Tagged: Our story ...
October 21, 2016 at 11:41 pm #83906
tracy…..you are welcome, we are in this together and you are a fantastic advocate for your Mom.
MarionOctober 21, 2016 at 8:25 pm #83905tracy0912Member
Thank you so much for all of this invaluable information. I have felt so devastated and overwhelmed by my mom’s diagnosis and now feel a little more empowered to try to find out all I can. Thank you for what you are doing as it’s making a change in my life right now.September 2, 2016 at 6:14 am #83969
ladonner….. Phase 2 is expected to open by end of year. I wish for continued success. Please keep us in the loop and continue to engage with us. We are in this together.
MarionSeptember 1, 2016 at 6:25 pm #83968
ladonner….I am trying to find the answer to your question. Hoping for a quick response.
MarionSeptember 1, 2016 at 4:49 pm #83967
The trial coordinator at Mayo had indicated to us in about June that the study had entered Phase 2. Since I came in under Phase 1, I guess I stay under that protocol until or unless I develop too many side effects or it clearly stops having any effect on me.August 30, 2016 at 11:54 pm #83966
Thanks much. Here is additional information:
MarionAugust 30, 2016 at 11:16 pm #83965
Thanks! My trial drug is just called Research CX-4945, by Senhwa. The Study number is S4-13-001.August 30, 2016 at 8:55 am #83964middlesister1Moderator
Welcome to our group and congratulations on the success so far with the treatments. As Marion mention, all patients are different. My mother was also told the one year (inoperable ICC) and we’re coming up on 3 years and she’s feeling well. In just those 3 years, we are seeing many more trials and drugs approved for CC which will eventually change the statistics patients are told upon diagnosis.
Best wishes and let us know how you are doing,
CatherineAugust 28, 2016 at 6:03 pm #83963
Lynnette……welcome and congratulations on making the leap to internet engagement. You have made a great choice, dear Lynnette, in that this site is populated with the kindest, nicest, most helpful people I ever have encountered. First and foremost, congratulations on the spectacular results with treatment. Understandably you are concerned about the predictions of life expectations, but please keep in mind that no one can predict for sure the outcome of each individual, this includes specialists opinions as well. Hence try to focus on being around for a long time to come and await to benefit from newly developed treatment options. There are available and others are here to tell us about it.
Again, we are happy to see you on board and expect our conversations to continue for a long time to come. I am wondering, dear Lynnette, what is the name of the third agent added to Gemcitabine and Cisplatin?
MarionAugust 27, 2016 at 10:05 pm #83962
I am just joining the discussion board. My name is Lynette. I am 57 years old. Almost exactly a year ago I went in for laparoscopic surgery to have my gallbladder removed for supposed gallstones. When I awoke from anesthesia the surgeon explained that he had not completed the procedure because when he had gone in he had recognized he was seeing a tumor on my liver, so he took a tissue sample and pictures and got out. I was referred to an oncology surgeon who ordered more tests, and a week later he informed me the tumor was too large for me to be a candidate for surgery, and I was referred to an oncologist. The diagnosis was of cholangiocarcinoma; it was subsequently classified as intrahepatic. The oncologist confirmed that my cancer was unresectable, and was stage III into stage IV. He indicated that if I had no treatment, I had about six months to live, and that if I entered treatment, I had 12 to 18 months.
In retrospect I had probably been having some symptoms for nearly two years prior to my diagnosis; I had been having sharp pains shooting from my shoulder blades up to my neck, for which my GP had diagnosed a strong anti-inflammatory pain pill, which had been generally effective. I now understand this pain was most certainly referred pain from the liver area. I had only gone back to my GP last year because I was starting to have more heartburn issues. An ultrasound was done which was interpreted as indicating that I had many gallstones, bringing me to the laparoscopic surgery.
Anyway, after the dire prognosis of the oncologist, I sought and received a referral to Mayo Clinic in Rochester, MN. The gastro-oncologist there confirmed the diagnosis and the stage, but indicated there was a trial available that might be beneficial. I started that trial in late September 2015. I have standard chemo of Gemcitabine and Cisplatin on Wednesdays, and Tu., We., and Th. I take an oral trial chemo medication, all on a two week on, one week off schedule. My tumor has shrunk from a starting point of about 11 cm to about 2 cm.
Since June this year the tumor shrinkage has stopped but is stable. I should mention that there is one and maybe two peripheral tumors elsewhere on the liver, which are extremely small. The Mayo oncologist is positive yet, as there has been no growth. I confess that my expectations of a miracle may have been too large, so I am frustrated that the tumor is not simply disappearing. It appears that my best option is simply to continue the same chemo regimen, including the trial drug, as long as I am able. I am starting to have some neuropathy in my fingertips, however. My Mayo doc indicates that if the neuropathy becomes too significant, I could continue the regime minus the cisplatin.
Given the anniversary of my diagnosis, I have been doing more self-reflection and reexamination, including re-reviewing internet research. Nothing I read gives me much more positive perspective than my initial oncologist’s prognosis. Even my Mayo doc does not contradict that prognosis, even though a year’s gone by and my tumor has shrunk so much. As I look forward to the unknown, I’m doing something I’ve never done before by joining an internet discussion board. Not surprisingly I know no one else with this cancer, and don’t believe those with other cancers can really relate to what we are dealing with. So I am looking forward to sharing experiences with others who are in the same or more similar position to myself.August 11, 2016 at 9:21 am #83961middlesister1Moderator
Thank you for sharing your story and for supporting us!
CatherineAugust 10, 2016 at 9:42 pm #83960
Michelle…. so happy to see you on board and thank you for all you do.
MarionAugust 10, 2016 at 7:39 pm #83959mvprattParticipant
I want to introduce myself. My name is Michelle Pratt. I am a now 5 year survivor of intrahepatic cholangiocarcinoma. I was first diagnosed around July 4th 2011. I had a few stomach pains and I had a coworker give me an examine at work and she followed up with a recommendation for ultrasound. Well After writhing in agony all night I finally felt better in the am but decided to go to my family practitioner just in case there was something wrong. I was driving to New Jersey with my two children who were toddlers at the time and I just knew I would have another ” gallbladder attack” when I was stuck in the Washington DC holiday traffic….lol. Instead my provider saw me the day before I was going. She insisted that I get an ultrasound just to be safe…… wouldn’t you know it….. a large intrahepatic tumor was found on the imaging. from there I was referred to a go doc for a stat endoscopy/colonoscopy and a diagnostic mammogram. Those too came back negative. The GI doctor sat on the side of my bed and said he wasn’t sure what was in my liver but he felt that I should see a surgeon right away. He thought that I had an adenoma related to long term birth control pill use. Sure enough my liver was biopsied and the staining resulted in cholangiocarcinoma. From there I went for cardiac clearance, a chemo embolization and then half of my liver resected. I had a pretty average recovery and was getting ready to go back to work however my oncologist decided that I should have 6-7 weeks of radiation and oral chemo before i actually set foot back on campus.
I truly thought that I was finished with cancer…well cancer had a different idea….
Last summer. I was diagnosed with a recurrence of my cancer. I had been having back trouble for several months and was basically told that I was overweight and should go to physical therapy. On one visit to the Emergency Department I had lost my temper and demanded a MRI of my back before I would leave…. I also decided to throw my Nurse Practitioner credentials around to ensure that I was taken seriously. As it turned out my back pain had nothing to due with my weight but was instead a large tumor that was consuming my L5 vertebra. In addition to the tumor in my spine several small tumors were found in my lungs. I was admitted to the hospital to a neurosurgery service and no one wanted to talk to me about my cancer. After several days of drugs and steroids I finally started feeling better and firmly requested that my oncologist be called. Apparently the one on call that week told my family I had just a few ” months” to live. I had no idea he had said this….. it took months for my husband to get over that news….. and to see it was inaccurate. My oncologist finally showed up ( we had just had my 4 yr check up and decided that I didn’t need but one more scan). The only thing I asked him was ” can you fix this and keep me alive until something better comes along.” Tearfully he said yes and that was it….. my radiation oncologist came by within the hour and by the next day I was discharged and getting ready for radiation to my back and starting chemo.
Fast forward to December 2015 I learned about the Cholangiocarcinoma foundation and that there was a conference held in Salt Lake City in February. I had a strong feeling that I needed to attend the conference but I was out of funds as I had been living off of savings and donated leave. My children gave me the idea to try Go Fund Me and try to get the money I needed for my trip. I was overwhelmed with my family and friends generosity….. My best friend/colleague and I were able to attend due to the money that was donated. At that conference my life took another turn for the best. I met an amazing room of survivors and medical professionals who were passionate and dedicated to help fight this disease. I learned about Facebook groups that were formed and joined. I have found overwhelming support and friendship from these groups. In addition I learned that the foundation had a Nursing Advisory Board. I then interviewed for a position as I felt that I held a unique position as a patient and Nurse Practitioner. After a few meetings I learned more about the discussion group and viola… here I am.
I did not join any groups or get involved in any type of cancer community the first go round of cancer. This time I had a strong desire to share my story of hope ( I am now a five year survivor ) and try to advocate and educate the community about this terrible cancer. I am determined to see updated data and information reflecting the change in the face of this cancer and that there are survivors… I want someone who is newly diagnosed to know there is hope, current research and treatments and most of all SURVIVORS.
It is with great pleasure that I now join the online discussion community and I am looking forward to sharing my experience and learning so much from everyone else.!!!April 6, 2016 at 3:28 am #83956
Hello, healthiest unhealthiest Bruce around. Glad you have found us; we are happy to see you on this board. So sorry to hear of your current health issues and hope you are on the road to recovery from the shoulder surgery.
Biliary surgery is complex and should be performed by a physician performing a minimum of 20 such procedures per year. Please don’t hesitate from asking questions such as:
How many biliary surgeries have you performed?
•How long will the operation take?
•Will I need to stay in the hospital for this surgery? If so, for how long?
•Can you describe what my recovery from surgery will be like?
•What are the possible side effects of my surgery, in the short term and the long term?
How much of my liver will be removed?
Beforehand though, you would want to familiarize yourself with this disease by using the below link:
Who are you consulting with and what are the dates?
MarionApril 5, 2016 at 3:21 pm #839572aParticipant
Recently diagnosed. Pre surgery appointment with at least 2 doctors. I’m 60 married, consider myself the healthiest unhealthy person around, unable to work because of 2 major shoulder surgeries, 2 parathyroid surgeries, and thyroid cancer, getting care through Indiana University Health Center.
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