spokanemom
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Time for another update. Patrick had an external biliary drain placed on February 28, primarily to improve his liver functions. It is working well and his ALT, AST, and ALK PHO have all improved dramatically. His Bilirubin has gotten better, but is still in the 2.6-3.2 range. He pulled the drain a little, had to get it repositioned and developed an infection that caused him a 1 night hospital stay, but it has gone smoothly since then. He developed another clot in his leg, so he is on Lovenox injections twice a day, which may be pushing him over the edge.
His CA19-9 has continued to climb. He had scans on April 11 that show the tumors in his liver have grown, but no new tumors were found. The oncologist said FOLFOX is not working. FOLFORI is the next line in chemo, but both his regular oncologist and Dr. Gordan from UCSF recommend looking for a clinical trial rather than FOLFORI. Dr. Gordan suggested going with a trial that targets one of the genomic alterations identified by the Foundation One testing: ARID1A. We have just started looking into this and hope to develop a plan next week.
Patrick has not been feeling very well. His belly is sore all the time now (about a 3 on the 0-10 scale). The pain seemed to increase starting with the drain placement, and the twice daily injections are not helping. The scans did show fluid in the abdomen, and we will talk with the oncologist about how best to address that on Tuesday. I am scared. I have heard that ascites are not a good sign. Every clinical trial I have read about requires that his Bilirubin be below 2, which hasn’t happened in such a long time. There are so many unknowns right now, but the focus has to be on treating his constant pain, and I am worried that he will not be eligible for a trial. He doesn’t want to move or live somewhere else temporarily, but is willing to travel to receive treatments and then travel home. We live in Spokane, WA, so Seattle is the closest major medical center. The docs there previously said they did not have any trials for him, but we are checking if that is the case. UCSF does have the trial Dr. Gordan recommended, but maybe there is a better trial somewhere else. I am trusting the docs to help us find the best fit.
I’ll post more as we learn more and determine which path is best for him right now.
I thought I would post an update on Patrick. He did start FOLFOX on Dec.26th (with a 90% dose) and we traveled to UCSF on Jan.3 to meet with Dr. Gordan. Patrick was extremely ill on Dec.31 & Jan.1, but his doctor worked hard to get him healthy enough to travel on the 3rd (IV antibiotics and fluids). Dr. Gordan was very informative and we both felt the trip was worth it. He told us that PARP inhibitors should not be given with chemo, due to toxicity, so we had started on the right path with FOLFOX. He noted that he could ask Foundation One for a little bit more info that would help us determine whether a PARP inhibitor is likely to be effective, given that Patrick failed on a platinum-based chemo (cisplatin). He got that information within 10 days and informed us the PARP inhibitor would not be the next best step if FOLFOX fails. Anticipating the information from Foundation One, he told us that he would suggest a trial that targets one of the other mutations identified by Foundation One, and he specifically had 2 trials in mind. All good info to have.
Patrick’s blood work was not good enough to have chemo on Jan. 8th, so he had an 80% dose on Jan.15 and is now scheduled to get chemo every 3 weeks. He also got Neulasta in hopes of increasing his white blood cells. He was on oral antibiotics for 21 days because of the infection that started Dec.31. He finished the drugs on Jan.24 and his bloodwork from last week does not look great. He bilirubin is again on the rise, as are all his liver functions. They wanted to wait until he had 4 rounds of FOLFOX before having another scan, but they might rethink that if his CA 19-9 continues to rise.
He has pretty severe cold sensitivity for about 5-6 days after getting Oxaliplatin, and it is also pressure sensitivity. He has pretty bad night sweats and difficulty staying warm starting about 6pm every night. He has chosen to reduce his teaching load at work this semester, which was a really sad decision for him because he loves his job.
Getting his bilirubin under control is a top priority, and that may mean that he needs a stent(s). He hasn’t had any since his resection in December 2016. Currently, his bilirubin level would prevent him from participating in most trials anyway, so that needs to be addressed. It seems like Patrick is fine as long as he remains on antibiotics, but the minute he goes off of them, his infection (sepsis) starts to come back. They think that the bile is backing up, which causes the infection.
We are trying to remain positive, and we know that even being alive 26 months after diagnosis is a blessing. We continue to hold on to the words of a surgeon that we met at the University of Washington. He said that the goal was to keep Patrick alive long enough to benefit from the next big thing, because it was just around the corner.
After being released from the hospital, Patrick completed a 3 weeks cycle of heavy antibiotics. They were really hoping that the infection was causing his CA 19-9 to rise. Two days after completing the cycle, his tumors markers were shown to have doubled in the previous 28 days. He had a CT scan on the 11th, which showed that all of his tumors had grown since the CT and MRI he had 5 weeks prior. We got the results yesterday and his chemo of gemzar/cisplatin was not administered because it is obviously no longer working. His oncologist is talking with the doctors in Seattle that we have already seen (in June, after his recurrence in May) to confirm that they have no clinical trials for him over there and that he is not a candidate for Y-90 (due to his extensive resection in Dec.2016). While she is doing that, we are trying to get in to see Dr. Kelley at UCSF. I already had Patrick set up with an ID there, but they are reviewing the most recent notes and scans before granting him an appointment. They previously said she was booked 2-3 weeks out and we are hoping it is not longer with the holiday season.
Plan B is to start FOLFOX on Dec.26. I am worried about doing that though, because it would affect his ability to start a trial. He looks great and continues to feel good. His energy is down, we think because his anemia got worse with each gem/cis dose, which he has been getting every other week since May. We live in Spokane, WA, so Seattle is much closer than San Francisco. However, when we went to Seattle Cancer Care Alliance and UWMC in June/July, they told us that Patrick did not qualify for the clinical trials they had available at the time. Maybe that has changed.
I am floundering a bit right now. I am wondering if I should place all my trust in his oncologist to find a trial, or if I should look through the trials and ask her questions about specific ones I think he might qualify for. She wants him in a trial for a PARP inhibitor because he has a BRCA1 mutation. She assumes our insurance would not pay to add the PARP inhibitor to the FOLFOX regimen, but she put the request in anyway. I am wondering if I should ask to postpone any new chemo until we determine whether he qualifies for a trial, but I am worried about how fast the tumors will grow without having any chemo since Nov.29. When he was not on chemo previously, his CT in April showed no tumors and the scan 4 weeks later showed 3 new tumors, the largest of which was 5cm.
I think I will start a list of potential trials and drop them off for her to review before we meet on the 26th. Just what she wants to do over Christmas I am sure 😉
Time for another update. I was very nervous for this round of scans because Patrick’s CA 19-9 jumped up between September and October. The CT showed no progression, which was good, but the CA 19-9 jumped up again when retested 2 weeks later so the doc wanted an MRI. It worked out nicely because Patrick had to spend 2 nights in the hospital with sepsis so he got his MRI there. The MRI confirmed no progression! They are thinking that the blood infection was causing the tumor markers to increase, so they will retest when he is finished with his 3 week course of antibiotics.
He had been getting fevers every 10 days starting in April, but those tapered off as he received more chemo treatments. The assumption was that the bile was getting backed up from the tumors and then causing infection. He had not had a fever for 7 weeks or so, before getting 2 in the few weeks before he was admitted. His previous oncologist just let him self-administer cipro when he developed a fever, since he got them about every 10 days and the fever responded well to cipro. He new oncologist insisted that he come in for blood work any time he got a fever, which is how they discovered the sepsis. The sepsis could still be caused by backed up bile, but it could also be caused by his port. They are going to wait and see how things go once he has finished this extended course of antibiotics.
Life is good. We are treating this like a chronic condition and Patrick is tolerating chemo well. He is working fulltime (as a professor). This was his first hospitalization since March, and he felt fine the entire time because he started taking cipro 1.5 days before they confirmed sepsis and admitted him to the hospital. Here’s how it went:
Friday – starts to get a fever/chills. Goes in for blood draw before starting cipro.
Saturday – feels much better 24 hours after starting cipro
Sunday – gets a call that the blood draw from Friday is growing something (sepsis) and he has to go into the hospital for IV antibiotics while they determine what exactly is growing. More blood is drawn.
Tuesday – is discharged on 3 weeks of higher dosed cipro and told that while the blood from Friday is still growing something, the blood from Sunday was NEGATIVE! I guess the cipro he started on Friday worked. It was still good to determine that a blood infection was occurring though, because it makes them suspicious of his port. We’ll see what happens next. I hope it is the port and not from tumors.
Hi Elena,
Welcome. My husband was also 42 when he was diagnosed 2 years ago. He had one 5cm tumor outside his gallbladder. Sounds like he had the same surgery as your brother (along with his gallbladder and common bile duct removed), with positive margins and 1 positive local lymph node, but he was diagnosed at stage IIIB. He did gem/cis for 7 rounds (2 weeks on/1 week off) followed my 5 weeks of IMRT radiation with 5FU chemo. Was NED for 8 months before a recurrence with 3 tumors in his liver. He has been doing “maintenance” gem/cis every other week since May and has had no growth. Life is good and we are treating this like a chronic condition. He will have chemo as long as he can tolerate it and it is effective, then we will try something else. We have had consults with 2 other oncologists and a different surgeon, so we are familiar with his options. That was reassuring to us both. He has been working full time, but has little blips every once is a while when he has to cancel class (he is a professor). My husband has told me that he really appreciated the special family times I created while he was in treatment the first go around. We took a couple of very small, local trips with the kids to an amusement park/hotel. We typically do a lot of traveling, so this was part of keeping life “normal”. We have lunch dates on his chemo days, which is also a fun routine to get into. I bring him lunch and sometimes his brother joins us as well.
We are both huge planners, so the unknown aspect of having cancer has been difficult, especially for me. It really helped us both to meet with a financial planner and talk through various scenarios regarding social security, life insurance, health insurance, etc. We also appreciated the second/third opinions we received and the long term medical plan developed by his oncologist after his recurrence (if this fails, then try this, then this, then this, etc).
Looking at this as a chronic condition (since his recurrence) has also helped us as a family. Many people have health issues that they deal with and we are doing all that we can to treat this disease, while not putting life on pause. This is our new normal and life is good.
You are providing such a great service to your brother. I really appreciated being able to offload medical research to other family members so that I could just focus on my husband, and have my husband focus on healing.
Best Wishes,
Victoria
Dear Ken,
Thank you so much for sharing!! I love hearing from long term survivors. My husband was diagnosed 2 years ago and to hear you have been 2.5 years NED after multiple recurrences gives me such hope. I wish you well, Victoria
Welcome! I am so glad to hear that you are doing OK physically. My children were 10 & 13 when my husband was diagnosed 2 years ago. I don’t know how old your children are, but I found that having children at home really helped pull us out of the “cancer world”. They are so busy and we tried to keep life as normal as possible for them. We are treating this like a chronic condition that is just a part of our life. Both kids have benefited from counseling, one individually and one in a group run by our cancer center. I love the group at the cancer center since the adults meet while the kids meet too. It is a mixture of patients and caregivers. I hope you are able to lean on your friends and family for support.
Best wishes,
Victoria
Dear Tilly,
I have been thinking of you and Peter and I hope he is tolerating his treatments well.
Victoria
I believe my husband has also had enlarged lymph nodes that were concerning during chemo/radiation, but upon PET scans were shown not to be cancerous.
I don’t know where in Idaho you live, but we live in Spokane, WA and you can get info on which doctors we saw/see from my Intro post at https://cholangiocarcinoma.org/db/topic/my-42-year-old-husband/
His amazing surgeon was Dr. Juan Mejia at Sacred Heart Medical center in Spokane, WA. We have also seen docs at Seattle Cancer Care Alliance, Swedish Medical Center and UW Medical Center (all in Seattle). I have 2 family members who loved their treatment at the Mountain States Tumor Institute in Boise (both for breast cancer though).
I hope you are able to use the amazing info you can find on this site! Feel free to message me with any questions,
Victoria
Thank you so much for starting this conversation and sharing tips! My husband is experiencing much more hair thinning since restarting gemzar/cisplatin 3 months ago. He did 5 months of gem/cis in 2017 and only experienced a tiny bit of thinning. This time, his hair is thinning not just on his head, but on his arms and legs as well. There are no plans to stop chemo, so we anticipate the thinning will just continue until his hair is gone.
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.
