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  • #99471
    vtkb
    Participant

    https://www.cancertreatmentsresearch.com/community/immunotherapy/dr-williams-clinic/   This had a patient perspective thread with a patient (meech) who had a similar cancer to cholangiocarcinoma.  Not sure if reading the thread will give you the answers you seek.

    There is a clinical trial now recruiting that wants to combine intratumoral chemo (cisplatin/vinblastine) and immunotherapy in some centers in the US- that may be an alternative to what you suggested with Dr. William’s Clinic.

    Good luck in your journey

    #99462
    Harrypenny
    Participant

    Hi Mary

    Yes, I’ve used the CCF specialist map quite a bit.   My onocologist is integrative and has had cholangio patients prior to me.
    He’s integrative so a bit different from conventional in that the immune system is protected and stimulated.  That isn’t to say that the program was too much for my body to manage.  My platelets have recovered.  It’s taken nearly 6weeks for them to get above 100 and my blood counts are still low but there is progress.   I’m anxious to get back to treatment however.

    All of the surgeons and conventional oncologists that I am consulting with actually came as recommendations from cholangio patients.
    Dr Fung and Dr Liao from Chicago University; Dr. He with John Hopkins; Dr. Jarnagan at MSKCC and Dr. Kato with Columbia in NYC.

    I have a face to face consult with Fung/Liao on 12/23 and am working to schedule with the other surgeons.   I’m not yet  convinced that I’m not a surgical candidate so we are getting as many second opinions as possible.

    If surgery isn’t yet possible, I’m pushing for alternative treatments.  Has anyone experienced or heard of the Williams Cancer Institute?
    I’m trying to find patients who have done his program.  Dr Williams is an interventional radiologist who performs intra-tumoral immunology with a 65% complete response rate.  He only performs the treatment in Mexico given one of the agents he uses isn’t FDA approved in the US.  I had a consult with him which was very knowledgeable but I’m needing additional information from a patient before I could make a decision.

     

    #99415
    bglass
    Moderator

    Hi Caroline,

    It is nice to meet you and thank you for sharing your story.

    Quite a few of our patients report platelet issues while undergoing chemo.  When the chemo is delivered in a typical schedule (e.g., a three week cycle with two chemo weeks and one recovery week), generally blood counts bounce back enough for the next cycle.  When they don’t, patients report the next cycle may be delayed or the dose reduced.

    Your case of course is different because your chemo from what I understand is being delivered in smaller doses over longer cycles.  I looked around the discussion board and found just one case from about ten years ago of another cholangiocarcinoma patient who was treated with IPT and the lower dosing. I also looked around the medical literature and did not see any studies or clinical trials for this treatment approach with our patients.

    We have seen reports of patients whose platelet issues were more severe.  One patient reported being sent for a dietary consult.  In other cases, doctors were concerned about the functioning of the patient’s spleen or whether the cancer was affecting either the spleen or bone marrow.  Not being a medical person, this information is being shared as some thoughts about questions you might ask your doctor.

    Because our cancer is rare and difficult to treat, I was wondering if your doctor is specialized in cholangiocarcinoma.  It can be hard to find a doctor who has seen more than a few cholangiocarcinoma patients.  (I used to ask my doctors how many patients like me they had treated.  One said, “um, you know your cancer is really rare.”  Another doctor told me he had just treated a few cholangiocarcinoma patients across his entire career.)  The Cholangiocarcinoma Foundation website has a provider map page that can help you identify doctors and facilities in your area (if you are in the U.S.) who see a high volume of cholangiocarcinoma patients, in case you are looking for a second opinion.  The map includes oncologists, radiologists and surgeons.

    There are options for patients who cannot tolerate chemo.  There are new treatments in testing that are targeted to specific genomic defects present in some of our patients.  You can search for clinical trials at clinicaltrials.gov or your doctor may be able to help.  These treatments may be better tolerated.  Also, radiation options are becoming more and more sophisticated.

    I was wondering if your platelets recovered once your chemo was paused.  I hope so, and that your doctors can find a new round of treatment for you.  Please stay in touch.

    Regards, Mary

     

    #99407
    Harrypenny
    Participant

    I have been reading these posts for a while and thought to introduce myself.   I’m Caroline. 58 years old and diagnosed with ICC in April 2019.   I have a large mass in the center of my liver with two lymph nodes – one in abdomen and one in my chest.  I have done 16 weeks of IPT chemo (low dose metronomic chemo) with good results after the first 4-weeks.  After that, I got thromobocytopenia and had to  start/stop/pause both the second and third 4-week programs. My Onc has never had a patient that couldn’t do low dose and their platelets not recover.  Currently, my CA19-9 is increasing.  I’m off chemo trying to find a surgeon who will say yes to surgery but have had no success with 2 so far.  Y-90 was recommended by one but the other (whom I trust more) said the benefit of Y90 would not outweigh the risk.  I’m not a surgical candidate until I can get the disease under control.  I was showing improvement in September but a break in the chemo and my numbers started to rise.  This last round not only had to be stopped, it really didn’t have any effect Gem/Cis/Abraxane.  Its really disconcerting when I’m told I need to get back into chemo and I’m not sure if my bone marrow will take it – low dose or conventional.
    Has anyone had a similar situation?  I believe the diagnosis but refuse to believe the prognosis.  There are so many cholangiocarcinoma survivors.  I simply refuse to accept that this cancer is going to win.

    #99052
    bglass
    Moderator

    Hi Joslyn,

    Welcome to our community.  Congratulations on getting through surgery with a good result.

    Restarting chemo is something to address with your doctor, who may have qualms given your prior bad reaction to the xeloda.  Adjuvant treatment after surgery is generally started as soon as the patient recovers as it is intended to mop up any stray cancer cells, especially cancer cells that may have been released via surgery or in conjunction with wound healing.  I am not a doctor, but my understanding is adjuvant treatments risk becoming less effective the longer after the date of surgery.   Typically, adjuvant treatment would start about 6-8 weeks after surgery and no later than 12 weeks after.  The BILCAP clinical trial that tested the effectiveness of post-surgery xeloda, for example, accepted patients up to twelve weeks after surgery.

    Since you did have some xeloda, hopefully there was benefit even though you stopped early.  Your doctor can advise if any additional treatment is advisable at this time.  With a clean surgery of a single tumor with no lymph node involvement, your results are positive and hopefully the October scan will bring good news.

    Every cancer patient I have met, myself included, endures an anxiety freak-out when facing a scan.  There are articles on some of the cancer association websites with tips on handling the anxiety.  My own approach is to limit my “scanxiety” to a couple of specified days (e.g., the two days before the scan) and ban myself from worrying about it otherwise.  This sometimes sort of works, at least for me.

    Regards, Mary

    #99049
    Hyprtypr
    Participant

    Hello. I am newly diagnosed (May 2019), 66-year-old female. Had surgery in June, clear margins, no lymph involvement, only 1 mass 9.3 cm in size. Oncologist started me on Xeloda for 6 months. Only got 1st round finished before cardiotoxicity put me in hospital. He has stopped everything and we are doing watchful waiting. First scan in October. Very difficult for me to be calm about this. I feel like I need to be doing some sort of treatment and am contemplating consulting a cardio-oncologist in hopes my heart can be protected medicinally while restarting Xeloda. Has anyone had a similar situation who is willing to enlighten me on outcome? Thank you in advance for any info. Prayers for everyone.

    Joslyn

    #98970
    bglass
    Moderator

     

    Hi Getwellsoon,

    Welcome to our community.  I like your user name, and also hope that your sister feels better.

    Cholangiocarcinoma has few symptoms in the early stages, and for many of us it is discovered when we are treated for something unrelated.  In your sister’s case, from what you describe, the cancer revealed itself with your sister’s pregnancy.  As difficult as that was, the earlier this cancer is found and treated, the better for the patient.  It sounds like your sister’s doctors have figured out a treatment plan for her.

    There is a lot of good information for patients and caregivers on this discussion board, and on the website of the Cholangiocarcinoma Foundation.  Please send any questions you have.   We are patients and caregivers so cannot give medical advice, but have a great collective experience coping with this rare cancer that may be of help to you and your sister.

    Take care, regards, Mary

    #98967
    Getwellsoon
    Participant

    Hi everyone

    My 32 years old sister got diagnosed with bile duct cancer, psc, and recently seen a lesion (bad tumor) in her liver that they could not see on ctscan or either MRI. They have seen it when they were changing her stents since her bilirubin is always very high that they can not start chemotherapy. She needs a liver transplant. But since they have seen a lesion in the liver they put her on hold. Thankfully they have burnt the 2cm bile duct cancer that has not been spread. She started having itchy hand and feet right on her due date. She was pregnant. And after few days of her delivery she turned yellow. And then they found out she has psc , and bile duct cancer. Anyway, but we have seen so many miracles on the way. Thank god for the new technology and awesome doctors. She is in UCLA hospital. I am glad that I have found this website to share put experiences and also read your experiences. Now we are just waiting on their decision for the liver tumor. I am sure everything will be fine soon. It just takes a long time. It is a long journey but fixable.

    #98526
    bglass
    Moderator

    Hi Cmkorn,

    Welcome to our group and please do send any questions our way.  There are a lot of patient and caregiver resources available on the Cholangiocarcinoma Foundation website as well.

    Keytruda is a complicated topic for our cancer.  A few patients have had incredibly good results – they tend to be persons with the mismatch repair deficiency (dMMR) or microsatellite instability-high (MSI-H) – related genomic defects.  These genomic defects are relatively uncommon for our cancer but a few patients are found to have them, and some (not all) of this small group have a good response.  Other patients without a genomic indication for Keytruda have also occasionally been treated.  My understanding is that such patients tend to have much less success with Keytruda but it has helped a few.  For that reason, my impression is some doctors are apparently willing to try Keytruda with certain patients lacking the genomic indication if their treatment options are otherwise limited.

    If you search “Keytruda” on this discussion board, you will find some of the patient stories.  There is a Facebook group related to immunotherapy for cholangiocarcinoma which can also be searched out.

    Best wishes that your husband’s treatment goes well.  Please stay in touch.

    Regards, Mary

    #98525
    bglass
    Moderator

    Hi Corgigal,

    Thank you for posting your story and congratulations on completing treatment.  I remember how good that felt especially after getting through the weeks of radiation.

    I hope your doctor has worked out a solid surveillance plan to keep an eye out for the cancer possibly making a reappearance.  Hopefully it won’t!  The most typical approach among our patients who have posted on the discussion board is quarterly chest-abdomen-pelvis scans during the first two years, as well as blood tests including tumor marker(s).  Years 2-5 this typically drops to two scans per year then an annual scan after five years.

    Please stay in touch and let us know how you are doing.

    Take care, regards, Mary

    #98520
    Corgigal
    Participant

    I am a 65 year old woman, diagnosed with distal bile duct cancer in Sept 2018.  I had a successful Whipple procedure at Stanford in Oct 2018, followed by 5 months of gem/xeloda chemo, and another month of radiation/xeloda.  I finished my treatment earlier today!!

    I was fortunate to be diagnosed fairly early, as I recognized the skin itching  and pale stool symptoms and saw my primary doctor immediately, since my mother got cholangiocarcinoma at age 89.  I thought I was being overly dramatic to worry about such a rare disease striking me too, but am very glad I had my symptoms checked out right away.  My mom was unfortunately diagnosed much later in her process, and passed away very quickly after her diagnosis.

    I’ve definitely had a few side effects from treatment– mostly a bit of nausea, hand/foot syndrome from the xeloda, and other skin issues.  Overall, everything has been very manageable, though not always fun.  I encourage anyone to consider treatment if it is possible, and to make sure you don’t ignore symptoms, but check things out.

    Fingers crossed that my treatment took care of any lingering cells and that I’m back to normal.  I’m glad to have found this group to continue my education on this disease.

    I’m happy to share my experiences if it is helpful.

     

    #98519
    Cmkorn
    Participant

    I am new to the group and thankful to read about  the successes and treatment options.  My husband is being treated for bile duct cancer but with no  mention of using ketruda. It seems all the questions I ask lead to more confusion. His cancer is in the liver and the T 12 vertebrae ……Please share anything similar …..We are in Pittsburgh and have good doctors …….

    #98218
    Constructioncm619
    Participant

    Thank you, Mary!

    Yes,  we did do tumor profiling by Caris Life Sciences out of Arizona but I was already taking the Keytruda.  The molecular testing was done as an option in the event the Keytruda and Gemzar/Cisplatan did not work and I needed to find another clinical trial for treatment.  At least that was my understanding of it.

    Have a terrific week,

    Chris

    #98207
    bglass
    Moderator

    Hi Chris,

    What a story – to have battled your way through two tough cancers, and with such a hopeful ending.

    Did you have genomic testing that suggested Keytruda would be effective in your case?  We have had a couple other Keytruda success stories posted on the board – one was a patient who had tested positive for the MSI high genomic defect.

    I hope the continued Keytruda infusions wipe out any cancer cells that might still be around.  Please keep us posted.

    Regards, Mary

    #98193
    Constructioncm619
    Participant

    Hello and I wanted to introduce myself and share my CC story.

    My name is Chris Shepard.  I went through 2 years and three months of immuno-therapy treatments (Yervoy and Keytruda) starting in 2014 for Stage IV Melanoma.  I had a tumor in my leg and the melanoma spread through my lymphatic system to my lungs and liver.  Thankfully, I responded well to the treatments and am currently in remission or NED.

    In April of 2018, I had a maintenance scan done that showed a “shadow” on my liver.  It was not present 6 months prior at my previous scan.  It turned out to be an aggressive CC tumor.  I had no side effects and was feeling really good as I was training for a 100 mile bike ride up at Lake Tahoe. My oncologist, Dr. Steven O’Day at the Saint John’s John Wayne Cancer Institute in Santa Monica, started me on Gemzar and Cisplatan Chemo infusions which are a treatment standard for CC.  He also found a couple clinical trials that showed initial success treating CC with immuno-therapy.  He reached out to Merck and made the justification case for me to treated with Keytruda while I was doing the chemo through a special Merck Access Program.  I was basically a one person clinical trial.

    October of 2018,  my scans showed the tumor had stopped growing and the CA 19 9 Enzyme was down to much lower levels.  Actually,  the tumor shrunk significantly and oncologist and surgical oncologist decided to remove what is left via surgery.  They did not know what caused the reduction in the tumor.  Was it the chemo, was it the Keyruda or a combination of both. In surgery, they removed my gallbladder, about 30% of my liver,  and removed lymph nodes in the area that they believed were impacted by CC.  The surgery was deemed a success and they were able to remove 99.5% of the CC.  My lymph nodes were impacted and I was considered Stage IIIB.

    They dissected the tumor and sent it to a lab for analysis to determine what caused the reduction in size.  The tumor was dead and it was encased in lymphocytes (white blood cells).  This showed the Keytruda was successful in energizing the T-Cells to recognize the CC tumor and attack it.  My oncologist (and my family) was very happy with the results and  I continue to get Keytruda infusions every three weeks to address the minute .5% of CC left in my body.

    I cannot tell you how fortunate my family and I feel to be in remission of two very serious cancer diagnoses in the last 5 years.  I wanted to share my experience / story to hopefully inspire and help others that are dealing with this horrible disease.  If you wish,  I wrote a more detailed description of the process on my Caring Bridge Website located at https://www.caringbridge.org/visit/chrisshepard

    Please do not hesitate to contact me if I can be of any assistance.  Wishing you all the best!

    Chris Shepard

    chrisshepard@earthlink.net

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