walkingthepath

I agree to go to the ER or Cancer Center immediately if you have quick rise in temp above 102 along with vomiting, or chills. I almost waited too long in October and ended up 10 days in hospital with an enterobacter infection. For me, the infections seem to happen when they change the stent/drain. Any time you push stuff in or out of the body there’s a chance of either introducing a pathogen or stirring one up. Got another lesser infection two weeks ago but was only four days in hospital because I came in sooner.

Overall, I have had too many “close calls”. I’m in the hospital again because I got dehydrated and my kidneys failed. I thought I was just suffering from really bad constipation (which caused me to vomit a lot because nothing would go down). I was constipated but by waiting three days to come in I lost so much water that I was nearly critical when I got I here. Lots and lots of fluids and I’m on the mend but…

Really – trust your body. If something’s not right look into it ASAP. Better safe than sorry.

If by external stent they mean internal/external, where the stent is a perforated tube in the duct with a tube that goes outside of the body, then I am surprised that that wasn’t done before the internal stent. I had two internal/external stents (both ducts) for a while and was so happy to have them internalized. But I knew because the doc told me that they would get clogged and need to be cleaned occasionally. That’s what I thought was happening a few weeks ago, but it turned out that the tumor had grown up past the steel stents and was crushing the duct above the stent. So now I have another internal/external stent. But enough about me.

The external part of the stent is a tube ending in a valve outside of the body. If there is blockage in the duct, a “bili-bag” much like a urine bag is attached to it to take the overflow.

The advantage to the tube is that the docs can insert a wire to manipulate the stent and can insert contrast dye to check to see how the duct is working, all without any sedation or pain, just a fluoroscope and a quick check and the doc has a full picture.

Disadvantages are many. The tube hurts and may make it hard to take a full breath. There is pain after the tube is put in that may be significant for a while – it certainly has been painful for me. The tube is held down by stitches which can pull out. It is difficult to take a shower because you need to waterproof the hole in your body and the dressing and tube coming out of it. You will need to flush the line with saline on a regular schedule, and also change the dressing. If a drain bag is needed, you need to incorporate the bag into your daily wearing apparel – usually the bag is warn hanging from the neck so that the drain point inside the bag is about nipple level or higher, so that the bag doesn’t drain liquids from the intestines all the time. You will need to empty the bag (if you have to have one) and keep everything clean. The tube and stent will need to be replaced – how often depends on how often it gets clogged but every 8 weeks or so is probably a fair estimate.

Unfortunately, if your internal stent isn’t working, the external tube is the only way to go. I can only offer my experience with this and hope your experience is positive. As always, please have your mom talk to her doctor about the effects of any procedure, get her to write her and your questions down before the visit, and go with her or have a friend go to have another set of ears to catch anything that mom might miss.

God bless and prayers for your mother,
Michael

Marion,
How are advocates selected? I realize that you are one and I thank you for that. What I don’t understand is, for each individual trial run is there an advocate chosen? Does the advocate represent the patients in only the one trial they personally participated in? Or, more likely, have I misunderstood some key concept? I think it would be great to see a patient’s voice on those micro-print drug inserts!

Adam,
I am so sorry to hear of the difficulties your wife is having. I am no expert on anything though I am finding that cc is a disease that can do unexpected things. There is no reason not to believe that cc might not let up and give your dear wife the clearness of mind he deserves. Call me naiive, I think that’s better than being pessimistic.
Regarding the 5-FU: If she is still taking that chemo, there was a very interesting study done at Moffitt Hospital (where I am now a guest) finding increased remission rates using a chinese medicine herbal concoction called “Bing De Ling” in concert with 5-FU. If your oncologist has an open mind I believe that he will agree that it bears trying. A link to information is here: http://www.ncbi.nlm.nih.gov/pubmed/16008516
Dr. Zhao, one of the study authors, just started giving me Bing De Ling along with acupuncture and other herbs (though I’ve had to stop taking it while in hospital).
Regarding your blessed children: It is so hard for grown-ups, let alone children, see the good things in someone so ill. There is a way to preserve the best of times for you and your children. I urge you, if you can, to bring a tape recorder (a video recorder is even better if your wife accepts it) to her bedside whenever she is coherent and able to talk. Ask her about her life – where she grew up: what was school like for her; how did you two meet; how did she feel when each of your children was conceived and born; what are her fondest memories of her children, you, and her life, etc. This is what I did over the course of several years with my grandmother once I’d started to see her decline. Grandma had amazing stories to tell about her journey to America, coming through Ellis Island, and starting a family. My wife and I lost Grandma quickly through medical complications. We get so much comfort, and my daughter has learned so much about her family, through these recordings.
Seeing their dear mother change so quickly before their eyes has to be traumatic to your blessed children. I hope that you will find a way to help them remember the good things, should the worst occur.
Do try to keep a positive outlook – this discussion board has amazing stories of the surprising turnarounds that can and do occur every day thanks to the grace of God.
My prayers are with you and your family. Much love to you all,
Michael