hercules
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Julie, I too would like you to know your news is uplifting. Too often I read of a setback rather than a success, we are with you! Take each miracle as they come, Live every day fully, In between stressful times, seek distractions that make you happy… your time is like a priceless family jewel, spread it around wisely and don’t use your awake time worrying about what might be. May each year get better, Pat
Also Louie, my C 19-9 was never more than 8 ever, not even right before surgery so I know this is not an accurate indicator of the presence of a tumor or active cc in my system. Just like Kris’s husband I went into surgery without a 100% assurance this was cancer, I figured so what, cancer or not, something is growing in my bile ducts blocking things up, it has to go. It is possible for it not to be so bad as you might imagine, I came home 5 days after surgery, I did not have any infections or complications, I went back to work , a maintenance job requiring moving around quite a bit, in just 10 weeks, My case went well, better than most I guess , perhaps because it was not so advanced. I was not diagnosed until after surgery as well so cancer or not, something is growing in his bile duct that is blocking things up. I know it’s easy to say but don’t be afraid, It can go well. God bless, Pat
Daisy, I am sorry that competition between different hospital systems is slowing your process of making a plan. I was diagnosed in one major hospital network, and the doctor that performed my ERCP referred me to a surgeon in the other major hospital system than his own, citing this doctor as “the best” , all the cd’s of my ultrasounds, and medical record could not be read by the other hospitals computers, requiring duplication of all tests, however it all went quickly once the plan was made. good luck, Pat
Louie, when I had an ERCP they did a brushing of the tumor in my bile duct, (Hilar CC ) and the brushings came back as a type of cyst like cells, and the doctor that performed the ERCP said often the outer cells are not but the inner cells of the tumor are cc , and he recommended having 60% of my liver removed. I did and when they did their testing on the tissues removed from my bile duct they came back positive, intrahepatic tumor was in fact, cancerous in the center, and another cell type on the outside. I believed him and proceded with the surgery as quickly as I could arrange it. they cannot disturb a tumor in the bile duct or if it was somehow opened up it is like a dandillion in a breeze, a recipe for the spread of this terrible disease. Prompt action paid off and as it turned out, I have remained cancer free for more than 9 years . I wish you and your husband the best, Pat
Melinda, awesome news on your husbands clean scan…. and may all your issues go well, I am sorry his religious values keep him from using anything that may help him, even where it is considered legal for certain medical patients, cannabis still has a shadow over its use for many…. he doesn’t have to grow his hair long and wear tiedyed t shirts to use it anymore. I wish you both continued success and may god bless, Pat
Fred, I was fortunate to have a tumor discovered in my left hepatic duct (right where it emerges from the liver) and had resection surgery Jan. 06′ at which time my oncologist felt chemo was not effective for my case, so my only treatment was surgery by a skilled surgeon called the best liver man in the area by my gastrointestinal doctor. He had written numerous books on liver surgery and transplantation, he is now retired and hopefully you can find a man with great experience in this field. I am able to do everything I did before diagnosis other than lift heavy objects. I am blessed in many ways, other than a big ugly scar that resembles a mercedes benz emblem that spans my abdomen you might not know anything ever happened here. Hope for the best, your son is young for a cc patient, hopefully he will heal well and have positive results as I have. Use common sense, eat healthy , avoid chemical solvents and toxic atmospheres, fatty foods make the liver work, I avoided them before surgery. I know it is difficult, but try to avoid stress, that is my treatment and advice in a nutshell, I hope your son does well, God bless, Pat
Fred, welcome , there are many here who understand your fear, I for one was diagnosed at 49, which I felt at the time was too young. That was over nine years ago, and medicine is making huge strides on many cancers. Keep the faith, hope for the best, one challenge at a time, don’t be overwhelmed by it all, and be his key support person. He will be in my prayers tonight, Pat
Melinda, welcome to this site, I am not able to advise you on chemo brain, I have had a 60% liver resection and the stress of the first few scans, that was nine years ago , I was not as well informed as you, and at the point you are I had not yet found this site. The first year I remained hopefully uninformed, come 10 months I did some research and was very disappointed with the numbers that I found. My doctors at that time, in my case, advised against chemo. I experienced appetite problems, sleep cycle problems, and some stress as a scan neared. Pain medication constipated me right after I came home, I used cannabis for pain, for appetite, and as an added bonus it helped me sleep and it helped me not think about the stressful things. If you have a hobby, cannabis helps you get lost in what you are doing, lowering stress even more. Stay busy, if you have a dog, walk him or play with him or her, be positive, seek happiness anyway you can, go to a museum or a show, stay busy and seek relaxing atmospheres and surroundings. I see you are in California so medical cannabis shouldn’t be a problem. Some preliminary studies show cannabis may have positive effects in slowing or stopping the advance of cholangiocarcinoma . However you deal with it, I wish you the best. There are many on this site with experience with chemo, good luck, Pat
Nancy, congrats on 5 years ! When I first read about cc and it’s stats I was upset to say the least, and statistics stopped at 5 years and the numbers were not very encouraging. I didn’t find this site until I was a six year plus survivor. I have learned so much about this disease, and how blessed we are to have somewhere to talk about concerns. Keep celebrating those milestones ( My liver was resected 9 years ago Jan. 26 ) only once though, you are a trooper, Keep that great attitude, Pat
Dear Sammie, my heart goes out to you and all of you during this difficult time. Although my case never got as far as your fathers, I did think about that time, and I will say I had two golden retrievers at the time, and of course these animals are completely dependent on their number 1 human, this is a mindset that goes both ways. When my liver was resected, the only thing I wanted was to be home with my dogs, and I believe a big part of my recovery was my programmed mind and soul to take care of and look after the welfare of my furry dependants. Perhaps a big part of your fathers inability to see the world without him is because of his dog. Show him and make him know Winston is being cared for very well. My heart breaks for all of you, Pat
Margaret, one august evening I met with a friend to watch a baseball game and have a few beers and some deep fried chicken wings. That night I was kept up by a pain in my forward right side. It was not a throbbing pain like most stomach upsets, it was a constant pain, like some other irritation than usual. I went to work looking like I had been up all night, my boss suggested I go home, rest and go see a doctor. I did, he said textbook gallbladder symptoms, ordered an ultrasound of my GB and a soft tissue tumor was discovered in my left hepatic duct, which the ultrasound tech identified in her report as “possible cholangiocarcinoma” leading doctors to start in the right direction. I was lucky how things fell. It took 5 months to have tests and finally be operated on Jan. 26, 2006 , 8 a.m. with 5 days of recovery, no chemo, no radiation, just surgery which showed clear margins and no lymph involvement. Early diagnosis has afforded me a very trouble free survival, perhaps as good as it gets. At nine years later I have a small lump along my scar on my stomach, one small hernia which my doctors say not to mess with, and my life is as before other than I cannot lift heavy objects. Common sense, dietary changes, avoid contact with organic solvents, vehicle exhaust, both things common for a equipment mechanic which I am. That is my nutshell, lots of scans and blood tests over the years watching for possible return. For right now everything is good, I am enjoying life to the fullest, Being diagnosed is perhaps the toughest challenge for the human spirit, a test of mental and physical strength. It is important to not lose track of your hopes, dreams, and goals in life, and to not be beaten by this mentally. I hope something here can help you or others, God bless, Pat
Derin, My left lobe and 25% of my right lobe was removed. My surgeon said he would take a piece of intestine if he needed it fortunately he didn’t, that simplified recovery ( I was eating 48 hours after surgery, went home day 5) . He said he was able to move things around a little and stretch the duct without making a piece, nice…one seam only, not two. all my plumbing is on my right, my liver regenerated very round like an over inflated football. Other than having cc, I am a lucky guy over and over. I went back to work in 10 weeks, and finished my career 4 years later. Most of all my biggest blessing is no recurrence over time. In prayer or deed I thank god every day. I hope all goes well and you can get rid of that drain, God bless, Pat
Hello Derin, I have posted regarding this topic, and I will share with you what I have experienced with this bilary restriction issues at point of bile duct resection. About 18 months ago I had symptoms of bile duct restriction, light tan stools, mild pain, so I made an apt. with gastro I. doc who is my go to man right now, He ordered an MRI of the bile duct, as he felt this image is more detailed when imaging the bile duct. The radiologist said the opening of the bile duct was down to 3mm where the normal inside diameter of the bile duct is 7 to 9mm. I am nine years past resection, I noticed your doctor cited 3mm as the normal I.D. ….so which is it? I have read a bile duct is about the size of a drinking straw. Seems to me 3mm is about right. I am not a doctor, I know the duct is more like surgical rubber tubing than a straw, it will stretch and move around. I stretch my midsection a few times a week, one arm up, sideward bend to left to stretch right side, you can feel stuff move a little in there when you do this. I do this because you dont want it kinking up, this little tube has to keep moving around a little. Try to visualize what is in there.Don’t slouch to the right where you would possibly kink or restrict it with your posture. Fortunately I have made it 9 years without a stent or a balloon or anything like that. I know a skilled, experienced hand is priceless for this to be done with long term results. The same is true when a stomach muscle is stitched back together, I have one small lump along the stitching and I am very fortunate with this as well. I drink alcohol once or twice a week, I don’t know for sure if it is relevant or not,most cc patient probably don’t drink, by the same token most have a stent in their bile duct before 9 years. Try the stretching, it may help, good luck, Pat
