CancerCompass message board discussion started by Mark n on 1/24/2006 http://www.cancercompass.com/message-board/message/all,4226,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ After being diagnosed with chalangiocarcinoma who are the long term survivors. How many years have you been cancer free and has anyone been told they have been cured of this cancer? I know it's not a very common cancer but I hear very little about positive treatment or long term survivors...have you? Mark n Tue, 24 Jan 2006 00:00:00 GMT I have also thought that it would be a good idea to get feedback from those who are able to live with this disease. It makes us more hopeful about our own situation. I had a post on the Confused thread on this website, from someone whose 74 year old mother was disgnosed with cc in April 2001 and is still around and well, after nearly five years. She had chemo and radiation treatment. I have often thought that the chemo trials don't necessarily portray an accurate picture of the true course of the disease, because those who do not have chemo are not included and people have treatments with different degrees of severtity of the illness. Drav62 Fri, 27 Jan 2006 00:00:00 GMT hi, i agree with you that it would be great to hear from some long term survivors - my dad is 61 diagnosed july 05 (but had symptoms from jan 05), had resection oct 05 and has been told that he does not need chemo, the surgeon who operated uses an aggressive technique and has told us that he has done the same op on other pts who have gone on to survive another 10 yrs, or to be cured altogether. We never thought my dad would be able to have a resection because he had one failed op july 05 were they told us that the tumor could not be removed. I believe that surgery is the best option, however i have come across people on other sites who have been held stable for some yrs on chemo. I think that it is vital to get 2nd,3rd even 4 opinions and never give up - the odds seem terrifying, drs have been proved wrong many times before.. Kind Regards jules Jules1970 Tue, 31 Jan 2006 00:00:00 GMT I was diagnosed with CC in December, 2003. At first it was thought that I had a recurrence of colon cancer, diagnosed in September, 2001. I was referred to Sloan Kettering for a second opinion. Surgeon at Sloan was unsure of the colon cancer recurrence, but was not sure what exactly this was. He operated on 12/9/2003, and found was told by Sloan's lab that it was a neuroendocrine tumor. With that news, he bisected my liver and removed several questionable lymph nodes. Further testing revealed CC, intra-hepatic. He basically told us that if it were him with this diagnosis, he would not opt for chemo and just enjoy life. Not willing to give up, he referred me to an oncologist who gave even less hope. She put me on a regimen of Gemzar and Xeloda. After 7 months, I did not want anymore treatments. Quality vs quantity came into play. Well, since then I have had no treatments but go for scans and blood work every 3 to 4 months. There has been no sign of the disease since. Of course I worry about it returning all the time, but go on with a healthy and normal life. Dette1957 Mon, 03 Apr 2006 00:00:00 GMT I am reciting some of my experiences here - they are not meant to be boastful, rather I would like to inspire as many people who are suffering as possible - I would like to tell them - you can live normally! My best wishes to all, their families and friends! This is a long message so please do bear with me! (I don't what my fate is in the near future, but death has never frigthened me. You can also read this on the Bile Duct Cancer Message Board on this website. The discussion topic is Whipple's Procedure and after.) The stage grouping for my tumor was IVA (T3N0M0) I have been living in Bangalore, India since July 1999, before this I ran a manufacturing plant in Mumbai (Bombay). I am a father of three beautiful kids- a son (age 20) who's doing Engineering - Computer Science, a daughter (age17) who's doing a pre-university science course and a school going younger son (age 10), and am very much in love with my wife of 25 years, we'll celebrate our Silver Jubilee anniversary shortly. On August 30, 2002, I was diagnosed with cholangiocarcinoma - lower end common bile duct - by an MRI scan, I was 43 years old then (I married young), a malignant tumor was present at the joint between the head of my pancreas and the common bile duct ( CBD). This was further complicated by a scratch in my pancreas caused during ERCP on September 2, 2002. Though I have a high threshold of pain, the ERCP injury was almost intolerable and I had to be kept under sedation until surgery which took place on September 7, 2002. -. Whipple's procedure. My gall bladder, omentum, part of my stomach, part of my pancreas (about 1/3rd) and the bile duct were removed. The margins were all clear. Right from September 1, 2002, when I had my last meal for quite some time, I was not fed anything at all, not even water. I was fed intravenously (I digress). Reconstruction was carried out. I was in the operation theater and under anesthesia for almost 11 and ½ hours. Everything was fine until September 15, 2002, when excessive fluids started leaking out of the two drain holes made on both side of my abdomen. On that day in the morning I was fed with a low fiber diet with a tube connected directly to my stomach. I was very sick. My bowels gave away suddenly, and I lost control over my bladder. I started shivering violently and then suddenly felt very hot, I started sweating profusely and breathing was difficult even with an oxygen mask which had not been removed after surgery. Though in distress, my mind was very clear and lucid. I could see the expressions on the hospital staff and the doctors' faces and understood that any second could be my last. That did not worry me or scare me, what worried me was my family's fate after me, though after all the pain, death was not an option that I wanted to reject outright. I realized how serious I was, when experts advised that I be shifted to another hospital with better facilities a few miles away, and the doctors attending upon me, including the surgeon who'd operated on me and the anesthetist personally lifted me up and put me on a gurney to wheel me to the ambulance, rather than wait for the ward boys to come in. I remember the doctors periodically checking upon me by asking how I felt during the ambulance ride. I knew they wanted to know the level of my consciousness. I remember feeling the ambulance speeding and constant sound of the siren - not klaxon. I was quickly taken for an MRI scan and later my gurney with me on it was kept outside the hospital room, in a very safe and sterile place until the fate of my scan and probably, the doctors wanted to see if I would survive before admitting me into the hospital, Probably, if I know the law correctly, if I'd died within 24 hours of admission to a hospital a Post Mortem procedure would be mandatory. I understood all this while I was waiting to be admitted to the better hospital, as I said, my mind was clear and lucid all throughout, I was very much aware of my surroundings, the people, the sounds and noises. At that time I remember feeling quite pleasant, not hot at all and there seemed to be cool breeze wafting around me cooling me up. I was finally taken to ICU after about an hour; the MRI scan showed that the leakages were not as serious as had seemed earlier. Slowly I recovered, though there were two or three serious hiccups - one I remember dreaming that my gurney was being pushed faster and faster an then suddenly it had stopped in a great green field with a lot of sunflowers and then there was a bright light, towards which I was walking, when suddenly I woke up to the doctors repeatedly yelling out my name - My heart had stopped, I was later told. I think the doctors could not try the conventional re-sustication methods because of the extensive surgery on my abdomen and part of my chest. I remember dreaming when I could sleep and some of the dreams are quite vividly etched in my mind. Another bad hiccup was when my lungs got immersed in bodily fluids and the doctors made me bend forward and withdrew more than a liter of fluids each time with a syringe they poked into my back. Believe me, it's one of the most difficult things that I had to do, bend forward with my torso cut and recently stitched up, so that the doctor could draw the fluids out. Soon I was on road to recovery and on 25th September 2002, I was shifted first to a shared room and later to a separate room, once it was available. On the same day, I started walking with support, my first steps after I was admitted to the new hospital. Soon by the first week of October 2002, I was walking without support and could manage all of around 100 meters at a stretch (I assume this was the distance, since I was a medium distance runner - 1500 m and 5000m and have been a mountaineer) in my youth and had taken part in district level competitions. I spent the better part of the day and night watching English movies on the TV, at night I had to keep the volume low so that my wife who stayed in the room with me could sleep. Also starting the first week of October, I was allowed to have a liquid diet - the first mouthful that entered my mouth after almost a month- the thought was terrifying, and I was afraid even to swallow. I was discharged from hospital on October 7, 2002 and had my first solid morsel of food a couple of day later. Subsequent to this I was advised rest for almost two months, though; my doctor did allow me to start driving my car on November 8, 2002. Bad things happen in pairs, a few days before I was diagnosed with my ailment, I lost all my capital due to bad decisions, so while resting, I decided to study and pass exams to enable me to be an insurance advisor. I stood first in my division and the second overall among the many hundreds who had appeared for the exam, the girl who stood first bettered me by one mark. Later I appeared for another exam to enable me to sell mutual funds, here too I did far better than most of the other candidates, and this was a course I studied on my own, without approaching any institution for guidance. Over a period of time I have started doing well in both these businesses, and have added another income source -that of writing. I write for an online television portal and a business magazine in Bangalore and will shortly start writing for another real-estate magazine also based in Bangalore. (Do pardon the mistakes in the language and spellings, I hate to spell-check and can type only by the hunt and peck method) I have not had to undergo chemo or radiotherapy so far. Every six months I get myself checked up - ultrasound scan and blood tests. So far alls' been well and I am optimistic. The doc says that now the chances for a recurrence are as much as those of any other human's. (Is this correct?) On the physical front, my libido has increased a lot and I have no complaints on the sexual front. I have driven down to Mumbai (my birth town) and back. I have trekked in a Himalayan town, in one day I climbed up and down steep slopes totaling around 30 kms (18 miles) and except for fatigue during that first night after the trek and a little bit of pain in my calf muscles for couple of days afterwards was no worse off. My wife who came with me could only walk half the journey, (the rest on horseback, while I walked). I now sometimes end up working for almost 14 hours a day, though the energy level are low sometimes, I still force myself to work - I used to do this when I ran the factory in Mumbai. I think that the following have greatly contributed to my recovery::- My family, this includes my parents who left everything in Mumbai and lived with me during my illness, most importantly - my wife who never shed a tear in my presence-she always has been the strong one and repeatedly kept on assuring me that things would be fine - If she'd shed even a tear, I think that would have been the end of me - I wouldn't be able to take it and would not be writing this, though now after more than three years, some relations have revealed that they had seen her cry on the sly, but I never did at that time and neither did my kids. My Surgeon and my anesthetist (who happens to be my wife's brother - mine was the first close relation surgery he has taken part in) are also the most wonderful people who are responsible for my survival. The older kids my older son and daughter, though school going themselves took good care of each other and their younger brother who was just six then - God bless them, were another major factor that wanted me to live. My waist and a part of my abdomen are still numb, sometimes I feel pins and needles around the scar area of my surgery and my lower back. I do feel gassed up quite often and then my surgery scars expand and I feel like I am wearing a tight band around my waist. Recently, I have noticed that when I eat lunch or dinner outside, the bile juices rise up and I can taste them, but I've never puked since surgery, though sometimes the sensation to vomit does happen. I eat more frequently and a larger amount of food than I used to, otherwise I start feeling discomfort around my stomach and waist area. (Is this normal?). I don't take any medication at all, not even insulin, since my residual pancreas are doing the job so far, except for one vitamin B-complex capsule every night after dinner, and a tablet for hypertension when I wake up in the morning which I was re-diagnosed with in Aug 2005 and medication re-commenced since then. I am on a normal diet (I have been a vegetarian since the past twenty years or more and am a teetotaler). I do try to control the oil (fried stuff) and the spices. I also now need reading glasses, but my doctors assure me that this is age related and normal for persons in their mid to late forties. I also sleep less than I used to and I walk around 3 to 5 kms (1.8 to 3 miles) practically everyday. Post surgery, I had gone down from 93 kgs (205lbs) to about 69 kgs (152 lbs) when I was discharged from hospital. I am now overweight at about 83kgs (190 lbs) at 178 cms height (5'10") Ajaygaba Mon, 17 Apr 2006 00:00:00 GMT Hi Jules, this is Ritesh and my dad is in the same situation. He has been told that he is not a candidate for a surgery. Can you pleaseee reply and let me know about the aggresive doc and the hospital. if you want, you can also contact me on --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. thank you very much. Ritesh Mon, 26 Jun 2006 00:00:00 GMT I am not a longterm survivor I only found out i had the cancer in August 06, I had a whipple operation on October and in November the Surgeon and the Cancer Doc have given me the all clear, all i have to do is keep praying and wait 5 years. Andym Fri, 01 Dec 2006 00:00:00 GMT Hi there, just checking in with you and your status.  I have a friend with cholangiocarcinoma diagnosed 10/05.  She has been on many rollercoasters battling this inconvenience.  She really needs some good news.  It was just good to hear someone that became disease free for at least a time.........   let me know.  Tamara2007 Tue, 09 Jan 2007 00:00:00 GMT  On 1/9/2007 Tamara2007 wrote:Hi there, just checking in with you and your status.  I have a friend with cholangiocarcinoma diagnosed 10/05.  She has been on many rollercoasters battling this inconvenience.  She really needs some good news.  It was just good to hear someone that became disease free for at least a time.........   let me know. I was referring to Dette1957.  Or anyone who is beating this disease. Tamara2007 Tue, 09 Jan 2007 00:00:00 GMT