tiapatty

If he doesn’t know the results of his tests, I don’t think he can make an informed decision about hospice. If he is still walking, I think it may be premature to set up hospice care.

If you think there is some hope for him, a doctor at the Univ. of Viriginia just published a study this past March on photodynamic therapy (PDT) so you might want to contact him to see if your husband is a candidate. The article is in the Medical Updates section, here is the outside link:

http://www.eurekalert.org/pub_releases/2008-04/uovh-clc041508.php

Patty

I have been pointing people to an article in the Medical Updates section (under Cholangiocarcinoma) about photodynamic therapy (PDT), you might want to ask if your father is a candidate, here is the outside link to the article:

http://www.eurekalert.org/pub_releases/2008-04/uovh-clc041508.php

It has minimal side effects and is accepted treatment in Europe.

Patty

Belle,

I have no idea about the effect of not giving antibiotics, my mom’s hospice nurse said that toward the end she would start to run a fever at some point and that it would peak at about 103 but he didn’t say what other effects that might have on her.

I feel so bad for you about the vomiting. My mother had some explosive vomiting last weekend, we never saw it coming, and when I called the hospice nurse she said it would be like that until the end and I didn’t think I could handle that, it was pretty much all bile, almost black in color. The worst part was that my Mom was too weak to even care that she had vomited this vile stuff all over herself. She still has 2 tubes and we decided to hook drainage bags up to them again, one tube is loose but still somewhat functional and both bags began to fill, one with lighter fluid and the other with darker fluid. The vomiting stopped but we don’t know if it was the drainage bags or the compazine we gave her but we stopped the compazine about 3 days ago and the vomiting has not returned.

What psychotropic drugs have been tried for her? Are they giving her Lorazepam/Ativan for anxiety, restlessness?

Patty

Chrissy,

Even though it is not FDA approved, I think you can get PDT here, though insurance might not cover it. I called Cancer Treatment Center and they said they do it in Tulsa and someone else said they do it at Mayo Clinic.

Patty

Mark,

Welcome, sorry you had to find your way to this board.

While I have no musical talent, a friend once said I was a born promoter and begged me to manage his band. Perhaps somewhere else on this board there is a guitarist, lead singer (maybe Lorna sings?), and keyboard player–you can tour the world, raising money for a cure, Cholangio Aid, it’s so catchy, no?

Patty

Jeff,

It seems like you have tried almost every treatment, the chapter on cc in medical books should just be your case study.

There is one treatment I have not seen discussed on here and I have been hesitant to bring it up because it is controversial but, Jeff, if you are looking for something really really novel, you might be interested. My sister was weaning her son and we decided to give my Mom her breast milk, which some think has potential:

http://cbs5.com/health/Health.Dr.Kim.2.455691.html

Has anyone else tried this? I am not sure if the breast milk has helped her or not but I think it can definitely boost the immune system, although she was only getting a very small amount. My cousin who is a nurse at the hospital where my mom was said the doctors told her they have no idea how she is still alive (that was when I realized that sometimes the doctors don’t see her, they see the tumors) so who knows?

The controversy, of course, is that premature babies need breast milk, too, and the supply is limited.

Patty

Joyce,

Well, I am sounding like a broken record because I have posted about this elsewhere on the board, but I think your husband’s situation sounds like my Mom’s and I think you should consider treatment besides chemo/radiation that does not have such extreme side effects.

This cancer comes on very quickly and my Mom was near collapse right before her surgery and she also has a heart condition and has a pacemaker/ defibrillator. After her resection, she was even weaker. She came home but had to go back in the hospital a week later because she had a biloma (an abcess that was filling with bile) and another tube had to be inserted (eventually she ended up with 3 tubes) and then she went to a rehab facility because she needed daily physical therapy. When we were finally able to get her home and to an oncologist, she took one look at my Mom and said there was nothing she could do for her in her condition.

She eventually did get chemo/radiation but it was 3 months after her resection and I think it made things worse and I really wish I had known about photodynamic therapy (PDT) because side effects seem minimal in comparison and I think my Mom could have tolerated it better. There is an article in the Medical Updates section that says it is common treatment in Europe and may double survival rates, here is the outside link:

http://www.eurekalert.org/pub_releases/2008-04/uovh-clc041508.php

The article talks about people who are not candidates for resection but I don’t see why someone who has had a resection couldn’t receive this treatment, unless there is something I am missing. Cancer Treatment Center of America and Mayo Clinic supposedly offer PDT, not sure about others.

Joyce, I see a lot on here about nutrition and I think it is the most important thing, my Mom’s friend was battling another type of cancer and her doctor told her she needed 95 grams of protein per day and I firmly believe that if you don’t do something that radical, the muscle will never come back and without that strength, the odds are long.

Unfortunately, my Mom won’t eat anything healthy and when I asked her doctors about dietary restrictions they said there were none, just to stay away from alcohol, which was kind of obvious. I practically begged them to give her some dietary “requirements” instead and they looked at me like I was crazy. By the way, I think what they serve people in the hospital in this country is just nuts. I heard the woman in the bed next to my Mom order 2 Cokes, some schools have stopped selling soda but you can get it in the hospital? That makes no sense. Then they are telling cancer patients to eat more frequent but smaller meals but they don’t feed them that way in the hospital, they bring enormous meals that would choke a horse. Sorry, just venting.

I am also sorry we didn’t go to an integrative cancer center that offers different types of supportive counseling (nutritional, etc.), maybe if someone else were giving her a hard time about her diet, she would try harder. Here is an example:

http://www.rush.edu/rumc/page-1160429723857.html

Patty