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Hi, I went for my 7th ERCP 2/25/14. It was found that I had another serious blood infection. Access to the left metal stent could not be attained, so the following day the doctors placed a perc drain and an outside bag. My pressure has been 85% relieved. My team of doctors have explained everything so thoroughly. I DID talk to the doctor about the placement of the tube and bra line. I arrived home yesterday. I have a life expectancy of 3 months. It has been a fast life!!! So glad I didn’t hold back on living it to the best of my ability. The new “NORMAL” is laying in a flat position, not able to do much for myself but have a caregiver who assists me. I was sent home with an antibiotic infusion that starts today and must be administered every six hours. This is to keep the infection under control. I think accepting the fact I have a terminal illness that I can’t do anything about has helped put me in a peaceful place. I am ready for my departure.
Hi Judi, On my 4th stent replacement, I contracted cholangitis. Like your husband Karl, I was extremely ill and admitted into emergency. I, too, could not walk without falling, couldn’t eat, talking that made no sense, and vomiting. It was a difficult infection to cure. After my 6th stent on January 5, 2014, I felt okay, but the 7th stent procedure has to be done again in a few weeks. You mention Karl had a stomach bypass. Let me know how Karl and you are doing and if the stomach bypass has helped your husband.
I was evaluated for Hospice care and because I have a $2,500 deductible and a $3,500.00 co-pay, they told me I would be responsible for meeting the deductible and co-pay first, or I would have to pay Hospice directly. I am not on Medicare, but have paid $546.00 per month for years. I suppose Hospice doesn’t want to get “stuck” with a bill when I die. Anyone been in the same situation? Thank you.
Dear Lisa, Thank you for the valuable information you provided. I am on my 5th stent/ERCP inserted in October, 2013. The gastroenterologist cleaned the metal stents in January, 2014. He was able to clean one stent 100% but the other he could only clean 60%. I may be headed for drains. Do you know if drains are the usual procedure when stents cannot be cleaned? If I am a candidate for drainage tubes, I will remember your great advice! Thank you. Patmarions wrote:fntn….I have been told that some people are more susceptible to cancer than others are. Why this is happening – no one knows.
So glad that you have found us.
Hi Marion, I have been a sugar addict for the past 20 years, but after my husband died, my addiction accelerated. I ate cakes, doughnuts, lots of pastries. I was also a 1 gallon of milk every other day person.
I believe that the liver and other organs could not properly process all the sugar.
I will go to my grave believing I was responsible for my cc. Sugar kills.
Dear Lainy and KrisV, Both of you have been so helpful in providing information to guide me through this very difficult time. As I mentioned, my husband who was my mentor, confidante, friend, guidance counselor, advisor and teacher died June 16, 2011. He taught me about courage in crisis. I admire the people who have faced so many ups and down and still do not give up. I plan on going into Hospice care, as I do not want to wait until I am unable to understand and make decisions. Yes, I filed my Statutory Will with the court house on Friday. It wasn’t necessary to file with Court, but I know the original will be kept safe. I am beginning to fill out the Probate Court forms and that will make it easier for my daughter. I don’t like to burden others with paperwork, attorneys, etc. and I was a legal secretary for 10 years prior to starting a small business with my husband. The other day I was watching a religious interview and the host was interviewing a man who had walked in fear most of his life. He was afraid to live his life. Fear had frozen him. He found the right church and became a Christian and was saved. He said “Now I am guided by faith and not by fear.” I thought these few words were powerful. His life has changed drastically and it’s as though he has been given a second chance at life. Sometimes you just never know that what you say can change a person’s life for the better. This site has given me the courage and guidance I’ve needed throughout this difficult time. And I thank you for taking the time in your busy schedules to respond and share your experiences! As always, it is appreciated. Sincerely, Pat from Linden, MI
Dear Nancy, This is a supportive website and I encourage you to write, write and write more. I found this support group in 2013 after being diagnosed with the same type of cancer. I will be 63 next month and mine is Stage IV, inoperable, lymph node metastasis. I hope you will reach out to find comfort here and anywhere else you feel comfortable. The members of this site gave me information about chemo and now I am gathering information about hospice. I have a doctor’s slip for hospice to evaluate me. I am to the point where I seek quality and not quantity of life. I wish you strength during this time of sadness. Please continue to write! Please feel free to write to me, too! Sincerely Pat from Linden, MI
Hi, Would like to know your opinion about Hospice care. I was diagnosed Memorial Day 2013, Stage IV, inoperable. I just had my fifth stent procedure. I tried chemo in October, 2013, ten days after my 4th ERCP. A few days after each chemo, I was wiped out for 9 days, laying in bed totally fatigued. In November I began to get chills and felt unwell. I did not want to go to the hospital because I was too sick! December I wheeled into the emergency room and was admitted due to a blood infection. After five days I was released and home care administered cipro for five days. I thought the infection was gone. Wrong! In December with each passing day I got weaker, nauseous, falling down, chills, could not eat or drink. I was really on my way out and again, felt too sick to move. Also, I had not completed my Statutory Will and felt I had to finalize it because I felt so bad and felt I was on my way out of this world. In January 2014, I walked into another hospital (my hospital that does the stents and what a great job they do at keeping me alive!). It was determined I still had a serious blood infection and I was admitted for three days. My hospital got me back on my feet! This past week I actually feel better than I have for three months. Appetite is back, nausea is gone, and I am getting stronger by the day. In November, December and first 9 days in January, I could hardly walk! Make sure that after stent procedure that you do not get a blood infection. Get to the doctor immediately. I suffered several weeks due to being so sick. I no longer take chemo, two treatments were enough for me! Next infection, I’ll get to the emergency room pronto! I’m taking it day by day and getting my legal papers in order while I feel okay. I am being hospice evaluated in a week or two. I don’t want to wait until I’m incapacitated to make a decision about hospice. Does anyone have any opinion about hospice? Any suggestions would be appreciated.
Dear Kris, Thank you for your note. Comfort is the only option I see. Please try to take care, Kris.
Hi, I’m on Cis/Gem every other week. I gave it a try but after two chemo treatments, I’ve cancelled my future appointments. The first time I was somewhat hopeful but after spending 9 days in bed with extreme fatigue, extreme soreness in the abdomen that felt like I fought and lost! all month, I went for my second chemo treatment. I’ve been sick every day. I am taking meds for pains, dizziness and do not have the strength to eat. I have been much to tired to even go to the doctor. I feel that I am getting better, but not to the point where chemo will be a breeze. There’s other issues, too. I plan on spending my remaining time at home and find solace and comfort here. I reached out to the community and decided why not try it. Well I have, but I’m done. I know the way I feel is not as bad as others have felt. The courage of the members is absolutely amazing. I appreciate your quick response to my inquiry “to chemo or not to chemo?” I hope you are able to find some happiness in your holiday season.
Oh, forgot to mention, I am on a very low dose of steroid administered with the Cis/Gem every other Thursday. I have one day per week of chemo and the next week I am off.
Hi, My appetite is good, too, but it’s always been that way. I just had my second Gem/Cis treatment last Thursday. I’d like to know if your Mum is having problems with acid indigestion. I eat very little in small amounts because I feel full very fast. Is your Mum experiencing fullness, too? If she is doing better than me, would you tell me the kind of foods she is consuming. Right now I feel quite hungry but after four days of what felt like internal brusing to my stomach, I hesitate to eat at all. Thank you for any input you may be able to render.
Hi Mary, I just had my second dose of Cis/Gem Thursday and I know what you mean about feeling better I also have a tumor on the liver, artery involvement, mets. I also am surprised at how much better I feel. It will be interesting to see how we both do on this chemo combo. I am so happy you and I feel good today! Sincerely, Patricia
Hi Mary, I also had my second treatment of Cis/Gem on Thursday. I’ll check on your posts to see how you are doing with this treatment plan. Patricia
Hi Randi, So happy for you! It’s great to hear you are doing well. I wish you many days of good health.