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Jessica, although they seem to be more common as time goes on, young cc patients seem to be more common today than ten years ago, it is still quite infrequent. I was 49 when diagnosed and operated on. It happens, and usually without symptoms until later stages. I was fortunate, in the words of my surgeon, my tumor "manifested itself in a way that produced early symptoms" , your tumor was found during pathology tests after transplant, both cases incredible strokes of luck. Early diagnosis is a key element to long term survival. May your good fortune continue, Pat
Jean, this topic is rather controversial as to chemo or not to chemo. My case was similar ( hilar tumor in left hepatic duct, resection of left lobe, 1/3 right lobe,gall bladder and partial duct resection, clear margins and no lymph involvement ) My doctors recommended no chemo. I chose follow their advise. I am about 10 weeks shy of my 10 year anniversary of chemo free, cancer free life since discovery of my tumor . I have supported others with this cancer, none did well, all did chemotherapy. One woman, 32 years old with a two year old daughter, died within 24 hours of contracting an infection from her chemo port. This disease can break my heart even when someone has done well. I have told my story many times but everyone is different as their fingerprint. I am sure there are those that did well with chemo, and many will support it, listen to your doctor, he wants you to win if the outcome so far is this amazing. Sounds like your mother has gotten a huge miracle on this one, congratulations, Pat
Cathy, how wonderful ! Good for you! I hope all is well, enjoy every sunrise and the day that follows...God bless, Pat
Dear Aiste, I haven't been seeing any recent posts, and I feared his bile leakage was why, oh I am saddened by this news, I am sorry for all of you. I am at a loss for words, I will pray for you all, Pat
Marion, I haven't felt as though,I haven't checked, and when I was checked in at the doctor's office, they did not mention it being elevated, realize I have been living with this for a while, and honestly I didn't think I would last this long. I have had a few people suggesting just get it fixed, and it is true I am enduring more pain and discomfort by not doing it,so I guess it is time. I much prefer being a visitor or an advocate at the hospital than a patient. Oh well .... better start taking care of this body, I may need it for a while yet, Pat
Excellent news Matt, Good luck with everything, Pat
Well Marion, just 48 hours of anti-inflammitory medication (maloxicam) taken for my bad shoulder and the bile duct is opened up enough for me to see a burst of bile again after drinking 2 beers. I feel better too, I wonder how many people in a similar position with the same symptoms, went right to a specialist that might miss the connection, or any doctor not having all the facts about their issues elsewhere in the body, and just stent an inflammed bile duct , which would have difficulty even with a stent in place. I am a mechanic, I diagnose and repair things, wow am I impressed with the man that figured this out, How many people got a stent for an inflammation, I wonder. I would have gone in for a stent if that was the initial proposal to open things back up. I have read here for a while and this is new to me. I hope this helps someone before someone jumps to the next step. take care, Pat
Upon seeing my general practitioner regarding light colored stools and he reminded me of the last time this happened I also complained of extreme pain from my left shoulder joint which is completely worn out. By rights I should have a complete shoulder replacement. I dread another major surgery. The last time I had an MRI the radiologist mentioned "I can't believe he is not screaming about his left shoulder". When the MRI tech. mentioned this to me. I replied, "who do I scream to? " My shoulder is in a state of inflammation, which sends off some kind of distress hormone that triggers inflammations to light up all over the body, especially in locations of former trauma and scar tissue. He wrote me a 10 day supply of an anti inflammitory med. and my shoulder felt better and my stools went back to normal coloring.So who would think my bile duct restriction was caused by that? Thank god for well informed, smart doctors...Pat
I have a news flash for you Aiste, there are doctors here also that will not talk straight when speaking to the patient, never mind his family or advocate, just ask Duke. Selecting a doctor or hospital is a big part of the outcome, where ever you are. Part of it is Luck of the draw, a great doctors flawless work can be damaged by a nurse or other staff. Doctors can have egos that are bigger than the hospital they work in. The surgeon I had was a leader, a teacher of other doctors,and the project supervisor for this whole job. He was the man in charge, and you could read respect (and fear) in the actions and words of the nurses. They would not do anything without his nod. This was ten years ago, the process worked in my case. Sadly the economics surrounding my case are probably quite different than your father's. I had medical insurance as part of my job's pay, it was one of my blessings as I could freely choose my doctors and even now I can , if and when needed, seek treatment anywhere many on these boards have. You seek answers I did not have when I was where your father is. You are all amazingly well informed compared to my family and myself 9 yrs. ago. It is hard for me to understand the process but communication is important. The computer is a great tool, It helps us find information and more, People study this disease , as you have, and in some ways by what you say and by the nature of your questions,you intimidate the doctor making him want to be quiet and recheck his own info. consider that, scary, Pat
Aiste, I am sorry to hear about his bilary leakage, this location where the bile duct is rejoined together is perhaps the toughest part of this surgery. My point of bile duct resection is built up with scar tissue which eventually restricts the flow of bile within the bile duct. I have been witnessing lighter and lighter stools, for a few weeks, this has happened before and I am hoping for it to change back as before. Pain too and I do my stretching and I massage the area hoping to get things moving a little, I hope to avoid a stent as long as possible, I am not jaundiced yet but I see this condition on and off. hopefully it will subside . The excitement never ends and this bile leak could explain your fathers temperature fluctuation. Let's pray this too subsides and functions better, he is moving around and walking some, this helps get everything moving a little. You are all in my thoughts and prayers, Pat
My, your mother's case sure moved along quickly it seems, I don't know how long all the tests you mentioned took to do, I was almost 5 months from finding a tumor to surgery. I hope all goes well, there are a few recent resection patients posting lately, and all, including your mother, sound promising. I wish you continued success, Pat
Duke, firstly I am sorry how it has gone here. I have no base of experience with chemo therapy, but I do know you are the Braveheart of cholangiocarcinoma. I am impressed with your knowledge and wisdom. It is easy for a doctor to give up, and you look beyond that for answers. I don't know how my fight will go, none of us really do, but you are inspiring. I hope your spirit is never beaten, it hasn't been yet...stay strong, Pat
Aiste, hello and good day, the emotional sensitivity I think is from the i.v. pain medication, I was teary before I went home and I was NEVER like that before, it could also be that you realize your mortality and that is a release, I still cry reading these boards (sometimes even my own when I read them) so this disease is life changing, and he is thinking about sentimental things he hasn't thought about in a while, it is emotional even for the toughest man ( I am hercules you know and it was hard on me) ha! So be supportive of dad , being cut open, having stuff taken out, being sewn back up makes you look old, go easy on him, he'll look better at home with his grandson and You, Be patient and take care, Pat
P.S. Best wishes from the other side of planet earth.....
Fred, the liver regenerates in just 4 to 6 weeks, an amazing thing to try to imagine what is going on in there on a cellular level, eating healthy is important, thank god my daughter is a great cook and the smell of her cooking makes even a resection patient hungry. I have posted about my appetite problems, for me cannabis and my daughters wonderful cooking made a huge difference.Marinol helps for some, however for me marinol had minimal effect compared to high grade cannabis. I lost a third of my body weight by 2 months past surgery, it is still hard to keep my weight up (cashews and milkshakes are good calorie bursts ) best wishes to you both, Pat
It is difficult to explain the feeling Julie mentioned. It feels great to share the excitement of a clear scan , even after years of good news, it is still stressful to even take a look. When you share such news, you do think of the others on this board whose scan may have shown a return, which deflates everyone reading here. Those of us who have done well do feel this tug on our hearts when we write, unfortunately not enough of us get that good news to share, It is hard to describe but there is a sadness in writing things when you try to see them through the eyes of someone who has just received devastating news in their test results. This disease is awful, it tortures us even when it is in remission, the right thing is to share triumphs and setbacks, that is a part of learning how to beat it.Victories or setbacks, we are all here to find ways to beat this, we must be strong and hopefully someday we all will beat this, until then I will share my story, Pat
Darla, Marion, Lainy, yes there are times it is not the right time to share all related experience, and part of a support discussion board does require being mindful of how some may interperate well meant words in a hurtful way, but also posting good news is not chest thumping, it is sharing sometime the most incredible and relieving news you could have gotten from a doctor, or anyone for that matter, They have opened the envelope, and the results are... you have won the lottery of life for 1 year.....unlimited breaths. You've GOT to tell someone.... right?
Aiste, good to hear he is happy and moving around, it is good he made a friend in there,stomach cancer, like all gastro-intestinal cancers, is hard to beat too. sounds like he's doing fine, God bless you all, every day will get better, Pat
Dear Julie, I too have posted about how it feels sharing milestones amongst some who do not fare as well. It is your good heart thinking of others feelings while you write. There is a reason we are here, a reason we come back to this site, it is because we want to give others facing the tough part of their journey hope. When I was reaching 5 years of survival, I tried to look beyond statistics and find a long term survivor, I asked my surgeon about how many long term survivors he had , he said he had many, this was just as privacy laws were being re-written in the states so he did not put any of us together at that time. I did not have this site then, and I never had that person with more time to share details of his/her survival with me. I did not know I would become what I wanted for others. So do not feel bad sharing victories dear Julie, let time go by and the good feeling overcome the uneasy ones when sharing good news. What would this site be like if all posts were from people who are sharing bad news? Keep sharing, and don't let your good caring heart beat you up while you are doing it, take care...Pat
Aiste, I was a little concerned about his fever, thanks for letting us know it has come down. It is good he is eating, I was all liquids, and on day 3 at 3 a.m. I was awake and suddenly extremely hungry, so hungry I was uncomfortable, the kitchen was closed, the nurse was able to put together a small can of chicken noodle soup and a carton of white milk from the family waiting area, it was the best canned soup I ever ate, and I like canned chicken noodle soup ever since...lol... they would not give me solid food until the doctor said o.k. seemed like in no time I was out of there yay! Back home with my dogs and my fireplace to relax by.... I am happy for all of you, hug that mother of yours, too much crying is not good for anyone, tell her Pat said all will be alright again soon, keep me updated, Pat
Aiste, try to remain strong, sounds like mom and dad need you and your strength. When I was post op I did not know about liver enzymes and other details, I think the doctor doesn't want to complicate your mind with too many details, Just simply focus on healing and talk about what you all will do when the beautiful summer weather comes, try to avoid shop talk til the dust settles as they say, fill his mind with hopeful thoughts of what he wants to do after he gets better. Think of something you all can do as a family together and this will give his mind proper direction, talk about favorite things you have done and try to get his thoughts out of that hospital bed, I bet a well chosen topic can get all your minds off negative thoughts, for now the goal is to heal up and go home. Stay positive, we are pulling for you too, Pat
Fred, good to hear the surgery went well... I hope all goes well from here, Pat
Aiste, sounds like everything has gone perfectly so far, let's hope he's comfortable til he see's you, I will hope and pray for his continued success, Pat
Aiste, I did very well after surgery, The surgeon was not sure if he would need to take a piece of intestine to make a section of bile duct if needed ( fortunately, he did not, he said he was able to move things around a little bit and made what was there reach. ) I was up and walking on day 3 and I went home on day 5 after surgery. One big difference is I was 49 at the time, so I was 25 years younger than he is, he may not be expected to heal as quickly as I did, but we can hope for results close to mine as you say he is healthy. The toughest thing about it is your stomach muscle is now cut and re-sewn together. That is probably the most uncomfortable thing about the recovery is the tender stomach for a while, sitting up to move and such. He has you, which is huge also, my daughter looked after me and cooked and cleaned and helped me do as well as I did. Without her I am sure it would not have been so successful. Tell him be strong and everything can be as good as before. Best of luck to you both, Pat
Dear Aiste, most Cholangiocarcinoma patients are not definitively diagnosed until after surgery, usually the tumor should not be disturbed until removal. Your father sounds like a very special man, and his condition is operable, which is huge. I wish you and your father the best possible results, god bless, Pat
Catherine , great news ! Good to know chemo is effective against some variety of this awful disease, congratulations, Pat
Posts found: 1 to 25 of 135
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