Intro

JLC · Regular Joined: 18 May 2008 Posts: 23

Hi.

My mom now has stage IV pancreatic cancer that has metastasized to her liver and abdominal lymph nodes. Her illness has been long and confusing. In the fall of 2004 she complained of abdominal and back pain and after numerous tests they found a pre-cancerous lesion on the head of her pancreas, and "abnormal" islet cells. In June of 2005 she opted for the Whipple, but when they got inside they discovered that she had cirrhosis and could not perform the procedure. They removed her gal bladder only and sent her home. The cirrhosis was a mystery, she has never been a drinker and never had hepatitis. The pain continued and she was prescribed heavy narcotics, but the word "cancer" was never uttered until a few months ago.

Mom had three rounds of gemcitabine, we were told for pain management. Then tarceva was added last fall. The chemo affects were awful, and I am still unsure if it was the chemo or the disease that made her so sick. She was continually prescribed drugs that are contraindicated for liver disease and the oncologist virtually ignored the liver problem.

Her mental state deteriorated faster than her physical state, she became confused, disoriented, mean and was miserable. At one point my sisters and I suspected that she was overmedicated because she was passing out far too much and would pass out in a plate of food. Mom was taking pain killers as well as two anti-anxiety meds. Once we removed one of the anti-anxiety meds Mom became more alert. But it was a push to get the doctor to try it.

Last month Mom fell and a CT was done looking for fractures. For the first time the word "cancer" was used and it had spread. I am still unsure just when the cancer started. The whole process that began in 2004 has been confusing and riddled with poor communication. Her original oncologist left his practice and the one that replaced him was very agressive and did not field questions well. I had a high risk pregnancy and difficult birth with an ill child in late 2004 and was not able to be there as much as I should have until recently.

Treatment has been stopped and Hospice has been called in. There are no orders for further CTs, or any other tests for that matter, and the oncologist has basically signed off of everything. We are trying to find a primary care doctor locally that will see her. Mom is experiencing symptoms that as near as I can tell (thanks google) are resulting from poor liver function. She has terrible edema and is jaundiced all the time. The Hospice RN has been wonderful about listening to our concerns and sharing information.

I don't think that Mom really understands what is happening, she is that disoriented. However, she isn't as mean and cruel as she has been and seems to be at peace.

My mom is 69 years old.

Queensland Girl · Posted: Mon May 26, 2008 9:30 pm Post subject: Re: Intro

Hello,

you mentioned you Mum has a lot of edema. Is it around her tummy, so that she looks pregnant? Also do her legs look puffy and her ankles swollen. My Dad got this condition and it is called ascetes. It is where the liver leaks fliud into the abdominal cavity.

My Dad had a procedure where they put in a shunt to have the fliud drained, they also put him on diuretics. This helped immensely with his comfort. He was in hospital for three days.

If your Mum is not able to have the surgery, maybe they could try the diuretics on their own. Normally doctors don't like prescribing them for long periods of time as the tablets damage the kidneys. But in my Dad's case, it was the lesser of two evils.

I hope you Mum gets some good care and some answers. My thoughts are with you.

Regards,

Queensland Girl

In · Posted: Tue May 27, 2008 3:05 am Post subject: Re: Intro

Just wanted you to know, I'm thinking of you, your Family and your Mum.

Queensland Girl is full of information and advice, so feel free to ask the questions and any concerns-

*Thanks Queensland Girl*

The edema is something- they can help with. It'll make her alot more confortable. The state of mind- sometimes can be the hardest. If they are unable to get around you still can have a conversation. When the mind goes then it's hardest on the Family.

my thoughts are with you.
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JLC · Regular Joined: 18 May 2008 Posts: 23

Thank you.

Mom suddenly took a turn for the worst last Saturday. She passed away early Thursday morning. It was all so very fast. We were told on Mother's Day that we had six months, then we were told last Saturday two weeks. She passed at home surrounded by family.

Queensland Girl · Posted: Wed Jun 11, 2008 6:03 pm Post subject: Re: Intro

Oh JLC,

I'm so sorry about your Mom. Words cannot express the feelings you have when losing your Mom - I've been there.

I can say though, that life will get easier. Not today, not tomorrow or even next week. But one day, the sun will shine again for you.

I have shed a tear for you.

My sympathy to you and your family,

Queensland Girl
_________________
Regards,

Queensland Girl

Mum diagnosed June 1993, surgery and chemo died August 1993 (Pancreatic Cancer)
Dad diagnosed July 2007, chemo only died January 2008 (Pancreatic Cancer)

brainman · Posted: Fri Jun 13, 2008 5:51 pm Post subject: Re: Intro

J, I am very sorry about your mother's death. It sounds like you didn't even have time enough to adjust to the idea the she would die soon. I only had 2 months from the time my mother was diagnosed.

My heart goes out to you and your family.
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