April 17, 2012 at 4:08 pm #59907patty-in-illinoisParticipant
I have stage V ICC. I was diagnosed in March of 2011 after a trip to the e-room for what I thought was gall bladder pain. After CT and MRI, it was confirmed I had a tumor in the liver. I then went to Mayo Clinic for a second opinion, where they offered pallative care. I didn’t like that so I contacted MD Anderson and met with Dr. Javle. I had NO pain, no itching, no weight loss although I was very active and rode my bike up to 25 miles a day or walked. I also went to the gym. Dr. Javle stated I had the ICC for atleast 3 years. Mine is slow to grow but slow to shrink. For the first year (after diagnosis) it was pretty stable….I had Cisplatin/Gemzar for almost 6 months along with Tarceva. I then had an allergic reaction to Cisplatin so we switched to Xeloda and Gemzar along with Tareva. (In between all of this, I had blood clots, was put on a blood thinner, had a brain bleed due to blood getting too thin (I was in the hospital for 9 days)so they pulled me off the blood thinners completely, then I got the blood clots again. Now I take Enoxaparin as a blood thinner and it is tested weekly for clotting factor). I then had a reaction to Xeloda and they just put me on Tarceva and Gemzar. While on just the Tarceva and Gemzar, my tumor decided to get “brighter” and I had two lymph nodes close to the liver that were FDG avid. After a biopsy, they showed to have cancer cells in them. So, I am moving to Houston, Texas to get 5 1/2 weeks of IMRT starting April 23rd and will also take Xeloda again and an allergy pill to hopefully keep from having an allergy from it. I still do not take any pain meds. So I basically had it for 4 1/2 years total with no symptoms. I have been told I will never be a candidate for a transplant nor a resection (unless my tumor shrinks alot). I NEVER ask when my time is up or how long I have to live. I don’t like deadlines and I would just feel like it was a ticking time bomb. Live each day, let the little things go by the wayside and just stay positive!April 17, 2012 at 6:01 am #5990632coupeParticipant
As far as symptoms, they vary from case to case. I had what appeared to be typical gall bladder disease symptoms but for the most part felt pefectly healthy – clearly I wasn’t. As far as the docs giving you a timeframe, I just wouldn’t accept that. God alone knows when your time is up. It’s been mentioned that you should get a second and even third opinion. I completely agree. You will read posts here describing cases similar to yours where they were able thru various protocols to shrink tumors and finally resect (which is apparently the only hope for a cure). There are also a couple of cases here where they had a liver transplant to affect a cure. Exhaust all of the possible sources – don’t give up nor give in. Listen for what God is saying to you – He wants to give you clear direction. Follow His lead.
Grace and Peace,
PS. I was 51 when diagnosed – I’m now 67.April 15, 2012 at 4:33 pm #59905tlsinftlMember
My parter Ben was diagnosed 19 months ago with ICC he had about a 7.5cm tumor in his liver with metastesis to the surrounding lymph nodes and the lining of the stomach. His original symptoms were a full stomach and some vomiting, and he started to turn yellow (because the tumor was blocking his bile duct). In some of my original posts I was fairly detailed about his symptoms, treatments, etc. so if you do a search (advanced search) under my user name you can see all my posts. Ben finished his first round of GEM/CIS last April and is currently just over halfway through the same protocol since he seems to respond to it fairly well.
Let us know if you need anything.
tomApril 13, 2012 at 2:37 am #59904pamelaParticipant
My daughter, Lauren, is the one with Cholangiocarcinoma. She just turned 26 in March. Hers is intrahepatic. She has one large tumor that started out the size of a canteloupe. It was17cm. x 14cm. It is now 12 x11 thanks to chemo. She has a few small lesions in the left part of her liver as well. She had pain in her upper right side, back pain, weight loss of 50 lbs., and got full after like 4 bites of food. She wasn’t diagnosed until around 5 months after her symptoms started. We thought she was having gall bladder problems at first. Then she was misdiagnosed and the doctor said she needed physical therapy for bad posture and having a large chest. Needless to say, we now have a new primary care physician. He ordered a CT scan after seeing her for 5 minutes. Please don’t give up hope. Lauren has had 15 rounds of chemo and is now being evaluated for radioembolization. There are so many treatments out there. Having a positive outlook is key. I wish doctors would not give timetables. Nobody but God knows when your time is up. Lauren chooses to live each day to the fullest and appreciates all that life has to offer. She does not dwell on the negative and never gives up hope that one day she and everyone else will be cured of this cancer. Please feel free to ask any questions you might have. Take care.
-PamApril 13, 2012 at 2:31 am #59903peggypMember
My husband’s prognosis was 7 months. He has Stage IV ICC. His first symptom was a dull pain in his right side. In July, it will be 4 years. So don’t put a timeline on your life. Take one day at a time and set goals and do things that you can while you can. John has had some side effects from the different chemos he’s been on, but his biggest complaint has been fatigue and stomach pain. He still makes himself do as much as he can each day, and he knows when to quit. He rests more during the day while the kids are at school so he can be up when they get home. Prayer is a powerful thing and I’m sure that has helped John as well. Stay positive and seek other opinions and research as much as you can. God bless you and your family. PeggyPApril 13, 2012 at 2:17 am #59902pcl1029Member
“My questions are what are typical ICC symptoms and how do they usually progress. Please be detailed. My prognoses is incurable and inoperable. So I need to know what to plan for down the road. Worst case scenario. The Doctor gave my 18-20 months. Again please be detailed.”
The best case scenario is you will live to the average of 78 years old for a man.
The worst case scenario is what the doctor had said to you 18-20months.
No body,including me,a patient of ICC for 35 months now,will know for sure what the prognosis will be.(incurable or inoperable are two relative terms of uncertainty;it does not mean as a definitely unchangeable outcome .)
There is always hope out there.
Since you are on the chemotherapy,your ICC symptoms are mostly related to the side effects of the chemo agent that you received;but it may or may not happen to you or it may happen to you in different degree. Tireness, anemia,neutropenia, etc. just to name a few.
If you really want to know,please read my discussion message about my-sister-in-law’s case under” the remembrance forum”. at the end of the message ,I listed her entire CCA journey of 15 months from the beginning to the end.
My friend, you are only 54. if the chemo agents works and your 2 lymph nodes disappear first,radioemoblization may give you enough mileage to enjoy life till the cure coming to you. In short, to have a positive attitude is ,in my opinion,the best medicine to prepare for this long and winding ICCA journey. good luck and
God bless.April 13, 2012 at 1:46 am #59901lainyParticipant
Shlamoney, go to the top of the page, click on the word Profile and it will take you to your Profile. Arrow down to Current Signature and write in there what ever you wish.April 13, 2012 at 1:39 am #59900
Question, How do you put a self description at the bottom of the page as I see others have?April 13, 2012 at 1:36 am #59899
All-star Can you tell me your story if you’re willing. It is so frustrating to have this disease and not really feel too bad about it physically except for eating as you mentioned. I have lost 25 lbs and have been able to maintain it lately. Are you on treatment and if so what is it. I have had my diagnosis since 2/22/12 and was told 18-20 months. Praying and hoping for a miracle. I’m 54 but you are so young. I am so sorry. I pray your youth and strength will aid you in your fight for life.
I am new to these discussions so I hope I am not crossing the line with my questions. God bless you. I have a deep faith in God and what he can do to help us. My wife Cyndi and I have raised 8 children and we have 100’s of friends, family and church people praying for a miracle. We would love to add you to our prayers if you want. Prayer is a real force and God himself commands us to pray, so this is our hope. Thank you for your reply. Take care……April 13, 2012 at 12:10 am #59898tiff1496Member
I have stage 4 intra…
My main symptom was weight loss, and just not wanting to eat.
The pain I had that sent me to the ER was under my left breast, kinda in my chest, but I could tell it wasn’t a lung. The pain in now gone.April 12, 2012 at 2:43 pm #59897lainyParticipant
Dear Shlamoney, my husband had ext. CC so I cannot be of help on symptons however, everyone is so different and we don’t listen to time frames. I agree on a second opinion and 3rd if needed. We heartedly love other opinions. Very important!April 12, 2012 at 2:27 pm #59896jathy1125Participant
Welcome-and sorry you had to find us. I am a CC survivor and I was considered terminal and inoperable, but I was lucky to be diagnosed and put in the care of one of the top doctors and that saved my life! CC is so rare and so many new treatments are developing at limited cancer facilities that doctor and hospital can make a major difference in your outcome. My miracle was at Barnes-Jewish Hospital in St. Louis MO. under the care of Dr. William Chapman. More top doctors and hospitals are Dr. Javle at MdAnderson, or our new board member Dr. Chris Sonneday. The one common thread on this site (other than CC) is being pro-active and getting second, third opinions till you find one that you are comfortable with.
Please read my story and one other CC success on my FB page (Catherine Sims Dunnagan) for HOPE!
Lots of prayers for you-CathyApril 12, 2012 at 1:20 pm #6652
I have a 5cm tumor in my right lobe with two marble sized lesions elsewhere in my liver & two swollen lymph nodes. I was diagnosed with ICC due to a stomach ache I had for four months. Two days before my chemo treatment began my stomach ache stopped and I now have no symptoms whatsoever. I am now on my first round of treatment with Gemzar/Oxaliplatin.
My questions are what are typical ICC symptoms and how do they usually progress. Please be detailed. My prognoses is incurable and inoperable. So I need to know what to plan for down the road. Worst case scenario. The Doctor gave my 18-20 months. Again please be detailed.
- You must be logged in to reply to this topic.