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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 11
Hello, I am starting radiation treatments on Monday [Mar.9th] am told they will be 5 days a week for 6 weeks [bile duct cancer] and will also be getting 5-FU , I had the pic put in yesterday, how long will I be getting 5-Fu? Does anyone one have any answers? Will it be the entire 6 weeks or less that that? Sincerely, Larry
Hello again, To all of you that asked about bile leakage. In my case it turned my urine to a very dark color and my stool was clay colored, and my eyes were very jaundiced, out of the 8 symptoms of bile duct cancer, I believe I had 6 of them, lost over 40 lbs. I also had leakage after they had removed my gallbladder and when, as I mentioned in a previous post my plastic stent plugged up I had a lot of leakage in my abdomen. A Dr. at Mayo told my son that I was literally poisoning myself, that's when they put 3 drains in me and also 2 metal stents. My bilirubin level has been way down ever since the drains have been removed, see I had to go several days or so with no drainage in those 3 little containers, [I called them plastic grenades]. As far as chemo treatments my blood tests have been good but with this new treatment [radiation & 5-FU] they have to monitor me real close because I take coumadin [blood thinner] and from what they tell me this radiation and 5-FU can make a persons blood thin, so have to watch that. God Bless all of you. Sincerely, Larry
Hi Tess, Thank you so much for responding. My tumor is in my left bile duct and not anywhere near the size of your Dads. I had bile leakage at first then they put in a plastic stent [St. Marys hospital in Madison, Wi.], and they put a drain on my gallbladder. See after the Drs in Madison said they couldn't operate my kids called Mayo and that's how I got up there for a second opinion. After many tests at Mayo they operated on me [gallbladder]and at first they thought they could get the tumor but alas, that was not to be. Then after about 4 weeks the plastic stent plugged up and back to Mayo they drained approx. 1,000 ml of bile from 3 different areas in my abdomen, had 3 drains in me for about 4 to 6 weeks then they quit draining and they took them out. All in all, I was admitted to Mayo 3 different times for a total of 18 days. So that's a bit of background on me. With me they have to be very precise with radiation because my pacemaker is just above where the tumor is. I think I was kind of lucky when getting chemo [Gemzar], I didn't have much trouble with that, no hair loss or loss of appetite, got a bit tired and weak at times but that was about it ,also maybe a bit of pain or queaziness in my abdomen and pelvic area, but not bad. Hopefully this new round of treatment won't be too bad either. All the best to you and your Dad. Sincerely, Larry
Hello all, This is Larry from Wisconsin again. I was diagnosed with bile duct cancer last August. Have 2 metal stents in place, have had 9 chemo treatments since Dec.1st, 3 Mondays on and 1 off and now this next Monday am starting radiation and chemo. My past chemo treatments I had Gemzar, and this time with radiation it will be 5-FU, will be doing this for 5 days a week for 6 weeks. I know there is no cure for my type of cancer but hopefully they will be able to shrink it and keep it from spreading which my chemo oncologist said that as far as she can tell it hasn't spread. Has anyone been through this before and did it extend your life. I found on the internet that 7 to 12 months was the expected survival for the unresectable cancer that I have. Well, I have the 7 months beat and now am going to beat that 12 month time frame. My question is, how does radiation and 5-FU affect a persons body and daily activities? I know that each person reacts differently to treatment but just would like a general idea on what to expect. God Bless each and everyone one of you. Sincerely, Larry
Hello everyone, I just met with my oncologist today and she has set up an appt. with a radiologist on the 24th. Sounds like 5 days a week for about 6 weeks of radiation and chemo. How is it to have that port in you along with the pump and bag with the fluid? I'm kind of not wanting all of that but guess it goes with the territory. Is it tough to shower with that on you and also is it very cumbersome with that going about your daily routine? She [my oncologist] said that it doesn't look like my cancer [bile duct] has spread at all, which is good news. I was wondering that if my 9 chemo treatments has hopefully slowed it down, why not just continue with the chemo and not go to radiation? I forgot to ask her that question but will ask the radiologist. Hope this finds you or your loved ones stable and fighting this dreaded disease as best you can. God Bless you all...Larry
Stephanie, The stents they put in will prevent the bile from leaking into her system, hopefully they put the metal stents in because the plastic ones only last for 4 to 6 weeks, my plastic one plugged up therefore really making me real sick, the metal ones I have in my bile ducts now seem to be working well, as I haven't been jaunticed [eyes or skin] at all. My thoughts and prayers are with you and your mother...Larry
Hi Tess, I've just had my 9th chemo treatment last Monday [gemzar] don't know if that's my last one or not. But I sure don't like the idea of having that needle and all in my arm for the entire time I have radiation, from what I'm told will be 5 days a week for 3 weeks. I also have CHF [congestive heart failure] for which I have a pacemaker for, so they have to be careful there as that's just above where the tumor is located. Those drains I had in my abdomin were to get rid of the bile that was leaking into my abdomin because the plastic stent they placed in my left bile duct collapsed, that's when they put in 2 metal stents. One doctor told my son that at first they drained approx. 1000ml the day I was admitted to Mayo [3rd time} then when they dried up or should I say quit draining for a few days I went to Mayo and had them removed. All the best to your dad...Larry
Hello everyone, It's Larry from Wisconsin again. Dnicetry, I read your post and I had about the same symptoms in May, abdominal pain or stomach pain and that was about it, altho my urine was very dark also. I finally saw my heart doctor the first of July and he thought is was acid or stress causing it [the abdominal pain], He gave me a prescription and said if that doesn't work see him in 2 weeks. I went back to see him on the 21st of July and my blood pressure was 70/56 he slammed me right in the hospital for 2 days for tests. Was released and the next week I really had abdominal pain, my son took me to the urgent care and they checked me over [all kinds of tests again]. That was at Stoughton Hospital and they put me in an ambulance and went to St. Marys Hospital in Madison for 3 days. More tests and an ERCP, that's when they discovered the bile duct cancer. as Paul Harvey would say the rest of the story is in the introduction section on this site. I was also wondering about radiation. When a person gets radiation treatments does he/she have to have a kind of feeder needle placed in their arm so a nurse can give them injections, kind of like when they put the needle in your arm or hand when you have chemo treatments and then leave it there while you are going through radiation treatments? I really don't like the idea of that because of what I went through for 6 to 8 weeks with my bile duct drains in my abdomin, 3 of them, so very difficult when showering and just doing normal things during the day. Ok, the best of everything to you all and may God Bless.
To Lainy and JeffG, My tumor is in the left bile duct, guess they couldn't see it good enough or was too close to the liver to get it. I'm sure I'm getting along better than some do with chemo, I usually get kind of tired and weak the afternoon after I have the treatment and the next day wake up with a headache but that goes away real soon, I haven't lost my hair altho it's been getting thinner but I noticed that a few years ago, goes with age I guess. As far as food I seem to have a good appetite. I was in Mayo 3 times for a total of 18 days, that was when I lost my taste. But I have it back and that makes me feel good. The Doctors at Mayo told my son that I have stage II bile duct cancer, well that's a heck of alot better than stage IV. Guess I'll know more on how things are going next Monday when I see the oncologist, hopefully hear that it hasn't spread. But like I tell people, life is kind of like a poker game, you have to play the cards your dealt. I haven't had any jauntice since leaving Mayo and my bilirubin count it real low compared to what it was last Aug. and Sept. My blood tests are good, so that's half the battle. Thanks for your concern and God Bless...Larry
Hello everyone, I'm Larry from Wisconsin, I was diagnosed with bile duct cancer the last of July 2008. Doctors in Madison did an ERCP and PTC found out I had cancer doing brushings during the ERCP. Was told it was inoperable. They put in a plastic stent. My kids wanted a second opinion and got me into Mayo Clinic in Rochester, Mn. Dr, G, Gores and Dr, Nagorny said they could operate, well bottom line was they did and just took out my gallbladder, said they couldn't get the tumor in the bile duct. they did biopsies on my liver, lymph nodes and said it hadn't spread as yet. Had 3 drains put in my abdomin and replaced the plastic stent with 2 metal ones. I returned home and finally went back to have the drains removed. I started chemo [Gemzar] the 1st of Dec. every Monday for 3 Mondays then a week off. I just finished my 9th treatment yesterday [Feb. 9th] Have a Ct scan scheduled for this Thursday and will see my oncologist on the 16th. She mentioned radiation treatments at our last meeting. I've read on the internet that a person with bile duct cancer has from 7 to 12 months to live. I sure hope it's longer. I've been eating high antioxidant foods, like blueberries and red grapes. as I've heard that they are good for fighting cancer. My heart Dr. told me to eat foods high in protein and calories while going through these treatments. Oh, I'm 70 y/o and I had lost about 45 lbs [from 220 to about175]but have gained back maybe 3 or 4 lbs so far. The chemo and radiation will not cure this cancer but hopefully will give me a few more months of quality life. My son and daughter have been so supportive and helpful, I thank God for them every day. All the best to everyone with this dreaded disease and God Bless each and everyone of you
Have just registered on this site, will be getting my first "chemo" treatment Dec. 1st, what can I expect?
Posts found: 11
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