June 22, 2018 at 11:56 pm #97179richnkimParticipant
Sorry to hear that you had progression on the chemo after going through all of it. My husband Rich has the FGFR2 mutation and has been on 2 different trials for it. The first one was INCB054828 he was on this one for 9 months and he is now on the TAS120 for 5 months. With both he has had loss of finger/toe nails, hand and foot syndrome, dry mouth, high phosphorus levels (he took medicine for this) and severe bone/joint pain. The INCB trial they had to lower the dose because of the pain and the next month’s CT Scan showed growth so he was taken off it and the TAS120 he had a week break last month with a dose reduction and as of today he is on another week break because of the pain. With both he did have shrinkage of his tumors on the liver and the lungs, just when they lowered the dose there was always growth then. Of course this is him and you may not have these side effects, there are other people on both of these trials and they have not experienced these side effects, everyone is different even though they all have the same mutation.
I wish you luck with whatever trial you pick, my husband has said even though he had pain with each of these trials it was way easier than going through chemo, they gave him 3 months and with these trials it’s now been 18 months so they were worth their weight in gold in giving us more time.
KimJune 22, 2018 at 4:55 am #97172
It has been a long time since my update. 4 months ago I was on the edge of a decision re-surgery vs Folfirinox chemotheraphy as a clinical trial to control my metastatic ICC that spread to my liver, and a few isolated tumors in my abdomen which has growed significantly in a 3 months time when I was on a treatment break after 6 months of Gem+Cis. After talking to 3 different surgeons and various oncologists, I decided to enroll in Folfirinox trial. Surgery seemed very risky.
Now, I just finished my 8th cycle with Folfirinox. It is quite heavy chemotheraphy that gave me lots of nausea, lack of energy almost 1 week after each cycle. It kept the tumors in liver stable, however, latest scan unfortunately showed significant growth in tumors in the abdomen and peritoneal. My oncologist recommended to stop the Folfirinox trial. In the meantime, I also had genetic test on my tumor which showed IDH1 and FGFR2 mutations. There is a new clinical trial in the Netherlands on IDH1 mutated cancers looking at the dosage and effectiveness of Metformin And Chloroquine in IDH1/2-mutated Solid Tumors (MACIST) https://clinicaltrials.gov/ct2/show/NCT02496741 . Probably, I will enroll to this trial. Is there anyone in the forum who tried such kind of therapy before? If it doesnot work my second option will be a new clinical trial targeting FGFR2 mutation with TAS 120. If anyone has experience with these treatments, I would like to ask your opinions & experiences.
Thanks in advance, and have a great weekend already.
SemihFebruary 3, 2018 at 2:29 pm #96581bglassModerator
Hi Semih and nycdaughter,
Thank you both for posting updates.
re Folfirinox, we have had a number of patients on this board reporting good results and tolerability with this treatment. Stable is good, and it is great to hear your mom having a long stable run with this chemo.
re surgery, finding good surgical opinions with this cancer is important. Semih, best wishes as you analyze your treatment options and please keep us posted as you move forward.
Regards, MaryFebruary 2, 2018 at 6:53 am #96570nycdaughterParticipant
My mom was originally diagnosed in October 2015 with stage IV ICC (at age 77). She was on Gem/Cis for just under a year and she initially saw some shrinkage in her tumors. After a brief try with Pembrolizumab she was put on Folfirinox. She has been on this chemo for over a little over a year. The chemo has not shrunk her tumors but has basically kept her stable.February 2, 2018 at 3:40 am #96569
Thank you for all the supporting replies. I would like to give an update for my status. I met with my oncologist at AMC. He told me that there is no 2nd line standard treatment for CC. In the Netherlands, there is only a single clinical trial available, i.e., 4CC, which aims to observe the effect of Folfirinox on CC patients. It seems that Folfirinox is shown to e effective for advanced pancreatic patients, and Phase I clinical trial for CC patients also shows some promising results. It is still not curative but only pallative treatment. He advised me to enroll to this study. If it fails, then I am allowed to try new immunotheraphy drugs, e.g., Keytruda etc. in the Netherlands. All these treatment options will be covered by insurance. He also mentioned that a new surgery or radiotheraphy is not proven to be effective for recurrent CC cases. But I believe that every patient is different, one patient may respond well to a treatment whereas another patient may not. So I am exploring all options now.
I traveled to Turkey this week to meet a very famous surgeon in Turkey. He evaluated my case, and he believes that the recurrent lesions can be resected successfully. He told me that surgery is necessary for longer term survival since the lesion in the liver is close to an important blood vessel, and it can be late to operate if the lesion spreads to the blood vessel. After the surgery, a systematic treatment is necessary again. He has many patients in Turkey, and he is also very open to new treatments with immunotheraphy. He has some patients he successfully treated with Opdivo and surgery combined. He gave me quite some confidence, he is quite experienced in CC. Unfortunately, all these treatments probably will not be covered by my Dutch insurance since it is not a standard treatment. It is quite disturbing that they still look for a standard treatment where at this stage there is no standard treatment. I wish it had one, and I pursue that route easily. I am more inclined to go this surgery + systematic treatment iso trying a new chemotheraphy directly. I will make my decision in a few days and make a plan for my next treatment.
Have a nice day and great weekend,
SemihJanuary 27, 2018 at 1:36 pm #96551positivityParticipant
It seems when one wants a break, it is short lived before something else comes along. With my experience, observation time was every week which turned to every day and things could be stable one week then all of a sudden the following week a symptom reoccurs and medical attention is needed once more. It is continuous whether one is on treatment or one is not on treatment. The key is to be knowledgeable and keep up with the latest research and trials making the best decision for your case.January 27, 2018 at 10:12 am #96541jovionyParticipant
There’s no “observation time” with this cancer.January 26, 2018 at 11:34 am #96536gavinModerator
Thanks for letting us know about your visit to the Onc on Monday. I hope that goes well and that they will be able to help find the right trial for you. Good luck with that and please let us know how that goes.
My best wishes to you,
GavinJanuary 24, 2018 at 8:44 am #96526
Thank you so much for all the support. I will meet my oncologist at AMC Amsterdam on Monday. Maybe he can help me to find possible clinical trials for me. I will let you know about the outcome. Many thanks again.
SemihJanuary 23, 2018 at 12:08 pm #96516gavinModerator
Welcome to the site. Karend asked me to post this info for you as she is having issues right now posting on the boards for some reason. So the following is not from me, it is from Karend.
All the best to you,
Melinda Bachini may be able to help you connect with someone in the Netherlands, or at least with the family of one person I know who lived in the Netherlands. He attended the CCF meeting in Salt Lake City back in 2016 I believe, and had been receiving care at Memorial Sloan Kettering in NYC. He would fly back and forth to receive treatments. I’m probably remembering incorrectly, but I thought he had an HAI pump.
This support group on Facebook is super helpful too https://www.facebook.com/login/?next=https%3A%2F%2Fwww.facebook.com%2Fgroups%2FCHOLANGIOCARCINOMAsupportGroup%2F
You may very likely find members who are from Europe or other countries, and perhaps discover how they are navigating treatment or seeking acceptance into clinical trials within the US or elsewhere. It is a really wonderful group, and ties in well with the information provided here on the discussion board. 🙂
Here is some information for you from MSKCC (Memorial Sloan Kettering Cancer Center). https://www.mskcc.org/cancer-care/types/gallbladder-bile-duct/treatment
Clinical trials info/available trials at MSKCC https://www.mskcc.org/cancer-care/clinical-trials/search?keys=cholangiocarcinoma&disease=All&phase=All&investigator=
Drs. Ghassan Abou-Alfa and William Jarnagin are regular attendees of the CCF annual meeting in Salt Lake and are the PIs on these two clinical trials. You could always reach out to them directly and ask their nurses/clinical trial assistants for advice.
-KarenJanuary 23, 2018 at 9:33 am #96515bglassModerator
Thank you for your note.
I have not had experience with FOLFIRINOX but I know some of our board members have had good results from this treatment. If you use the search engine at the right on the discussion board page, you can find the patient stories plus some research articles Gavin has posted on this treatment.
The clinicaltrials.gov site shows a Keytruda trial in the Netherlands with a contact name (Caroline Doornebos tel:31 23 515 3362) who appears to be Merck’s medical director for Netherlands and who is listed as the point of contact for multiple clinical trials. Is this the person you have tried to reach?
Best wishes as you evaluate your options for your next round of treatment. It is a hopeful time as new treatments for CCA are coming on line. A few years ago, some of the options you are looking at were not yet on the horizon.
Regards, MaryJanuary 23, 2018 at 5:44 am #96509WmeiselParticipant
Dear Semih, Sorry for all you are going through and thanks for being open to share what you are going through and you hopes and anxities for what lie ahead. I wish you were able to attend the foundations conference at the end of the month in St. Lake City. I am planning on going and will take notes. I too struggle with this line between curitive and pallitive . In the end we need to fight, fight fight and soudns like that is what you are doing. Every step of the way i have pusehd forward, not waiting when i was told to be patient and asking for what is not the “norm” I made my surgeon promise me that if the spot on my liver was indeed a return of the cancer , that he woudl operate and I told him i woudl not leave the office until he did. SO i hope you can find both strength in yourself and grace on the part of others. Please feel free to reach out either through the discussion board or directly to me. Good luck and prayers!
Rev. WayneJanuary 23, 2018 at 4:52 am #96508
I would like to give a short update on my status after chemotherapy.
I received 6 cycles of Gemistabine+Cisplatin for 1st and 8th days and rest on 15th, having 21 day cycles. My main complaints were extreme fatigue, but other than that it was better than what I expected. The lymph nodes shrank 30 %, it was not that bad. After the chemo my oncologist advised 3 month observation time without any treatment. However, latest CT scan in mid January showed 2 new metastasis one in left abdomen about 7 cm which gives me some pain on the left abdomen, and another one on liver close lymph nodes about 4 cm. Today, I am having all high and downs, trying to figure out what this means, and looking for any options for extending my life. I expect that the oncolgist in the Netherlands would like to try another chemotheraphy FOLFIRINOX . Does anyone have similar stories or experience with this chemo? Would it better to follow an immunotheraphy based second line treatment?
p.s. I tried to contact Merck about their Study of Pembrolizumab (MK-3475). However, it seems that the contact numbers are belonging to high management, not for patient contact. Is there any other contact info for clinical trials?
Thanks, and have nice day.
SemihMay 11, 2017 at 5:09 am #94843debnorcalModerator
I am glad you found us and have benefitted from the knowledge and experience of our members. Thank you for posting your story as well.
I agree that it would be wise to give the chemo a try. It is quite possible that your tumor(s) will respond well to it. Despite all the negative information available on line about the chemo, it is generally better to start with the first line treatment that has proven results for some before moving onto an unproven trial. Additionally, the Netherlands DRUP protocol seems to indicate the targeted drugs available through the various trials are only used after other treatment options show no response.
Best of luck to you. Please keep us posted.
DebbieMay 11, 2017 at 4:10 am #94842marionsModerator
Semih…..so sorry to hear your story. I have learned that affected lymphnodes are indicative of systemic spread of the cancer. In this case chemotherapy is the first choice of treatment. Having said that, dear Semih, palliative care does not mean end of life care. We know that other than a curative resection treatment of any kind is palliative in nature, but what does that mean?
It is likely you respond well to the chemotherapy treatment and the cancer is kept at bay. This then may open the door to clinical trials.
Prior to doing anything I would advise you to get in touch with Netherlands Center for Personalized Cancer Treatment, which is conducting The Drug Rediscovery Protocol (DRUP) trial.
I realize inclusion in this trial requires a measurable tumor, but perhaps you can receive some expert opinion re: the next step for treatment.
Please keep us posted.
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