Topic: Fluid Retention

My husband, Dan, was diagnosed with inoperable cholangiocarcinoma on 8/23/05.  Resection was attempted but during surgery it was found that the cancer had spread to his abdomen.  He is 57 years old.

He received treatments of Xeloda and Gemzar from November '05 through January '06.  He is seeing Dr. Lentz at UCLA and at his last visit was told that his cancer was "stable," meaning that while the tumors had not reduced in size, there was no noticable growth or spread of the disease.  His liver studies are improving and his CA 19-9 count fell from over 400 to 229.  He recommends continuing treatments and Dan will begin chemo again on April 17.   He had to discontinue treatments for awhile because of blood clots he developed in his legs, an ulcer that caused internal bleeding and extreme fluid retention in his legs (and abdomen).  He has had his lungs drained at least 5 times since diagnosis.  The blood clots have disappeared and his ulcer has healed. 

He continues, however, to retain fluid in his legs which is quite painful and causes difficulty walking.  His lungs also continue to fill up and it now seems they have to be drained every 3-4 weeks.  We understand this is from a lack of protein caused by the liver not functioning properly.  He is taking Aldactone (25 mg) twice a day and keeps his legs elevated as much as possible.  He is also in physical therapy and wears support stockings (very uncomfortable), but the problem persists.  I've gone on several cholangiocarcinoma sites, but haven't read anything about fluid retention in other patients.  Has anyone experienced this and are there any other treatments out there to lessen the discomfort or help eliminate the fluid?

Juanita

Re: Fluid Retention

Hello Juanita.
My wife Dawn has had a problem with fluid retention since her resection on Jan. 12th 2006.  I

Re: Fluid Retention

Richard, Thanks so much for your response.  Your wife's situation does sound different than my husbands, since she has had previous kidney problems.  I'll look up edema as you suggested and, hopefully, something will turn up.

Funny (not really) how some people have to endure so much illness and hardship in their lives.  Your wife having a kidney transplant and now battling cholangio.  Seems so unfair.  This is my husband's third primary cancer since 1992.  He had stomach cancer and then 6 years later developed non-Hodgkins lymphoma.  While he had to endure chemotherapy and radiation for both, we were very lucky that the cancers were found early.  You'd think that would be enough for one lifetime, but now it's this horrible disease and this time the prognosis is not good.   He has a wonderful spirit and remains positive, but my heart breaks at how much he has had to suffer.  Through it all though, we will not lose hope.  He's won before and he can do it again.  I know your wife can, too, and send her and you our very best.

Juanita