1 (edited by PCL1029 Tue, 06 Sep 2011 15:45:52)

Topic: A Glance of Cases of This CC Web Site for Newly Diagnosis Patients

Hi,when I first joined this web site, one of my purpose was to look for examples about this illness and try to compare to others who have similarity of my CC to make senses of my diseases.
I found it is difficult to do so. so here are 52 cases complied from the messages our members provided to this web site. Hopefully make it a bit easier for the newly members. Iwll try to add more as the time goes by.

Case 1   My mom, Kathy, is 67 and on July 18th, was diagnosed with CC.  She is in Stage 4, non-resectable.  For the past 5 years, she has been complaining of stomach aches and pains. She tried one round of chemo, but she couldn't handle the side effects, and so now we are going with hospice.  It was her idea, but her doctor says it's time.   jessie girl1679/2011

Case 2  My father who is 53, was diagnosed with cholangiocarcinoma on January 21, 2010. They originally found two lymph nodes affected, lesions on his diaphragm, and one tumor that measured 7.5 cm. They removed one of the lymph nodes during exploratory surgery and told me that his tumor was unresectable.He has been receiving Gemzar and Oxaliplatinum chemotherapy every week since. We have been using this therapy because the tumor is unresectable.In August, he received a treatment of the SIR-Spheres micro-spheres. The one month scans show that the lesions on the diaphragm are gone, the one lypmh node that was remaining after surgery is now .5 mm and not worth mentioning anymore, and that the one tumor is actually two small tumors that are shrinking! One tumor has already sh.unk about 1 cm! My father is being treated at Cleveland Clinic.---1hopefuldaughter15 9/10/2010

Case 3  My mom was 86 when diagnosed, but she chose not to pursue radiation, full chemo, or surgery. Her oncologist didn't think she would last a year, as she already had had open heart surgery, she was diabetic, had glaucoma and macular degeration, and other health issues. Mom continued her daily prayers, with beads in hand almost every time she laid down. She almost made it 3 years after that! No matter what they say, they do NOT know, so do not give up hope. Louise 9/7/2009.

Case 4  My husband is 14 months post whipple surgery done on 06/23/10. In the past year he received chemo using GEMZAR and 5FU (only @ 3 wks of 5FU due to intolerance), and 25 radiation txs.  His 08/12/11 PET scan revealed three cancer recurrences in the "surgical bed" areas. RAS (radioactive ablation) cannot be done as they can't go through bowel or a spine. So chemo is our only choice right now for this 2nd battle with cancer.  Today, 08/19/11, we meet with his onocologist for a second time to discuss pending treatment more. My husband will also receive his first chemo using GEMZAR and CISPLATIN today.  appreciatehelp. 9/2011.
Case 5   My mom (age 57, stage IV inoperable CC) had chemo embolization done on July 27th which we just found out, did work...she had tumor necrosis and shrinkage!  The next one is scheduled for Sept 28th.  She has still been very tired and weak but up until yesterday, has had no pain. Katielinn 9/3/2011

Case 6  My name is Susie and I'm 31 living in Portland, OR.  I had a liver mass discovered in April and underwent a left hepatectomy in May of this year.  They also removed my gall bladder.  It turns out I have stage II cholangiocarcinoma, the intrahepatic kind.  I have no mets, negative lymph nodes and clean margins but my tumor was about 5 x 6 cm, so kind of big. I am recovering well after surgery and pretty much feel back to normal. ; Hello all. I received a left hepatectomy about 4 months ago for intrahepatic CC, stage II.  I'm just about to finish my 3rd cycle of chemo with Gemzar/Cisplatin.  It has been recommended that I get 6 wks of chemo radiation.  I'm getting very scared of the radiation.  They were able to remove my whole tumor with clean margins, though one was very close.wa llsm1 9/3/2011

Case 7  I was diagnosed on April 16, 2010 and had successful resection surgery of the liver (about 80%) of the liver.  It is all back now and have been on Gemsar for the past 3 months.  Just had my first CT scan and it seems something has shown up on the scan.  It looks like a lima bean size spot, and we are having it biopsied on monday.  They are going to change my chemo treatment starting on wednesday of next week to Oxaliplatin and Xelodin??  Can anyone tell me if this is a hopeful way of clearing these spots??  I am way too young for this to be happening.  I turn 46 on October 5 year, mvbittner 9/23/2010
Case 8  My mom will be 55 on September 18th.My mom was just diagnosed with a distal tumor cholangiocarcinoma on 8/18/11. We do not see the oncologist until 9/6/11. They so far have placed a plastic stent to allow bile to drain properly but we do not have any other info yet.  She will be treated by Dr Kuvshinoff at Roswell Park Cancer Institute . My mom was already a type 2 diabetic prior to these issues but she was very well controlled. The brushings came back positive for malignant cells. The CT scan did show a tumor on the outside of the common bile duct.    hopefuldaughter 8/31/2011

Case 9 ( My 63 old mother ), in October 2010.  The were unable to remove it because a tumor was attached to the liver.  At first she was diagnosed with liver cancer.  After another month of tests she received the diagnosis of CC and had her gallbladder and 1/3 of her liver removed.  In January my mom began Gemzar and Xeloda.  We went in for a second opinion and the DR suggested that we break up the chemo treatments with radiation.  So after three treatments my mom did 30 days of radiation.  Her follow up CT scan showed that one tumor returned to her liver and one on her pelvis.  In June my mom started on a new chemo treatment which consists of oxaliplatin and leucovorin.   My 63 your old mother is currently on Gemzar and Cisplaitin (I think there might be something else in the mix, but I'm not sure) She was first on Gemzar and Xeloda, but that didn't work as two spots returned.  She was stage 3, but since it returned after her surgery she is now Stage 4.  Her last tumor marker was down to 10,000 from 11,000.-mn8/2011.

Case 10  my 58 year-old uncle who was diagnosed with cholangiocarcinoma mid June.  He had been experiencing pain and discomfort since September 2010 and has been going to doctors and specialists ever since.  he went to Princess Margaret in Toronto for his 2nd opinion.  Both doctors told him his cancer was inoperable and it was recommended by both doctors that he do radiation, BUT while the Princess Margaret surgeon recommended chemotherapy, the Juranvinski oncologist did not. cath 25 9/19/2011.

Case 11  since my 61 year old father now 65 was diagnosed with cc.His story started with itching and then the onset of jaundice.After a few weeks he finally went for ultrasound and bloodwork and ERCP showed blocked ducts.About 2-3 months later he saw a liver specialist at Vancouver General Hospital. tumour was extrahepatic and about the size of a walnut and near the portal vein.No mets was seen, the gallbladder was removed and lymph nodes were negative.Well he came home and we carried on with the same regimen of juice and supplements and its been nearly 4 years now.

Case 12.  my mom, 57yrs old, was diagnosed with a 6 cm tumour of the bile duct last July,2010 and had a partial hepatectomy with a Roux-en-Y procedure. There were clean margins all around, but they said there was one close margin. and waited till December 2010 to start Chemo IV Gemzar/Xeloda combo as suggested by the folks at Memorial Sloan- Kettering. Her PET-CT scan was done in the first week of December, which lit up pretty much everywhere...they told us it was post surgical and inflammatory in nature and nothing to worry about. She was doing fine on the chemo until her 5th week in, where she began to develop jaundice, itching, fever, and chills. They stopped it and treated her cholangitis where she spent another 6 weeks in hospital this past Feb. She was stented with a plastic stent in the bile duct and we were told she had a biliary stricture of unknown cause, as the brushings were negative, so they kept telling us she was cancer free, although her tumour markers were high and her CT scans were clear. Her follow up PET CT in March showed some progression with involvement of lymph nodes in the abdomen (called the paraortic nodes). But still they said it didn't look typical of the cancer coming back.Since she had four CT scans in the month of Feb alone that all showed her 'clear'. She just had her surgery 2 days ago, they found a 2cm by 2cm tumour (I am not sure yet of the exact location), but they said it was inoperable due to proximity to blood vessels.  Of course we're all devastated. my sweet mom is 5'2, and only 95 lbs, (43.2 kilos), . And now she is on TPN and jejunostomy feeding and they say she needs to gain weight before they going to irradiate her entire liver 10 by 10 cm field.-Kavita1 11/5/2010

Case 13  I am new to the list.  I was fortunate enough to have a resection and lymph node removal in August 2007, which were successful in themselves (Sloan-Kettering: exellent surgeon and care).  There was follow-up radiation and chemotherapy.  However, subsequently, I got tumors in both ovaries which were removed in July 2008, and now there are small metastases in another lymph node and in a lung.  We have started chemotherapy again, looking to halt or slow the disease, she has posted more recently and had Xeloda after her resection and recurrence - she had posted about good results with Xeloda.  CaroIE 12/16/2008

Case 14  (44 year old female) I was resected by Mayo Jax in Aug 2008 and was told I was cured and no chemo was necessary! There is no standard chemo protocol for CC and my oncologist there felt with 1" clear margins and no other signs of CC other than the primary tumor that I could just go home and hope there was no recurrence. A year later they found 6 very small tumors on the rt lobe and labeled it metastatic. Same oncologist said I could apply for a clinical trial but essentially told me I had 6 mos to live! Fast fwd to today I have had one round of Therasphere followed by a year of custom chemo cocktails. My tumor markers are in the normal range and the tumors themselves all showed signs of necrosis with all but 2 essentially dead. I admit its difficult to do chemo every other week (not to mention flying to NYC to do it) but I feel I am too young at 44 and believe I will buy enough time until there are other therapies which can totally eradicate the cancer. Howard Bruckner the chemo oncologist has some of the best survival rates among pancreatic and CC patients-he is nothing short of genius...floridamom9/22/2009

Case 15 My mother was diagnosed with cholangiocarcinoma last year.  At the time, she had no evidence of spread of the disease.  She underwent a partial hepatectomy with removal of the extrahepatic biliary system.  One of her surgical margins had some atypical cells, so she had radiation and chemotherapy with 5-FU and gemcitabine.  She completed chemo at the end of January, and her scan at that time didn't show any recurrence. her scan in May/11 showed a met in another part of the liver as well as ascites, which looked malignant.  She was started on xelota for palliative chemo, and she is going to get another scan in early July. She's in her early 60s and she's always been very healthy. heartdoc 5/17/11

Case 16 My brother, 33 years old, was diagnosed with intrahepatic cholangiocarcinomca on 4/13.  The cancer has metastasize in his liver and 2 lymphnodes, but no signs of cancer any other organs.  His liver has ~20 lesions and on both lobes, so resection is not an option.He began a gem + cis chemo treatment on 4/22. in his current condition, because of the ~20 lesions in both lobes of liver, transplantation has been ruled out by his doc.  Also, I thought if the cancer has metastatized to lymphnodes, transplant will not work because of the high risk of spreading back to the new liver. My brother was diagnosed with intrahepatic CC (with met to liver and 2 lymphnodes) on 4/13 and started gem/cis chemo on 4/22.After one round, his CA19-9 numbers are ~24000 vs. ~17000 before starting chemo.His doctor is switching him to GTX chemo very soon, after an immediate CT scan of the situation.Other than fatigue, he is actually feeling good during the last month of chemo treatment and "felt" the chemo is working.Ca_paul 5/16/2011

Case 17 My mother is 63, and was diagnosed on 5/20/09 (the day after I turned 40!) after a visit to the ER with a week-long stomach virus. Thinking it was diverticulitis, they ordered a CT scan, but instead discovered a 12cm x 9cm x 6cm tumor on the left lobe of her liver.  After MANY tests to rule out any other primary cancer source, including a PET scan, they confirmed it was not cancer metastasized to the liver but in fact CC. she was a candidate for surgery and had the left lobe of her liver removed on 7/2.  (I never knew the liver was the only organ that could regenerate.  How amazing.)  Her cancer was classified as intrahepatic cholangiocarcinoma, no lymph node involvement and no metastasis elsewhere.  The lobectomy had completely clean margins and it looks like they got every bit of the tumor.  (The tumor specimen was within 0.3cm of the surgical margin. She has three week cycles with Gemzar and Cisplatin on Day 1 and Day 8, office visit on Day 15, then start all over again.Kimmie-8/9/09

Case 18  My wife 48 was diagnosed in June 2005 and had half her liver removed ,severals surgeries to remove tumors and app, ovaries and other unneeded organs later ,she has 7 to 8 small nodules growing in the peritoneal cavity. Dr at u of penn. reluctant to operate. My wife has been on this chemo (Nexavar)a couple of different times and had very good success in keeping her 12 to 14 peritoneal implants at bay for a number of months. But  it found a way to start growing again; more than half of her liver removed along w/ other parts only to come back 7 months later in pelvic region.  several surgeries, hospitals and too many protocols to list later she is still giving it hell almost 6 yrs later.  she now has at least 13 measurable tumors in her torso and pelvic region and is to start  Tarceva .  my wife Sue was diagnosed in june 2005 , had more than half her liver removed only to suffer reoccurence 7 months later   3  surgeries and 9 different courses of treatment later  here we are just back from a 4 day stay at U of Pennc cancer has progressed to peritoneum  along with pelvic area and kidneys  along w clusters near or on liver.  She had her kidney stented only to suffer from much pain  and bleeding.How she manages on a daily basis is beyond me , her illness has progressed to she has to have fluid drained from her abdomen  weekly,  robjbeave11/15/2010

Case19  Diagnosed April 1, 2009 with extra hepatic bile duct cancer. Had a more permanent stent placed in bile duct to alleviate the obstruction. In May, 2009, 7 new tumors on liver disqualified me for whipple procedure. Started combo of Xeloda, Gemcitabine, Taxatere in June, 2009. It shrunk 6 tumors to cellular level and stayed stable until 4 weeks ago. The 7th tumor has grown and my Ca 19-9 has elevated. Started new treatment of Oxaliplatin & Xeloda 3 weeks ago. During this time I have felt pretty good most of the time - feel very lucky. . I am treated at Johns Hopkins with the same protocol as pancreatic cancer since there is no separate protocol for bile duct. jeand 11/4/2010.

Case 20  I was just diagnosed on Tuesday, October 26th. I have a non-resectable tumor that surrounds my hepatic vein and hepatic artery (10cm).  Tomorrow I will receive a phone call from a Dr. Hertl at U of Mass-he may operate on me (I seriously doubt it). I am completely devastated and told I have 6 mos. to 1 year to live. I have no jaundice and of course have had very little symptoms of cholangiocarcinoma. My CEA is normal. My husband is also devastated. I had radiation in the hopes of shrinking my tumore because it is unresectable. I went everyday for 4 week I had no nausea becuase I took compazine before I had the treatment. I just became tired because the radition is cumulative. I was diagnosed Stage III B because of the size of my tumor.I saw the radiation oncologist once a week during radiation..I have had 6 treatments of gem/cis and 4 weeks of radiation with xeloda.I was suppose to have cyberknife but just did not feel comforable.I made an appt. with Dr. Pawlins at Johns Hopkins (he said no surgery). I then had a chemoembolization treatment by Dr. Geshwin (I had a very long recovery with a hospitalization at Christiana in Delaware for a high bilirubin).I had one MRI at Hopkins that showed some necrosis of the tumor. The next follow up appt. for an MRI is June21st. I just made an appt. at Mayo Clinic in Rochester with a Dr. Queveda in medical oncology.  jladams 10/31/2010

Case 21  I had my surgery at the Cleveland Clinic in Ohio.  I did not receive adjuvant chemo because, at the time, my doctors felt there was not enough evidence to support chemo would prevent a recurrence.  I believe there is now more evidence supporting adjuvant chemo. I'm still dealing with bile duct issues from my surgery 2 years ago.betsy 9/29/2009

Case 22  I have been in Stage 4 for about 2 1/2 years now with mets to the lungs.  The liver has been ok-ish for a while but I'm seeing some negative signs that all is not well in that area.  But since there is nothing I can do about it, I'm just letting it go.I've been through about a dozen or so different chemo regimens, until my oncologist ran out of tools in his toolbox.  I am currently under hospice care.  Everyone is different with hospice care.  For me, it means that I don't have chemo anymore, and I have a nurse, a social worker, and a massage therapist who visit me every other week.  All meds go through the nurse.  It's been working out ok.  One thing that I need to remember is that I am ill.  I feel normal and do things, like weeding my backyard, then I collapse from exhaustion.  I need to learn to conserve my energy and be on a more even keel.  Lisa 7/8/2007
Case 23  My diagnosis was January 2010 and chemo failed but a direct chemoembolization to my liver tumor did suppress growth. I suspect my liver tumor is growing again and will have a CT today but I feel well and am actively participating in my art gallery and shows. My faith carries me through. Just a brief update, a bone scan revealed a bright spot on the greater trochanter of my right hip. A visit to the radiation oncologist showed that the tumor involved more, most of the neck was tumor with just a thin layer of bone with a hole through it. Tomorrow I go for surgery to insert a screw and plate to stabilize my hip enough so that I can go for radiation.  Charlea9/10/2010

Case 24  Myself, I've had surgeries, radiation, and several types of chemotherapy.  I have fought this monster for over 8 years and still pushing.  It comes down to an individual choice of quality versus quanity of life.  Some can deal with side effects better than others.  I believe in getting second opinions when it comes to surgery as if resection /removal of the cancer can be provided considerable more time is the outcome. All the chemo and radiation have done what they can . I am on at home hospice now. My wife was devastaed when she heard the final statement of nothing else left to try.  This is Jeff's Daughter. This video was created by my family in February and it was played at my dad's Memorial Service after his passing on May 6th,2009. JeffG 1/16/2006

Case 25  chemo treatments for an elderly person (84 years old).  After finishing his radation treatments in Sept, Dad decided to wait for his next CT scan before deciding on chemo.  He has been doing really well & looking great. He had his CT scan about 2 weeks ago. We saw the surgeon the other day & his scan came back clear.  The term he uses was "clinically cancer free".  He did give us a disclaimer that only means nothing has shown up on any tests,-- onlygirl 5/15/2009
Casen 26  I am 46 years old, I was diagnosed with Stage Four Intra Hepatic CC with a tumor size 0f 10 cmx10cm inside the liver.I see Dr. Javle at MD Anderson in Houston every three months for PET scans and to update my progress. I receive Gemzar / Cisplatin every 14 days. I also take 150 mg of Tarceva daily. I had one lymph node that was hot and some very small spots (so small they could not be measured)in the lungs that are all gone now after the chemo. I feel like I am 90% perfectly fine besides being tired after chemo. I walk 2-3 miles per day and the only problems so far (two months ago) had blood clots in right arm(totally blocked).--Patty in Illinois 8/3/2011.

Case 27 I was diagnosed July 31, 2008 and finally am "normal'. It has been a long 3 years,(the last rites tiwce) but we made it and life is sooo good! My only sympton was itching and no jaundice, (just a great tan!!). My bioposy also was negative but my doctor knew that is twas wrong and immediately put me in Dr. William Chapman (he takes phone calls) care, at Barnes-Jewish Hospital in St. Louis MO. I am alive because of these doctors. Make sure transplant is discussed and if it not an option,--jathy 9/9/2010

Case 28  my 69 year old mother was diagnosed. She has extrahepatic CC and the only reason why it was found was by pure accident when she started getting stomach pains. She is in Stage 3 but more likely Stage 4. We got 3 different opinions -The surgeon told us it was inoperable at the present time. She will begin chemotherapy next Monday. The doctors at Johns Hopkins Liver Center were amazing. They were kind but straightforward and confident in trying to help. My mom has none of the symptoms except that she tires very easily. No jaundice or itching.We saw Dr. Pawlik and Dr. Cosgrove at JH. Both were great. Today we met with a new oncologist in which mom will start the standard "best chemo mix" - Cisplatin and Gemo on a 21 day cycle and then reassess after 3 cycles. She will get her first treatment this week. They said that this mix gave a prognosis of 11 months (average),--janetinva 8/24/2011.

CASE 29 My mom, age 61, was diagnosed with CC in March 2011.  She had a large mass 17cmX14cmX12cm. We were first shocked but then addressed the mass with chemoembolization once the words "not a surgical candidate," were told to us multiple times.  She has had 2 chemoembolizations with doxirubicin and her MRI now shows a lot of central mass necrosis, but still some viable tumor.  We are now in the process of being referred to MD Anderson for further evaluation. --FAITHINHEALING 8/30/2011

Case 30 my husband was diagnosed a little over 3 years ago.   His first symptom was a pain in his right side. CT scan  found  he had a huge mass in his liver. he was operated and  ended up removing 70% of his liver, right kidney that was not functioning, part of colon, gallbladder and part of stomach.   When he went for his 3-month scans, they noticed some spots on the part of liver that wasn't removed. They decided to wait until his next 3-month scans.  multiple tumors had developed.   After going through 10 treatments of chemo, the doctor gave him a break.   When scans showed that the tumors were growing, chemo was restarted.  He made it through 6 treatments before having a very bad reaction to the chemo. he doctor stopped treatment.He began treatment again on January 4, 2011 with a different regiment of drugs. Treatment was stopped on May 23rd as he had started experiencing some bleeding and the doctor felt he needed another break.  he last chemo he was on was cisplatin, gemcitabine and avastin.   He tolerated this well with the exception of being very tired.  His white counts and platelets were very low so he usually had to get a shot before he could get his next treatment.  When he was diagnosed, he was already Stage 4,  After the surgery (the mass was the size of a softball) and the resulting multiple tumors, the oncologist decided to treat him with the drugs they use to treat metastatic colon cancer.   When he had that adverse reaction, that's when they switched to the cisplatin/gemcitabine/avastin. John had 11 cycles of the chemo and 9 of the avastin since January 4th.  He stopped treatment on May 23rd as the doctor felt he needed a break. They are going to put him back on the gemzar and cisplatin.   John seems to be getting more tired each day, yet he continues to do as much as he can. We live in a small city in Virginia.  We are not far from the University of Virginia Hospital which is where John had his surgery.We have been married for almost 36 years.---peggy 8/14/2011
Case 31 My abuela just got her official bile duct cancer diagnosis yesterday!  She is 81 and already has some health concerns. she has opted to put in a metal stint and avoid treatment.  She is already diabetic and very weak.  She is interested in alternative medicine but is leaning away from radiation and chemo at her age and health.--SENAIDA9/1/2011.

Case 32   My mom is 63 (64 in October)she was diagnosed with cholangiocarcinoma and they told her she was in stage 4.The first doctor told her that if chemo works (which would have a 40% chance of working), she would live "a couple months to a year". If it doesn't work, less than "a couple months".--D4B182 8/26/2011.
Case 33 My 74-year old father definitely has cancer, who had CUP  diagnosis.in May,2011.  they are having a difficult time determining what the tissue of origin is.  His oncologist at MD Anderson used the following factors in diagnosing cholangiocarcinoma: 1. Pain in upper right quadrant and corresponding back pain;2.  retroperitoneal mass which biopsy showed adenocarcinoma likely from pancreas, biliary, stomach, colon, prostate, lungs3.  Stains showed CK20 neg and CK7 positive; plus tumor markers normal except for elevated CA19-94.  Normal PSA - ruled out metastatic disease from previously diagnosed and treated prostate cancer (with radiation)5.  CT scan w/ contrast showed suspicious tissue and slight dilatation of duct in segment VII of liver 6.  Mass which includes positive lymph nodes immediately adjacent to suspicious tissue mass; also positive para aortic, mesenteric lymph nodes 7.  appears to be no growth into any other organs (i.e., pancreas, abd aorta, )My dad has not lost weight, has a slightly reduced appetite; and the pain in his abdomen only started in December 2010.  He has been taking pain meds for a month now and he has to take more and more to control the pain.  Dad will start cistiplatin and gemzar this week; one infusion every 14 days; then back to MDA in eight weeks to determine if the lymph nodes are responding.SMV). the doctor staged him as IV.--kamnbelle 5/2011.

Case 34 my Mother is 73 years old. My Mother was diagnosis with cc in January.   She has had 3 CT scans and has gone through two different types of chemo therapies.  First set was 7 days pills, 7 days off, three sets (xeloda).  Nothing changed much.  The next set was once a week chemo (gemzar), followed-up with a shot the next day (neulasta). Her side effects from chemo have been three things, tried, cold sensitations and swelling of the legs.  But she is doing great.  I am so proud of her.  What a trooper.  She just keeps on smiling and laughing at this situation she is in.  She just had a MRI done, which show no growth but no change in sizes either. My Mother's  Oncology doctors are Dr. Michael Gu, M.D., specialize in internal medicine and oncology.  Dr. Eddy C. Hsueh, M.D.,  specialize in surgical oncology and chief of the division of general surgery at Saint Louis University School of Medicine. Both doctors are at St. Anthony's Medical Center - Cancer Care Center, St. Louis, MO--christine4 7/3/2011.
Case 35  my mother, age 63, My mother was diagnosed with a large liver mass on the left lobe on May 20,2009, . it was adenocarcinoma consistent with metastasized cancer, but every possible kind of primary site was ruled out . On July 2. They removed the entire tumor, the main one being 12cm x 9 cm x 6.5cm, with multiple small tumors ranging from 0.2 to 1.5cm.  The margins were all negative and they didn't see evidence of any right lobe involvement, and the lymph nodes removed showed no signs of malignancy.  They staged her T3N0MX. She tolerated the surgery really well .  She schedule her for a port this week and begin chemo ASAP. chemo started in August (gemzar and cisplatin) for 6 cycles. Gem/Cis through December. Scans and bloodwork were clear and she was deemed in remission.  We just found out last week it's returned in the form of smaller masses throughout the liver. No apparent mets anywhere .We were happy for the first 6 months of 2010, March bloodwork was great, even the CA 19-9.  June bloodwork showed elevated CA 19-9, and the CT scan confirmed several smaller tumors throughout both lobes of her liver.  Chest x-ray was clear.So we met with her surgeon on 6/29,  that surgery is not an option.  He talked about possible palliative chemo, but to weigh the quality vs. quantity.  He said she's probably looking at 6 months, maybe a little more with chemo. She will have a port placed on Friday and start chemo next week (hopefully).  The will just do gemcitabine this time (last time it was that and cisplatin) for 2-3 cycles, check the how the tumors respond with a scan, then move ahead with Therasphere.I'm really hoping she handles the gem ok this time.  She had nausea and fatigue, but it really did a number on her white blood count.  They were giving her neupogen,  Plus it gave her flu-like achey bones  Her liver functions were always normal (amazingly) and the highest her CA19-9 ever went was 93.  In June CA19-9 was 97, last week it was 525, and for the first time both AST and ALT were high at 118 and 111, bilirubin 0.9.  This week liver functions were 268 and 303, and bilirubin high for the first time at 1.6.The have decided to stop treatment.  She is very weak, partly from being dehydrated and not eating enough.  She'll be getting IV fluids today, and has been really good about eating the last 24 hours, and drinking 1-2 Boosts a day.  She is overweight, which makes it hard helping her up to go to the bathroom.  She has a walker and now a wheelchair, and we've been using the bedside commode. Her oncologist said he'd normally recommend hospice now, Although her last bloodwork on 8/30 showed a continuing increase in liver functions, bilirubin and CA19-9, there are no signs of liver failure.  Her skin is a beautiful color still (and at 64 still soft and smooth and barely any wrinkles), her eyes are as white as can be.  We alternate haldol, lorazepam and oxycodone for the agitation and lower back pain (pre-existing condition for years).   she was admitted to home hospice on 8/13.  My dear sweet mother Bonnie completed her journey on this earth yesterday (9/26/2010)afternoon at 3:30pm. --kimmie 8/9/2009 .

Case 36 My name is Pam. I have an interesting story. On april 15 I was diagnosed with ovarian cancer. On May 2, I had a hysterectomy. 2 weeks later, they told me I did not have ovarian cancer. My surgeon had removed something from my liver and it was what they say is a stage 4 bile duct cancer. I have had several scans since then and nothing has shown up on the scans. They took the cholangiocarcinoma out, and have not found the primary site yet. Carcinoma of the Unknown Primary (CUP). They have done PET scans, Ct scans and MRI scans. The CT scans and MRI scans were clear. We have not received any results from the PET scan yet. I just had it done Tuesday. We have an appointment Thursday. I have received really good care from OSU. We got a second opinion about the cholangiocarcinoma from Johns Hopkins and they agree with OSU. I had not been experiencing any symptoms except symptoms which were consistent with endometriosis or ovarian cancer. Once the cyst was gone, I really have not been experiencing any symptoms.I went to the oncologist Thursday. The PET scans revealed no cancer. As of this time, my oncologist has declared me in remission.I go back in three months unless I experience any symptoms. I am so glad about this diagnosis. So glad. I can't figure out how a Stage 4 carcinoma gets discovered like that but I am really glad it did. OSU is a great medical center. --pgochemour68  8/24/2011

Case 37 My dad was diagnosed with CC in January 2011 and is doing remarkably well considering.  He started out in a local hospital and did chemo til June (gemzar and cisplatin).  Since then he went to NYC to get a second opinion and look for other treatment options.  He has been deemed inoperable and also not a candidate for chemoembolization. We are currently at a standstill and looking into clinical trials and any other options he may qualify for.  We have been to Dr. Popa at Cornell and are now in the process of forwarding records to Sloan for yet another opinion.  We want him to be here as long as possible and have a good quality of life and hoping for a miracle. My Dad's attitude and outlook is much better than mine so for that I am grateful, I just want the ball to get rolling and see something happen!! He was diagnosed with Stage IV inoperable CC and is surprisingly doing well considering the diagnosis.  We are feeling a bit discouraged and feel at standstill.  He has had several round of chemo (gemzar and cisplatin) and since then (ended almost 2 mos) ago nothing.  We don't know what our next step should be.  He is not a candidate for surgery or chemoembolization.  We are looking into trials and multiple opinions and trying to stay positive.   Kate_Eits 8/24/2011

Case 38 My husband Tom was diagnosed at age 61, went through a successful resection in June 2008, did not have chemo or radiation.  18 months later he presented with Jaundice and a new tumor was discovered.  That one was inoperable.  After 4 different oponions we decided to go with radiation then chemo.  He has an external drain which drains off the excess bile.  His first onconologist told him he had 6 months and radiation and chemo would not help.  I did not accept that and we moved forward.  Since hearing those awful words in Nov '09, my husband is still here some 20+ months later. My husband Tom has CC, he was diagnosed 3 1/2 years ago.  He was able to have a successful liver resection, they removed the entire left lobe of the liver and part of the right lobe.  About 85 %.  They would not do chemo or radiation because they had clear margins.  18 months later he started turning yellow.  There was a new tumor in his right remaining bile duct.  Currently he has a external drain bag to drain off the bile that is not getting into his intestinal tract. ---mlepp 0416 1/8/2010.

Case 39 I am 48 and was diagnosed in March 2011 with Stage 4A CC in the liver. It was found because I had a gall stone attack and the tumor was seen in an ultrasound. It has taken 2 of the hepatic arteries and the tumor surround(ed?) my vena cava. Not sure how much it surrounds the vena cava anymore, after today's wonderful news. (don't worry, this really is a good news story: just has a few bumps in the road at the beginning). In April I had a liver infusion pump surgically implanted into my abdomen and the lymph nodes cleaned out around the liver. Unfortunately the surgeon didn't get all the affected lymph nodes, nor did the pump work. Very discouraging. We tried 2 embolizations that failed. So we went on to systemic chemo, as the tumor and affected lymph nodes weren't getting any treatment. Before I could start chemo, I had a blood infection and ended up in the hospital. I was really getting discouraged but I am a fighter and I hate to lose, so I kept plugging away. I WAS losing faith, tho, because I was getting no good news.So here's the good news: my tumor started at 5.4x4.3cm. After 4 chemo treatments (Gemzar/Oxliplatin) my tumor was 4.4x3.3cm. That was a CT scan on July 25th. Since then I have only had 1 systemic chemo treatment. I had the 3rd embolization on Thursday Aug. 25th. It was finally "mostly" successful! The pump study showed a slight "fluttery" leak but my oncologist doesn't seem to be too worried about it.Today I went into my onc's and had another CT scan. Amazingly enough, even though I've only had 1 chemo treatment since the last CT scan, my tumor has shrunk again. It is now 4.0x2.4cm. And the lymph nodes aren't even mentioned this time. I am now getting the chemo thru the pump, which is supposed to have little to no side effects, and am hoping to hear the words "resection" from my surgeon soon! I was hoping to hear that word by this time next year, --kris00j 4/6/2011

Case 40 I

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

2 (edited by CM Wed, 07 Sep 2011 14:45:19)

Re: A Glance of Cases of This CC Web Site for Newly Diagnosis Patients

Case 53: My husband 41 years was diagnosed with stage IV cholangiocarcinoma May 2010 with mets in both lobes of liver, (rendering it unsuitable for surgery), ribs, spine and pelvis.
His only symptoms prior was painless jaundice for a week or so.
He had a metal stent put in place to drain the bile and started on GEM/CIS July-November 2010- 6 cycles of 3 weeks in total.
The chemo was well tolerated initially however half way through blood counts were suffering and the dose was reduced- frequent infections requiring heavy antibioitics.
He was doing okay from Dec- April, started on dexamethasone for a boost to energy & appetite- CT scans showed "stability" with tumours in liver.
Continued feeling okay in large- but legs were weaker early in June, (prior to this he would have walked every morning)

Scan results in 13th June 2011 showed the disease was active again- liver function was not fit for chemo at present- doubled steroids as a last ditch attempt.

My darling husband passed away 22nd June 2011 after a very dramamtic and short deterioration, within 56 hours.

I have no doubt that he received the very best medical care & treatment known at present. Chemo for us was always palliative although we couldn't acknowledge it.
We reside in UK

Re: A Glance of Cases of This CC Web Site for Newly Diagnosis Patients

Percy, you have established a great thread here.   I hope for it to continue to grow and grow.


Re: A Glance of Cases of This CC Web Site for Newly Diagnosis Patients

Hi Percy,

This is a great idea for a thread. Many thanks to you for taking the time to start this off. I will talk about my dad's experiences. But for those who read this post, please be aware that some of this is *SENSITIVE* material. If you do not want to hear about this then please do not read this post anymore.

Case 54: My dad, diagnosed in Autumn 2008 aged 64. First symptom was the jaundice, yellowing of the skin and eyes, then the itching. No symptoms at all prior to these that lead him to suspect anyting at all was wrong. General health before diagnosis very good, slightly overweight but very fit. Non smoker all his life and alcohol consumption also minimal all of his life as well. GP referred him to Ninewells in Dundee, admitted due to the jaundice and had tests, CT, MRI and ultrasound and over 3 weeks later was diagnosed with inoperable CC. Deemed inoperable due to location of tumour being too close to the portal vein and radiation ruled out from diagnosis as the GI specilaist thought his liver would not cope well with it.

Treatment options offered were chemo or PDT. Dad wanted quality of life so chose PDT over the chemo but had the option of doing chemo at a later date if possible. He liked the fact that the side effects of PDT would be less than the chemo. Also had a metal stent inserted to help relieve the jaundice and this worked. Then had the PDT. Photofrin was used as the light sensitising agent and this was given 2 days before the PDT was done. After PDT, spent 6 weeks in a single hospital room with no lights on in room. My dad was alos prescribed Prozac at this point. When discharged from hopsital, dad had to wear articicially darkened glasses, wide brimmed hat and gloves when outside for the first 6 weeks. Then tried to test his skin sensitivity to natural light by going outside with a paper bag on his hand with a hole cut in the bag. After 10 minutes outside his exposed skin started to go red so Photofrin still in his body and he had to keep wearing gloves outside for another 2 weeks. Then repeated test and skin not going red so could take gloves off, 2 weeks after that could take the hat off then another 2 weeks after that could go outside with no darkened glasses.

Follow up CT scan after PDT showed that treatment had not worked as well as hoped, but had stopped the tumour growing. Dad had slight pains and this was managed with paracetamol 3 times a day then this was changed to Solpadols 3 times each day. Lactulose twice a day every day also used to help with bowel movements, Movicol also tried but was not working well so stuck with Lactulose. Spring 2009 the jaundice came back then suddenly disappeared as quickly as it came. Ct scan showed no more progression at this time and doctors very happy with how dad was doing here although they couldn't explain why the jaundice came back then disappeared again.

Late summer/early autumn pain starts to increase slightly so Solpadols increased to 4 times per day and this helps. Nausea also starts in a small way so meds given for this. As the weeks go on the nausea increases so the meds are changed, as are the combinations of the meds. Some work better than others and Buccastem which will dissolve under the tongue is prescribed as this does not need to be swallowed and kept down for it to work. Fatigue is also a big issue and dad is taking many naps each day, but this has been going on for many months now.

Autumn 2009 dad has another CT scan and this time the results show that the tumour is growing quite a lot. Still at this point he has no jaundice and GI Specialist refers dad to an oncologist to see about trying chemo. A few days before meeting with the onc the jaundice comes back in dads eyes. Oncologist sees this, discusses everything with us and rules out chemo now. Reason being that the chemo would not be able to be flushed out of dads body due to the blockage in the bile duct.

Nausea now starts to get much worse and dads appetite declines a lot. Fluid is building up in dads ankles, legs and abdomen. Meds tried for this which don't work and they talk of attempting to drain dads abdomen. Dad is going to a cancer day car centre twice a week and has been doing so for months now, and he loves going there. The centre is attatched to a hospice and because dads nausea is getting so bad they take him into the hospice to try and deal with the nausea. This is in November 2009. They try to change meds again and change the way they give the meds. Now dad is on a syringe driver instead of taking meds orally and they give him Haloperidol as well. This helps a lot with his agitation. Into December, most of dads meds are removed and now what they are giving him meds only to deal with his pain, nausea and to help him sleep if he wants. They try to drain the fluid from his abdomen but they can't do that. All they can do now is to keep dad as comfortable and pain free as they can, and they do an outstanding job in keeping dad very comfortable. They also keep his pain at bay with pain injections when needed in addition to what he has through the syringe driver. On the morning of the 9th of December we are called up to the hospice immediately and dad has slipped into a sleep. I stay with him all day and he is very comfortable and sleeps throughout this time. My dad passes away early in the morning on the 10th December 2009.

Thank you again Percy for starting this thread, I hope that it will be useful to many. I don't know if what i have posted is what you are looking for on this thread. I guess that I have went overboard with posting details about my dads fight, but it is hard to sum things up in just a few lines. I've probably missed some things out, but I hope this is okay.

My best wishes to you and to everyone here,


Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: A Glance of Cases of This CC Web Site for Newly Diagnosis Patients

I agree with Gavin.  This thread is important.

Thanks so much,


Re: A Glance of Cases of This CC Web Site for Newly Diagnosis Patients

I just add 27 more cases and try to group this part 1 of 50 cases with part 3 so it will be appear together.Thanks and God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.