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(20 replies, posted in General Discussion)

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.

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(11 replies, posted in Introductions!)

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.

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(20 replies, posted in General Discussion)

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.  Pat

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(20 replies, posted in Introductions!)

marions 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.
Hugs,
Marion



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.

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(10 replies, posted in Chemotherapy)

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

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(10 replies, posted in Chemotherapy)

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.

Hi Mark, I had the power port put in last Tuesday and I have a very large bruise, swelling and a large lump.  I think the lump is the port.  Maybe I should have the doctor check mine out.  You said yours was immediately ready for use.  Yikes, I can't imagine mine being used.  I was extremely sore the first three days but it's a little better this 4th day.  Thanks for the info and perhaps I need to get to the doctor for a check up.

Hi Ceci, Merci beaucoup to you!  I love New Orleans and the people.  I am thinking of going to Mardi Gras! 

I want to let you know I had the power port placed this past Tuesday.  I am allergic to some metals so they had a plastic one in inventory.  The doctor asked me what I was allergic to and he said a port made of titanium may cause a reaction.  So, please discuss with Allison's doctors if she has allergies to metal.  It's been five days since the power port placement and I have a large bruise and swelling. It is the size of a coffee cup plate. It was stitched and glued and the first three days there was a pulling sensation when I moved my upper right body, bent, laid on my right side.  But that is getting better.  The hospital gave me no other options except the power port.  I understand that the port is definitely the way to go to avoid all the probing and picking time after time.  I am happy to hear Alison has tolerated the Gem/Cis!  I am starting the same chemo treatment on Thursday (if the port heals).  A friend of my is a hospice nurse and we are going to visit them tomorrow and she will take a look at it.

You mention that Alison will have the port placed one day before chemo? Truth be told, it's been four days for me and I am so bruised and sore that there is absolutely no way I could accept a needle or anything in that area for chemo.  Perhaps the doctor did not do mine correctly?  You may want to discuss with Alison's doctor as soon as possible. I am not even sure if my first chemo appointment on Thursday is going to happen.

May I ask you one question:  Alison had steroids.Did she have any swelling?

This is a great site!  It's so nice to exchange information with people who have knowledge and experience on what we are going through.  If you get a change, please let me know about the steroids.  Thank you.  Patricia from Michigan

Hi, I'm a 62 year old diagnosed in late May, 2013 with cholangiocarcinoma, Stage IV, inoperable, metastisis to lymph nodes, 7cm tumor, 4th ERCP stent placement, last one on 10/16, went from plastic to metal.

After about six months of postponing port placement and chemo of Cis/Gem, I sought the advice of the members on this site and had a port placed on 11/5. Chemo to start 11/14/13. I was afraid to chemo because I'm feeling fine, but I know it's just a matter of time before I go downhill. 

Since installation of the metal stent on 10/16, the pressure in my abdomen is no longer there.  In October I went to an amusement park and rode the roller coaster, I've been dancing twice, went to a great Halloween party.  If I did not have the opinions of two doctors and didn't have the stents, I would think they made a diagnostic mistake!!!  Besides fatigue I feel quite good.

I am anxious to see how the chemo affects my body.  November 14th is C-Day.   I'll update so that new members can get some feedback.  Knowledge is Power.

Hi, I am 62 year old female diagnosed 5/2013 with cholangiocarcinoma.  First symptoms; severe itching and severe jaundice. Found 6 cm mass in the liver and mets to nearby lymph nodes, inoperable, Stage IV, doctors are not optimistic about chemo of gis/cis helping me.


I would be interested in knowing what we have in common:  The following apply to me:

1.  Ate huge amounts of pastries as a way of self-medicating after my husband died June 16, 2011.

2.  Most of my adult life I have been 20-30 lbs. overweight, with high BMI.

3.  Stressful job (for me anyway).

4.  In 1990's anemia due to bleeding ulcer.

5.  In 1980's blisters would appear in right nostril.  Doctors could not tell me why.  Smoking, of course, did not help.  Quit in 1988.

6.   In 1990's blister outbreaks but infectious disease doctor said bloodwork indicated I had been exposed to Epstein-Barr virus.  Prescribed Zovirax but I could not afford $100.00 meds. Doctor also said I had previously had mono.
In the 2000's, blisters are infrequent. I use to get them every month and body aches and fatigue would last 10 days.

7.   Physically ambitious but no regular exercise program.

8.   In late 1980's I suffered from anxiety and panic attacks and Zoloft and Tofranil were prescribed.  To date I still take those meds with an occasional Xanax.

9.  Never a big fruit and vegetable eater.  Preferred carbs. Coffee intake 2 cups per day.  Occasional soda (coke and pepsi).  Huge 2% milk fan...1 gallon every 3 days.  Little red meat and fish. Like bread and butter.

10. Drink alcohol the last few years but not much, only when I go dancing twice a month (4 drinks total per month).

11.  Weakest part of my body has always been my stomach.  I've been on Prilosec on and off for 15 years.  I thought I had problems because of my diet and stress.

12.  My three siblings health is very bad.  Sister has lupus, brothers have diabetes and serious heart disease.  Until my diagnosis, I was the only healthy one in my family. 

13.  Mother died of cerebral hemorrhage because of high blood pressure, would not take her pills and continued drinking 40 oz. of beer a night.  Smoker, passed away at 73.  Her family's health problems: Alcoholism, high blood pressure, stress related symptoms.

14.  Father's died at at 73, smoker, heart problems, died of congestive heart failure.  His family's health:  Heart problems due to diabetes.

15.  I have been a business owner and it could be stressful.  My main hobby was animal rescue (self-funded).  Lots of contact with cats and dogs running the streets of Detroit's inter-city.  Did all clean-up using bleach and water.

Do we have anything in common that may have attributed to cholangiocarcinoma?

Dear Willow, Your memory of Martha will be a great tribute to her.  You are a good friend.  I still think of my Mother, Father and sister Kathryn who have all passed away.  Not only have their bodies left the earth, my husband died on June 16, 2011.  He was a wonderful man and a good example of what people should be.  He was joyful, cool and kind.  He will never never die as long as people who knew him continue to remember him and talk about him.  I think of my dearly departed family each day and sometimes I feel their strong presence is with me, especially since my diagnosis.  I wish you peace.  Patricia Avery a/k/a LadyLinden

Hi, Thanks to all who posted what a person needs when going to chemo.  Your information will make my first chemo not so worrisome.  There is nothing like valuable advice!  I've also received a lot of encouragement from the many members on this site.  You have helped ease the sadness I have been carrying around.  The hospital has been vague. They do not want to commit to answers because each individual is different (so they say).  Turning to our members has been more helpful than anything I've read or been told at the hospital.  Many Thanks!  Patricia Avery a/k/a Linden, MI

Dear Marion, Lainy, , Kris V, Shelley, Dorien (Bompie), Kris00J,, Porter, Mary, PLC,

Just a note to thank you all for your thoughtful advice and wisdom based on your own personal experiences.  My husband died on June 16, 2011.  He and I were in business together.  I am use to making hard decisions and trusting my judgment and instincts. I realize now that he played a very important part in my decision making.  We worked well together.  Thank you very much for "stepping in" for him.  He would appreciate you being there for me.  Sincerely, Patricia from Michigan a/k/a LadyLinden

Hi, I am 62 year old diagnosed with Stage IV Bile Duct Cancer, Inoperable on 5/29/13.  I've been so thankful for the 62 years of good health and this was a real shocker.  I REALLY NEED YOUR ADVICE:  I have been stented four times since June 2013 (the first was not positioned correctly so a repeat was done a week later).  I have a 7 cm tumor on the liver with metastasis to the lymph nodes.  My symptoms are few; I feel fatigue but partially due to sadness, some days I get full quickly and it feels like there is a baseball in abdomen. Other days (when I go out) I feel pretty good and can walk around for hours.  I have refused the chemo Gem/Cis, but my oncologist told me not to wait much longer.  I am scheduled for port placement on 11/5.  I AM SO AFRAID! Afraid that the chemo will do more harm than good.  It seems like people start the Gem/Cis and it works for awhile, some with horrible side effects and others tolerate it rather well.   Who do you think I should talk to regarding my decision to chemo or not to chemo.  I am calling my nurse coordinator today to ask if she can arrange a meeting with people in my similar condition who have taken the Gem/Cis.  My inner voice keeps telling me NOT to do chemo and let nature take over.  Like I said, I am so afraid of triggering a chain reaction of side effects that will make me feel worse.  How did you decide to chemo or not to chemo.  I REALLY APPRECIATE your input.  LadyLinden

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(14 replies, posted in Members' Cafe)

Hi Lainy, I know what you mean about going on the site "for entertainment."  I belong to POF (Plenty of Fish) for the same reason.  Loved your post, we need the "WILD Davids" of the world to make us smile.

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(11 replies, posted in Good News / What's Working)

That is wonderful news!  I am so happy for you.