New arrival on the forum

Keith · Regular Joined: 30 Aug 2007 Posts: 13

I'm new to the forum. My wife has stage 4 tumor around the celiac axis and has been taking Gemzar and Tarceva since mid-February. She suffered with chronic diarrea until July when it went the opposite. July 30, with bowel pain reaching a break point, she had a CT that was inconclusive. She had a colonoscopy on August 3, and had a complete blockage 15" into the rectum. She had surgery on August 4 and the surgeon, using a scope, saw "paint splatter"-like carcinomas in her diaphram, liver, down to her uterus and ovaries. He did a loop colostomy and got out of there. On Sept. 10, my wife is due to start the older drugs, 5FU and mytomycin. We have little to look forward to. Anyone had an experience like this?

freeio

Hi Keith,

Welcome to the PC Forum. This is not a particularly fun place, but there are some people here who can help answer your questions. Most are care-givers, and a few of us are patients. I have been battling PC for three years now. My story is in the blog listed below.

Yes, we have seen this before. PC is very aggressive, and spreads all over. It can come as a surprise just how far it has spread, because until the patient feels symptoms attributable to where the cancer has spread, or until it shows up on a scan of some sort, the PC can remain hidden. In my case, I had breathing difficulties four months before they could see any metastatic lung cancer on the CT scan, and I had terrible back pain for most of eight months before the CT scan saw that I had metastatic bone cancer in my lumbar spine. The tests are just not that sensitive. Until a tumor is a billion cells or so, it is too small for a CT scan to see, and even then it may be mistaken for something else.

The most sensitive test that I know of is the PET scan, and even it is not great because it is hard to read. They found my peritoneal tumor using a PET scan last year, but they were very tenuous about it until it grew more and showed up on the CT scan.

I am very sorry to hear about your wife. In many ways PC is harder on the spouses, friends, and caregivers than it is on the patients. Watching helplessly is painful. PC is a miserable business, but one which we do not get the chance to refuse. My only advice is to continue to let her know you love her, and support her through the whole process.

Marty
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

Keith · Regular Joined: 30 Aug 2007 Posts: 13

Marty, thanks for the reply and understanding. I've learned one thing very well. PET and CT scans are good for what they show, and aren't worth a darn for anything smaller than the eraser on a pencil. My wife, Gayle's, PC original tumor did in fact react to the Gemzar/Tarceva combo and didn't "grow", however the PC cells mutated and 'went under the radar' to spread out like pain splatter. For months we had high hopes because everything was showing positive results. The scans were good, the CA 19.9 showed significant drop, Gayle's appetite was good, etc...
Then the bottom fell out. Such is PC. Very nasty, agressive, tough cancer. You are an amazing fellow to have endured all that you have and lasted three years. I know you have a strong will to live and I admire your courage and endurance. Again, thanks for posting a reply and caring about our plight. We go today to follow up with the surgeon on Gayle's colostomy. Don't expect any new info, but one never knows.

Keith

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