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  • #99589
    Pspino418
    Participant

    The 2nd line treatment they may use is 5fu / Folfox. Anyone have any feedback on this?

    Also, we now know that there are approx 7 lesions on liver with largest being 14mm and smaller approx 5mm. He also has a small amount of ascites. They said to try and grin and bear the uncomfortable feeling as it isn’t enough to make them want to drain it, which sounds awfully painful. If anyone has any ideas on relieving the full and bloated feeling, we would appreciate it.

     

    Thanks everyone.

    Patti

    #99513
    bglass
    Moderator

    Hi Shshaw,

    I also looked around and did not find much additional information for you, but will keep looking.  I am assuming by “pump” you mean the HAI pump a few of the major cancer centers offer, since you had mentioned this in an earlier post.  This is not a very common treatment.  The published studies I have seen for the hepatic arterial infusion (HAI) pump have shown promising results, and because the chemo is delivered directly to the liver, there can be fewer side effects.  5FU (fluorouracil) is a chemo proven to be effective for cholangiocarcinoma, and appears to be one of the chemos used with the HAI pump.

    Some patients have received 5FU in combo with other chemos where the 5FU part is delivered at home through a small infusion device or pump that the patient carries in a pack. This is a different means of delivery than the HAI pump which is surgically implanted.   Some acronyms for 5FU chemo combos used for cholangiocarcinoma with this type of pump are FOLFIRI and FOLFOX.   I believe we have seen reports by patients and caregivers on the boards for these treatment, which could be found using our search engine.

    I hope this is helpful and that your treatment brings good results for you.

    Regards, Mary

    #99511
    gavin
    Moderator

    Hi there,

    I did a search on the boards for you using the search forum function and it threw up these discussions here –

    https://cholangiocarcinoma.org/db/search/5Fu+monotherapy/

    Not a lot to go on there I know. So I did another one for you on just 5FU and it came up with this, much more here.

    https://cholangiocarcinoma.org/db/search/5fu/

    I hope that some of that will be of use and interest to you. And I will be keeping my fingers crossed for you as well with regards to the treatment and hope that it works very well indeed.

    My best wishes to you,

    Gavin

    Shshaw
    Participant

    Had 6 cycles of Gem/Cis for intrahepatic non-resectable ICC. A Scan shows main tumor has shrunk, however several small tumors (mets) have grown. Anyone else had results like this? Oncologists now has me on 5Fu monotherapy using pump. Has anyone had this treatment before and what were results?

    #98805

    In reply to: Folfirin

    bglass
    Moderator

    Hi Brigitte,

    It is nice to hear from you.  Has your doctor advised starting Folfiri?

    If you search the chemo name on the discussion board search engine, you can find some patient stories.  Folfiri (for any readers not familiar) is a chemo cocktail that involves folinic acid, fluorouracil and irinotecan.  Folinic acid is a vitamin added to some chemo regimens to reduce side effects and it is thought to boost chemo effectiveness.  Fluorouracil is also called 5FU and is a chemo, as is the irinotecan.

    Folfiri is a second line chemo regimen sometimes recommended for cholangiocarcinoma patients for whom the first round of chemo (usually gem-cis) has lost effectiveness.   It usually involves a combination of infusion at the oncology center plus a pump that comes home with the patient.  The pump continues administering the 5FU over about two days.  The pump is small and is carried in a pack that looks like a shoulder handbag, so it does not unduly interfere with daily activities.  From what I have read in patient and caregiver reports, experiences with Folfiri vary a lot, with some patients having light side effects and others finding Folfiri to be more harsh.  For many patients, Folfiri can be effective at controlling our cancer.

    Hopefully if you pursue Folfiri treatment, it will do its job for you and keep the cancer well controlled.  Please let us know how you are doing.

    Take care, regards, Mary

    #98748
    bglass
    Moderator

    Hi Jj950,

    The gemcitabine with cisplatin chemotherapy combination is considered standard of care as a first line treatment for cholangiocarcinoma when surgery is not possible (“nonresectable”).   First line means it will be the first chemo tried.  The results of a past clinical trial (“ABC-01”) undertaken in the U.K.  showed that the two chemos taken together are more effective than gemcitabine alone, and the results of this trial contributed to establishing this chemo regimen as a go-to approach for nonresectable cholangiocarcinoma.

    Standard of care does not mean that everyone gets the same cookie-cutter treatment.  Oncologists look at the specifics of each patient and determine an appropriate treatment regimen, which may or may not be gem-cis.  Factors that may be considered include the patient’s health status, the location and aggressiveness of the cancer, and the oncologist’s own clinical judgment of what treatment is most appropriate and likely to be effective.

    Chemos tend to lose effectiveness over time–sometimes because the cancer mutates and becomes resistant.  When this happens, a second-line chemo treatment may be selected.  Folfirinox, which I will describe further below, is an example of a chemo regimen that may be used as a second-line treatment for cholangiocarcinoma.   There is not yet a second-line chemo considered standard of care for cholangiocarcinoma, to my knowledge, so there are several different ones reported by patients and caregivers on this board.  Some have similar names – folfirinox is different from folfox which is different from folfiri.  The selection criteria for a second-line treatment would be the same as mentioned in the paragraph above.

    Folfirinox is a combo of four drugs: folinic acid, fluorouracil (or 5FU), irinotecan and oxaliplatin.  The first drug is a vitamin which protects against some possible adverse side effects of the chemo, and the last three are the chemos.  Because this regimen involves three chemo drugs, it is described by some (not all) patients as a tougher one to tolerate; however, it has shown effectiveness in slowing down the cancer.  If you search folfirinox using the discussion board search engine, you will find stories on patients who had this treatment.

    Patients tend to hone in on their CA 19-9 results as strong signals of how they are doing.  My CA 19-9 gets measured every two months and waiting for the results always causes anxiety and worry.  That said – interpreting CA 19-9 movements during treatment is best left to doctors.  CA 19-9 does not always track disease progression and the treatments themselves for some patients will induce temporary increases in this tumor marker.  This number is just one bit of information that is factored into the overall picture, which also includes imaging, patient symptoms, and other blood tests such as liver enzymes.  I am repeating what my doctors have said about not paying so much attention to CA 19-9, and it is a reminder to me to try and listen to that good advice myself.

    I hope the folfirinox is effective in bringing your family member’s cancer under control without too many side effects.

    Regards, Mary

     

    #98298
    bglass
    Moderator

    Hi W,

    Welcome to our community.  I hope you have found all of the resources for newly diagnosed patients on the Cholangiocarcinoma Foundation website.

    I am sorry to learn of your father’s diagnosis.  It sounds like the current chemo regimen has shown some success although the new nodules in the lungs are concerning.  As Hannah notes, some of our patients with bone metastases have been offered radiation therapy, which can reduce pain and/or keep the met from growing.

    Gemcitabine-cisplatin is the most typical first-line chemo.  Judging from what patients report on this board, xeloda as a second line option seems to be used when the patient has a tough time tolerating chemo, e.g., a very elderly patient.  It has the advantage of being in pill form.  Other second (or third) line chemos reported here for cholangiocarcinoma include the combos Folfiri and Folfox, which combine 5FU (5-fluorouracil, same chemo family as xeloda, but is infused rather than in pill form) and leucovorin with either irinotecan or oxaliplatin.  Leucovorin is also called folinic acid.  These chemo combos have more side effects than xeloda alone, but many patients find them tolerable.

    CA19-9 is looked at to track the course of the cancer, but it is not always reliable.  It seems good news that your father’s marker has come down, but scans will provide more precise information.

    Please let us know about your father’s results from his treatments.  I hope he is feeling well and has a good quality of life despite the cancer treatment.

    Regards, Mary

    #97879
    bglass
    Moderator

    Hi Kasia,

    Thank you so much for reporting this important information.

    I looked into this, and saw a lot of information on the web about DPD deficiency.  Thankfully, only a very small proportion of patients have this genetic defect, but for those who do, capecitabine or fluorouracil (5FU) may cause more severe, or even life-threatening side effects.

    There is apparently a way to test for DPD deficiency prior to starting chemo, but it is complicated because there are multiple forms of the mutation that would have to be looked for.  Because the number of potentially-affected patients is small and because other factors can also cause severe side effects, it appears that doctors more often rely on giving patients very explicit info on side effects to watch for and the urgency of immediately contacting the doctor.  I read that the quicker the adverse side effects are reported, the easier they are to reverse, e.g., by the antidote drug you mentioned.

    When I was started on capecitabine in 2016, I recall being given the talk on the need to immediately report fever and other potential side effects, but no mention was made about testing for a DPD deficiency.  It seems testing is not that common, but certainly something that patients should ask about if concerned.

    Regards, Mary

     

    #97853
    bglass
    Moderator

    Hi Daisy,

    I think the doctors may be recommending Folfiri.  Folfiri is a chemo combination of fluorouracil (also called 5FU) with irinotecan, plus folinic acid (leucovorin) which is a vitamin that helps the 5FU bind better to cancer cells.  This combo is often used for colorectal cancers.  It has shown effectiveness with cholangiocarcinoma and is sometimes used as a second-line treatment.  The 5FU can be administered through a take-home pump.

    If you search Folfiri on our board you will pick up a lot of posts about Folfirinox which is a different chemo combo, so it might in this case be as helpful to search the internet for information on Folfiri.

    Do you and your mother see pursuing another clinical trial as an option?  I think at the moment clinical trials offer more opportunities for cholangiocarcinoma patients to try immunotherapies, including in combination with standard chemos.

    Regards, Mary

    #97777
    spokanemom
    Participant

    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

    #97153
    lilitm
    Participant

    Does anyone have any thoughts for 3rd line treatment?

    My dad was on Gem/Cis for 11 months, then Folfiri for 2.5 months until a scan showed growth and he needed an ERCP to place plastic bile duct stents (they said in 12 weeks they’d do another ERCP and could replace them with metal stents.)

    It’s been 9 days since the ERCP and he’s mostly recovered, although he is so fatigued – even though his last chemo was May 8 – not sure whether it’s from all the chemo he’s done, from ERCP recovery, or from the cancer itself? Just a month ago he did a 15 mile bike ride, and right now all he feels up for is a 10 min walk or so.

    We have an appointment at MSK June 18 (tomorrow!) to find out what they think we should do next. I’m so scared. I don’t even know how to prepare for this appointment or what to ask. I am worried they will just say to do a 3rd harsh chemo regimen that has no data of benefit and will just weaken him further. But what if it’s better than doing nothing? What chemos are left – is it ever good to use oxaliplatin after progressing on cisplatin? Or capecitabine after progressing on 5fu? Is there any point in using abraxane? What about avastin?

    I have been making note of every trial on clinicaltrials.gov that he might be eligible for, but none of them sound promising without the mutations/immunotherapy indicators? (I was looking into Dr. Rosenberg’s TIL trial at the NIH but the trial contact said a biliary stent makes patients ineligible? Has anyone else heard of this or gotten a stent removed to participate?)

    How do you find out if a trial is promising (when there are no obvious signs like targetable mutations or MSI/TMB)?
    Is there a site or something to find out trial results or updates that aren’t posted on clinicaltrials.gov? I can’t find data on most of the biliary trials…

    Should I trust the MSK oncologist to tell us which trial looks best from a list I’ll bring, or would they only recommend the trials at their own institution?

    Thank you so much, with my warmest wishes to all
    Lili

     

    #97121
    Sarwithketchup
    Participant

    My dad has has stage 4 CC with mets to surrounding and hilar lymph nodes and to peritoneum.  He has undergone an ERCP w/ biliary stenting about 3 weeks ago which helped temporarily  and has gone through 2 rounds of FULFOX (Cisplatin and 5FU).  He had another ERCP today and was told the tumor has grown and is putting pressure on his small intestine which explains the increasing early satiety.  To add to it, the metallic taste is unrelenting, adding to his poor appetite & pickiness when it comes to food.  He was told to try and avoid acidic/spicy to avoid mucositis.  Is there anything to augment the “metal mouth”?  I’ve done a general search and “MetaQil” came up–any reviews?  Any other tips when it comes to improving taste?  I am concerned for his nutrition.  I try to make every meal count by supplementing with protein powder.  I’ve tried Boost, Ensure but it tastes “medicine-y”.  It’s extremely difficult to find something nutritious/high in protein & calories AND inoffensive to his taste buds.

    #97087
    spokanemom
    Participant

    Hello and welcome!  Your husband’s case sounds very similar to my husband’s.  The timeline is even the same except off by 1 year.  My husband was diagnosed in Nov.2016 at age 42 with a Klatskin tumor and had the same surgery you described on Dec.1, 2016.  He did not get clear margins during surgery.  Did your husband have clear margins?  He also did gem/cis followed by radiation with 5FU chemo that ended in Aug. 2017.  His recurrence was diagnosed last month and he is back on gem/cis.  The clinical trials your husband has participated in sound interesting.  We live in Spokane, WA, where there are no trials.  There are 2 in Seattle, but he does not have the right genetic mutations for those.  We’ll see how he responds to the chemo next month.  It is so hard to wait!!

    I also like reading the survivor stories here and on Facebook.  I get such good info.  I totally agree with you about how painful it is to watch someone you love go through this.  My husband has said he thinks it is harder on me than him!  We have a 15 year old son and a 12 year old daughter, and keeping up with their busy lives helps drag us back into “normal” life rather than “cancer” life.  My husband is a professor and had to take leave in Spring 2017 and again a small leave right now.  Is your husband still working?

    Again, welcome.  You are not alone.

    Victoria

    #96988

    In reply to: My 42 year-old husband

    spokanemom
    Participant

    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.

    #96761
    spokanemom
    Participant

    Hello Brent,

    I am so sorry to hear that your family is going through this.  We also have Kaiser Permanente, but we live in Spokane, WA.  I feel that they have been really great so far!  The only thing we asked for that was denied was a second opinion at MD Anderson.  When the renewal window came up, we changed plans to one that includes MD Anderson, just in case my husband has a relapse (he is NED now and was diagnosed 16 months ago at age 42).  The oncologist was surprised that KP approved testing by Foundation One (which was not successfully completed anyway).  I am sure it all varies according to the specifics of your plan though.  My husband was also hoping to be stage 1 at surgery, but was stage 3B because they did not get clear margins and 1 local lymph node was positive.  He is doing great and back to riding his bike to work a few days a week.  After surgery, my husband did 7 rounds of gemzar/cisplatin followed by 5 weeks of ration with 5FU chemo (intravenous Xeloda).  Are they planning on any gemzar/cisplatin for your wife?

    Victoria

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