is moving from the area at the end of the month.  We might choose to switch to a breast cancer oncologist since they would have more experience with PARP inhibitors.

Our plan is to wait for the scan results.  If it shows the chemo is not working, we plan to go to MD Anderson in Houston or UCSF.  It would take us 2.5 hours to get to UCSF (with a direct flight) and 6 hours to get to Houston (no direct flights) from Spokane.  Both places have potential clinical trials with PARP inhibitors, but UCSF has 2 docs on the Foundation’s Medical Advisory Board and MDA only has 1 doc.  Any input on that???  I’ll post again when we get the scan results.

It’s back.  An MRI from late March showed 2 slightly enlarged lymph nodes that the radiologist labeled stable, but which concerned Patrick’s radiation oncologist enough to order a PET CT.  The PET CT was clear everywhere except inside the liver, and another MRI less than 6 weeks after the first showed “The mass encases the intrahepatic portal veins and bile ducts…” with 3 listed lesions of 5cm, 3.1cm and 2.4 cm. A needle biopsy was conducted on 5/9 to confirm cancer and to get samples for Foundation One. Results should be back by the end of the month, but he started back on gemzar/cisplatin today. We are going to Seattle Cancer Care Alliance for a second opinion on Wednesday, but since he started chemo today MD Anderson said they will not see him until he needs his next set of scans at the end of July. I am frustrated with the wait since he feels so good right now and it would be easier to travel from Spokane to Houston when he feels good, not worn down by the chemo!

He was originally diagnosed in Nov. 2016. He had his common bile duct, gallbladder and 2/3 of his liver removed on 12/1/16, but without getting clear margins. Six rounds of gemzar/cisplatin followed by 5 weeks of radiation with 5FU chemo that ended in August 2017.

His oncologist is moving in July, which worries us.  We were devastated when we got the 2nd MRI results, but we feel better now.  I love reading the stories of people who have had recurrences and are still here to tell the tale!  Thank you everyone for sharing.

More clear scans to report!  Both his MRI and chest CT were clear and they have scheduled him to have his port removed.  He has had it in for almost a year and will not be sad to see it go.  He is doing so well, although he physically is not back to where he was before surgery and treatment.  Dec. 1 was the 1-year anniversary of his surgery, but Dec.30 was the 1-year anniversary of his hospital discharge (multiple infections kept him in the hospital for 30 days).  He finished chemo at the end of June and finished radiation at the end of August.  Neuropathy in his feet continues to be his biggest irritant, although he still has a bit of a rash on his hands.

He has just started weaning off of Reglan (metoclopramide) (on it since the surgery), and will be weaned off Protonix (pantoprazole) after that.  He will remain on the vitamin B complex and baby aspirin (he developed blood clots in the hospital and in 2014).

We are really enjoying this sense of “normal” that we have in our lives right now.  He recently signed up to participate in a Livestrong program at our YMCA.  He will be scheduled to have a PET CT in 3 months.