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Please help me understand Cholangiocarcinoma 6 - 8 week prognosis

Posts: 9
Joined: Aug 2012

I am writing this in the hope that someone can help guide me. It is August 25 2012. Back in the early part of June, my mom was taken to the ER. She started the week as an amazing active 83 year old woman with type II diabetes that had been managed with diet for over 10 years. She also had survived a run in with endometrial cancer 12 years ago (full hysterectomy no chemo, no radiation and no cancer for 12 years).

She was eventually diagnosed with sepsis caused by a UTI. She had become anemic. Hemoglobin dropped to 6, required 4 liters of fluid and 2 liters of blood. The fluid was rapidly infused. So no surprise she ended up with edema and then ascites a few days after being admitted. At admittance her bp was 60/37 pulse was in the 60's (despite starting the week with hypertension and a rapid pulse for which she took two medicines which kept both issues in check).

The infection was gram negative Klebsiella.

7 days later she was infection free mentally and for the most part physically better. I did not have a lot of information on sepsis at that point. She was discharged despite having gained 50 pounds of fluid. She arrived at home and immediately it was apparent she couldn't climb the two steps required to get into our home. She fell in the garage and I realized that inspite of my ability to lift the weight, I was ill equipped to lift her without risking hurting her. I called the Fire Department and they taught me how to use a sheet to lift her comfortably.

Got her in the house and in bed. That night she even managed to eat at the kitchen table with us. After two uncomfortable nights which including an additional visit from our very friendly FD when I realized that six guys with training and free access to a gym could do this better than I could with the help of my wife and disabled brother. (by the grace of God no injuries any time).

2nd night she slept in a recliner and it was obvious she was uncomfortable. I went to work in the morning. My brother was here and did what he could. He helped her use a bedside commode etc.

Walking became more difficult an eventually her arthritic knee started buckle. She stopped walking and woudl only go to the bathroom for a bowel movement meaning she was sitting in wet pad all day.

We made the decision to send her to Virginia Beach Health and Rehabilitation center. She arrived late in the day but we were assured they had everything under control. She was still supposed to be taking her IV antibiotics like clockwork daily. Despite bringing the sealed fedex box containing the meds. At 10 pm the nurse came in and informed us that they could not use this medicine but that it had to come from their pharmacy 20 miles away. It took 8 hours but it arrived. The RN stated that she would give mom her meds and call us to let us know it was done.

Next morning my brother went to see her, I went to work.

40 minutes after getting to work my brother called with those words we all want to hear, “I think you need to come here now”

I ran over to find my mom sitting in a wheelchair, unconscious and unresponsive. I also noticed she was still in the same clothing she was in the day before. After creating a scene with the facility directory I ran a long list of state legislators from the governor of number state and loca officials. Long story short she was take back to the ER hemoglobin dropped to 4 bp was 60/35. Worst of all her oxygen levels had dropped to 45%. Down from the 96-100% they had been staying at. While at the hospital the ER doctor came in no less than 4 times. First telling us that my mother had major kidney failure, 40 minutes later she had heart failure, 40 minutes later she had liver failure. They gave her 4 units of blood, a couple of days of albumin a bunch of tests and stopped the lasix diuretic that she was getting and magically all organ function started returning to normal. Also there was no heart failure. She still had ascites but the doctors thought that would pass with normal urine production.

She was discharged and spent another week at home. It was a good week. BP hovered around 105/60 and everything else was heading toward normal ranges. This lasted a week. Swelling never really went away. She couldn’t really sleep in her bed so she spent a week in a recliner.

One Saturday morning my brother and I didn’t like the way she looking. Little out of it but seemed physically normal. After some discussion we were allowed to call the paramedics. They checked her out an said she was fine. We still wanted her checked. After a big of eldest son pressure she agreed to go get checked (just not to listen to me.)

5 minutes in the ambulance she gets to the ER and her BP had dropped to 80 over 35.

Back in the hospital. 1 unit of blood and a little albumin and she was better. This time they did a paracentesis and drained 7 liters of fluid. She immediately came back to her room and asked for lunch, this was a huge blessing.

A few days later the admitting doctor came in and said my mom had advanced lung cancer. She had nodules all over her lungs and the expected that they would see cancer in the ascites all metastasised from the endometrial cancer 12 years earlier.

Couple of weeks later they sent her to rehab for palliative care.

A week later she started getting sleepy. Her ammonia level was up. They gave her a lactulose which lowered the ammonia but without doctors to check on her regularly the care was slow.

Back to the hospital. They did a bunch of tests and found that there was no lung cancer. They started treating her and she was getting better.
They saw a mass that they thought was fatty on her liver. So they did a transjugular biopsy. Two days later she was diagnosed with Cholangiocarcinoma advanced. Nobody would stage it they just said III or Iv. She was given a prognosis of 6-8 weeks and sent home for hospice.

Here is my question. (long story to get here). Other than the ascites she has no symptoms. No Jaundice, No paid (other than from some bedsores). No confusion, just a ticking clock.

Is it possible that they were wrong. There are no more tests, we are just sitting here crying and waiting for her to get sick and die. My family is a mess and it has taken me 12 hours to write this because I can’t seem to stop crying. I am strong around her, she is surrounded with love. We are doing all we can to help her but she has such a strong will to live. At 83 she has seen many friends go through Chemo and she doesn’t want any. Because of her anemia, age and general weakness the doctors won’t even consider operating.

I don’t know what to think. Is it possible to be this close to the end without any measurable symptoms? The doctors were wrong 4 times, could they be wrong again?

Am I just in such deep denial that I am missing something. Clear urine, clear thinking, decent appetite,

Please please help me understand this.

Posts: 395
Joined: Jul 2009

You need to get her somewhere where they know what they are doing quickly. I don't know where you live but it would need to be a major teaching hospital. Where I live it's U of Chicago, Northwestern, Rush. Our friend had the same thing but with all the symptoms. They did a Whipple surgery but there was no follow up with chemo. It back with a vengence 6 months later.

Find somewhere else.

Posts: 7
Joined: Aug 2012

I would definitely get a second opinion at a different hospital and with a different set of doctors. Contact her insurance company; they may be able to point you in the right direction. Talk to your family and talk to your mom, see what they want to do. Doctors are human and tests can be inconclusive. If you don’t look into a second opinion you will most likely question yourself for the rest of your life and probably harbor quite a bit of unnecessary guilt.

Posts: 9
Joined: Aug 2012

Thank you both for responding. You confirmed my suspicion that it isn't necessarily grief that is driving me to find answers. We live in Virginia Beach. Today I had my mom's medical records sent to a group of Oncologists who are not associated with the hospitals where my mom was tested. I agree about the guilt. I would never forgive myself.

Hopefully we'll have answers early next week.

Posts: 9
Joined: Aug 2012

Thank you both for responding. You confirmed my suspicion that it isn't necessarily grief that is driving me to find answers. We live in Virginia Beach. Today I had my mom's medical records sent to a group of Oncologists who are not associated with the hospitals where my mom was tested. I agree about the guilt. I would never forgive myself.

Hopefully we'll have answers early next week.

Posts: 2
Joined: Oct 2012

My mom was diagnosed with the same thing had no symptoms, went to the ER and the only reason they found her cancer was because of the RN on duty. They told her they could do surgery but there was no guarantee and a 25% change of living. They told my mom that the life spans for this type of cancer was only two years. However my mom lived 14 years. It's ok to be scared and to get 2nd opinions, I wish my mom would have after the cancer came back because the do for was not watching close enough and it spread to her lungs. Then they said there was nothing else they could do. Her heart stopped on 9-20-2012. Don't lose hope and fight you will succeed.

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