April 17, 2019 at 8:10 am #98463Carrot2018Participant
Hi Victoria – To help with Patrick’s discomfort in the belly, you might want to look into acupuncture, an integrative nature approach to help body/spirit while going through chemo. I have seen many cancer patients benefiting from and getting relief a lot in terms of pain management.
I am also exploring clinical trial these days. Have you checked out the Keytruda/immunotherapy lately? With limited clinic trial options, immunotherapy might be something to consider. There is one recruiting now at UCSF: https://clinicaltrials.ucsf.edu/trial/NCT02628067
Hope it helps.
LiliApril 15, 2019 at 12:30 pm #98449
Hi Victoria- So glad to get this update from you! I am way overdue to do an update for us and I’m hoping I can sometime next week but in the meantime I wanted to embroider on to what Mary was saying about Keytruda. We met with Dr. Kelley (@ UCSF) recently and she said that there is a good medical argument for trying patients with CC on Keytruda even if they don’t have the genetic markers. She said there is a small percentage of patients who get a good response and there is no way of knowing who those patients will be ahead of giving the drug. She was not suggesting this as a first or second line but more if the options are starting to narrow. She further added that since Keytruda isn’t metabolized in the liver it isn’t crucial for the bilirubin to be in that magical below 2 range in order to receive the drug. I hope this is helpful to you (and anyone else who reads the discussion board). I continue to keep you and your family in my thoughts, all the best, TillyApril 14, 2019 at 2:07 pm #98448
It is good to hear from you and thank you for the update on Patrick. I wish the news were better, however, and as you describe, even as there is an urgent need for treatment decisions to be taken asap, they will be complex and probably involve consultations with multiple medical providers.
I thought about what questions I might ask.
As you noted, better pain management would be a primary concern. Is Patrick being seen by anyone with expertise in addressing pain and quality of life? There are different remedies for pain and if the current approach is not working well, it should be revisited.
Clinical trials would be an option, but it may take research on your part to find candidates that do not involve too much travel. It may be worth, if you have not already done so, a few hours spent on clinical trials.org looking at trial options and calling the principal investigators to doublecheck about Patrick’s bilirubin level and other eligibility concerns. Another key variable to ask about is the washout period which may be a month or so. If Patrick’s cancer seems to be moving aggressively, this may be something to ask doctors about, namely if waiting for a trial poses a risk as compared to moving quickly to a different chemo.
Some patients have reported seeking compassionate or off-label use for treatments, e.g., used in other cancers, that medical professionals feel might be beneficial. There have been a few put on keytruda despite not having the genomic target for it, for example. (I do not know what the results have been in such cases.). So another question to add to the list might be whether there is a treatment of sufficient potential benefit to Patrick that might be available via off-label or compassionate means and equally importantly, if so, will the doctor be willing to devote the time and energy to do battle with insurers or FDA as needed? I would add that approval timelines should be discussed if there is a plan to go this route, because if they are too lengthy, this sort of option may not be the best idea.
As with pain management, there is a lot of experience among medical providers treating ascites although it is certainly wearying for patients the more side effects they must seek treatment for. A question you might consider asking is what does the emergence of ascites mean, if anything, about the course of Patrick’s cancer. It may be of minor consequence, or not, but since this is worrying you, try and get Patrick’s doctor to give more of an explanation of why this is happening.
I think most of the questions that occurred to me are already on your list, and I hope Patrick’s doctors can provide some clarity about potential next steps. Please take care of yourself, and know all of our fingers are tightly crossed that the new treatment plan comes together quickly and brings relief.
Regards, MaryApril 14, 2019 at 1:33 am #98444
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.January 29, 2019 at 7:32 am #98059
Thank you for letting us know how Patrick is faring. I hope the fevers and infections can be brought under better control. Is there a plan to introduce stenting?
It is good news that you and your doctors have so carefully identified two clinical trials as potential next steps.
We are all hopeful that the new year will bring breakthroughs for our cancer. This week at the Cholangiocarcinoma Foundation annual conference (which can be followed on the Foundation website), there will be reporting of where medical science and research are finding new pathways to treatment and someday hopefully a cure.
Regards, MaryJanuary 28, 2019 at 1:57 am #98057
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.December 15, 2018 at 6:22 am #97896
You and your husband have hit another treatment turning point. It is good to hear Patrick is feeling well and you have identified some options.
FOLFOX is a typical second line chemo for cholangiocarcinoma. As with any chemo it has some side effects and is effective for some but not all patients. One question to consider asking Patrick’s oncologists is whether all chemo options should be exhausted before moving into a trial. I think the answer to this might be different for each patient based on their profiles.
My instinct regarding trials would be the same as yours, namely to do research myself using clinicaltrials.gov, the Cholangiocarcinoma Foundation website and any other info available. One big decision is if you want to travel and how far. The trial information will have a point of contact – by calling this person, it may be possible to see if Patrick is a good candidate, what is required to enroll, is there a chemo wash-out period and any other questions. Then, as you are planning, when you see the oncologist, you can have in hand some trial ideas to discuss in addition to what the oncologist comes up with.
You mentioned insurance questions regarding a PARP inhibitor drug. If insurance won’t pay, another avenue would be to check if the pharma company has a low-cost access program for qualifying patients. This info would be on the manufacturer website.
I hope Patrick can get in quickly with the oncologist and that you and he can head into the holidays with a good treatment plan in hand.
Regards, MaryDecember 15, 2018 at 1:08 am #97895
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 😉November 13, 2018 at 4:00 pm #97781
Dear Victoria- Thank you for this update. It’s great that his new oncologist wanted to zero in on the cause of the fevers. Hopefully you’ll have even more clarity in the days to come. Very good news on Patrick’s scans as well. I appreciate your attitude of treating it like a chronic condition and keeping life as normal as possible. Peter is also continuing to work full-time (he is a professor too) and it gives him so much affirmation and pleasure. Wishing you all the best, TillyNovember 13, 2018 at 11:12 am #97778
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.August 15, 2018 at 7:41 am #97368lilitmParticipant
Dear Victoria, so happy to hear the good news of Patrick’s stable scan! The major shrinkage of his lymph node and his drop in CA 19-9 are so great.
I’m sorry he gets infections every 10 days or so – was also wondering about whether he has stents? One interesting thing is that I have read antibiotics might help gemzar work (because the cancer might have specific bacteria that makes gemcitabine less effective) – perhaps that is helping? https://www.newscientist.com/article/2147438-tumour-bacteria-sabotage-chemotherapy-by-destroying-cancer-drugs/
The hair loss is hard. After gem/cis (where my dad just had some thinning), he did folfiri (where he lost a lot more) – but now, after 3 months off chemo and on an immunotherapy trial, so much of it has grown back!
Sending lots of love and wishesAugust 14, 2018 at 10:57 am #97366
Victoria- Thank you for the update and sharing the good news that things are stable (deep exhale!). I will be keeping a good thought for all of you. Blessings, TillyAugust 14, 2018 at 10:21 am #97365positivityParticipant
Yes, stable in good. It is always about managing this condition continuously and always ready for symptom management. You mentioned the antibiotics due to the bile not flowing. Does he have stents? If so, how often does the doctor change it?August 14, 2018 at 10:02 am #97364gavinModerator
Thanks for sharing this news with us all about your husband and I agree with Mary that stable is good! My fingers are crossed for the next lot of scans and hope that the good news will continue for you both. It is also good to hear as well that the side effects of the gem/cis are tolerable for your husband with the meds for them etc and hopefully that will continue as well. Fingers are crossed for you both and please if you can let us know how things go.
My best to you both,
GavinAugust 13, 2018 at 9:46 pm #97358
Thank you for sharing this positive news. Stable is good. I hope the periodic fevers and infections calm down.
Gem-cis chemo is the workhorse of our cancer. Like a workhorse, it is neither pretty nor exciting as treatments go, but for many patients, it does the job and is tolerable. I am glad it is producing a stable result for Patrick.
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