October 30, 2016 at 1:13 pm #92335redParticipant
Hi Lorna, Thank you and your Father for sharing this remarkable story. It is obvious that you both are fighters and strong people with incredible determination to win over this nasty disease. My Hubby was diagnosed in July 2016 and was fortunate enough to be eligible for resection in August 2016. It was successful insofar as removing the tumor in the main bile duct, but the margins were not clean and there were some malignant lymph nodes. (By the way, his recovery from the surgery was extremely difficult.) Thus he is now doing gem/cigs chemo. His tolerance of the chemo has been really good so we feel very fortunate.
From your posting, I assume that you are the primary caregiver and I would love to hear how you are dealing with this responsibility. I find that it is a most challenging position to be in and it would be helpful (at least to me) to know if others are going through some of the same things that I am.
Here I send my best wishes to you and your Father for continued success in his therapy.October 11, 2016 at 9:29 am #92329gavinModerator
Welcome to the site and thanks loads for sharing your dads story with us all, much appreciated as it will be of great help and benefit to others. I am sorry to hear what your dad is going through with everything but I am glad that you have joined us here as you are in the best place for support and help and will get a load of both from everyone here. I went through this with my dad too back in 08/09 and I so know how you are feeling.
Please keep on coming back here and let us know how everything goes. You are not alone in this as we are here for you. And yes, the biology major did come in handy although I know you would not have wanted to be using it this way.
My best to you and your dad,
GavinOctober 10, 2016 at 10:43 am #92331chinesechickParticipant
Thank you for sharing your dad’s story. My mom’s been battling CC since March of this year while on a trip to Taiwan. She’s been on 2 clinical trials. First one worked a little. 2nd one didn’t work at all. I’ve heard great things about Keytruda, which is not available here.
Planning on returning to the US next week and continue this battle.
Aloha, NancyOctober 10, 2016 at 3:55 am #92330middlesister1Moderator
Welcome and so many thanks for sharing your dad’s story. It will benefit so many others . Best wishes for continued health,
CatherineOctober 8, 2016 at 4:33 am #92336marionsModerator
Thanks, Lorna. The way I understand it, MSI is a marker for Lynch syndrome, but also is related to colon cancer, gastric cancer, endometrium cancer, ovarian cancer, hepatobiliary tract cancer, urinary tract cancer, brain cancer, and skin cancers.October 7, 2016 at 11:03 pm #92334lornakParticipant
Marion. The MLH1 can be a marker of lynch syndrome if it is in all of your cells. My dad had testing done on his tumor and his body cells and the mutation is only in the tumor. This means he does not have lynch syndrome, but the tumor is impacted by the keytruda.October 7, 2016 at 10:56 pm #92333lainyParticipant
Dear Lorna, welcome to our remarkable family and the best place to be for CC. Congratulations to your Dad for surviving the bumpy road but the news is all good and I wish for his continued success. Please keep us updated on Dad’s progress and thank him for having you share his story as it could be of great help to other CC patients.October 7, 2016 at 9:53 pm #92332marionsModerator
Lorna….welcome to our special site devoted to cholangiocarcinoma. Thank you and please thank your Dad for allowing to share this incredible story with us. It is very much appreciated.
What a roller coaster you have been on!!!! We have had several reports on the FUDR pump, this is the first we have heard of it causing a severed artery.
I still don’t quite understand DNA Microsatellite Instability,but know is it a marker for Lynch syndrome, which also can lead to cholangiocarcinoma. All in all, I believe that most (if not all) genetic testing includes that of MSI.
Congratulations on the incredible success with the immune checkpoint inhibitor. Some people have had similar results lasting for several years or longer and they are still here to tell us about it.
Again, dear Lorna, thank you for joining in and please continue to share with us.
MarionOctober 7, 2016 at 9:13 pm #12443lornakParticipant
My name is Lorna and 13 months ago, September 2015, my father was diagnosed with Cholangiocarcinoma. He was given 11-15 months to live. In the past year we have been on a serious roller coaster of emotions. As we fight this disease. I have asked my father’s permission to share his story with the board in hopes that others can hear about treatment options and learn from what our family has been working through.
In September 2015, after a year of complaining about of a dull stomach ache, my father had a scan which showed a single 3.7×4.9cm mass in his liver and bilary ducts which encased the right hepatic artery. Because of the tumor location he was not a candidate for resection. At that point his oncologist at Siteman Center in St. Louis told him about a clinical study he could apply for, we did and he was accepted. At the end of October 2015 my father had surgery to remove his gallbladder and implant a hepatic artery infusion pump that would deliver chemotheray (FUDR) directly into the tumor. (You can read about him preparing for the surgery here: http://www.stltoday.com/news/local/columns/bill-mcclellan/mcclellan-stepping-into-a-woody-allen-movie/article_ca6aecfb-7be2-5dd8-b352-783403e28853.html)
The surgery was difficult, but eventually he recovered. His treatment started two weeks post surgery. He recieved FUDR into his pump once a month and gym/oxi twice a month. After two months on this treatment he had another scan and it showed the tumor had shrunk to 3.6×2.2cm. We were ecstatic. But he had also had a reaction to the treatment and as a side effect he had developed an abscess on his liver. He was admitted to the hospital for a week. Once he was discharged he resumed treatment and started to feel pretty good again. So good in fact that he and my mother decided to fly to AZ to visit my younger brother and get out of the nasty St. Louis February. While in AZ he collapsed, starting having bloody stool, and was rushed to the emergency room. It turns out that the pump – the life saving pump – had severed his artery and he was internally bleeding. He had emergency surgery and the doctors in Tucson removed the pump. (You can read about it here: http://www.stltoday.com/news/local/columns/bill-mcclellan/mcclellan-everybody-don-t-have-somebody/article_3ea0a982-84f4-5f6f-9659-aecaf7723205.html)
So that treatment was out of the question and we were on the hunt for something new. The next option for my dad was to have super intense radiation treatment for 15 days straight. He went for it. At the same time his oncologist Dr. Tan decided to have his biopsy analyzed just in case there was any treatment that might work out for him. In June 2016 after the radiation he had another scan that showed the tumor had continued to shrink and was now 3.4×1.7cm. At this point the exciting news: The genetic testing had come back that his tumor was missing a DNA mismathc repair enzyme mLH1. This means his tumor has microsatellite instability. (Thank goodness I majored in Biology in college – or I would not understand any of this!) His doctor suggested we try Keytruda. He petitioned Merek and under the compassionate care program he was given the drug. After three treatments his liquid biopsy came back with there no longer being any evidence of the cancer in his blood and his doctor decided to do a scan to see what was going on. The scan on 8/24 showed the tumor now at 1.8×1.1cm, from 3.7×4.9cm almost exactly a year ago. Since then my father has had two more treatments of Keytruda and two weeks ago he had knee replacement surgery. We are feeling hopeful and enjoying every moment we have together because with this disease you never know. The doctor mentioned Keytruda can stop working just like chemo, I haven’t heard of that happening, but I believe it does.
If you have made it this far, thank you for reading, I hope our story can help others with CC. My biggest suggestion is to get the genetic testing because if the tumor is MSI there seems to be something that can be effective.
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