mazduc
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I have not been on this for many weeks due to my wife’s decliding health. She has been on a trial at USC & it was stopped due to the Doctor saying it was not shrinking her tumor.
We had another visit to USC to work on the biliary drains on April 28th & come later that day. We were going to start on a new trial as soon as my wife had the strength to start again.
Unfortunately Lori passed in the morning of May 7th.
I would like to thank everyone for their support for me and my family during these past months
Wow, I just am starting the whole Hospice thing too. My wife who has PSC for many years & just found the bile duct cancer during Thanksgiving of last year.
I just talked to Nancy Slone & she was a great help. I was very sad to hear about her daughter in law.
We have been to USC on a trial med called pazopanib. After about 2 months, USC said it was not working. They said we will have to be taken off the trial. They did say that an option of using FU5 & another med would maybe work, maybe not.
So we went home to start getting, Lori my, wife strong enough to start the next step be it chemo or what ever Lori will see fit for her.
There has been a decline in her health for the past few weeks, she is not eat very much, if any. Her sick color has changed from the jaundice yellow to more gray & she is sleeping a lot. She tries to talk & it is just a light breath that is hard to understand. I know her mind is there, but her body may not be able to keep up. She is just so weak.
So I was out of ideas & have her on hospice, which I feel I have let her down & giving up! They say rough time line is a month. I am not ready for her to go & I feel to do the 4th quarter helroics. But, earlier this week, she told me that this sucks!!! That is why I went to the hospice, I could not take her into USC again, I felt she did not want to go again!
I know deep down I did not let her down, but we are to fight this until the end right. I guess the hard part is just watching her body go away and not be-able to do anything.
I guess I really can not fix her, but being a dude, I think I can. Her liver is just way too sick & it is just trying to hang in.
Lainy wrote:Dear Mark, we are glad to have you where ever you post. Welcome to our wonderful family and I am so sorry about your wife. Has the doctor explained everything to you as I don’t understand why he did not give you options. There are always options. If you are not satisfied you have the right to go for a second opinion and a 3rd and a 4th. I really don’t want your post to get lost as I know you will get many more answers. If you go to the First page and post under Introductions more people will see your post. What is the doctor telling you to do at this point? Please keep us posted and you have come to the right place, we all care!We have tried a clinical trial in a pill form Pazopanib for kidney cancer. Dr El said this would be the best to start with due to my wife’s liver.
I understand USC is very good, but the tumor is a little bigger than about 5 months ago, I do not want to just do a trial and loose a lot of valuable time in treatment.
We are being seen by Dr. El-K.
What seems to be the problem is her biliary drains, they do not seem to be working right. In a few hours, the are going to check and see what is going on with them.Dr El is going to talk to us about another treatment today, but have not seen the ducklings from USC. the fellows, resident so on and so on.
My fist post, so I do not know where to place this one, also I going to write the very quick version…
Wife is 5, has had since age 13, it looks like she also had primary sclerosis cholangitis for many years too. Had a protocolectomy with internal J pouch.
Turkey Day last year, told that she had CC. USC put 2 biliary drains due to high bilirubin levels & the trial required a steady levels. She was on Pazopanib which was hoped to work for a patient with a compromised liver.
It has not worked, the tumor has grown a little more.
So here we are… the cancer has moved outside the liver, can not have a transplant. No treatment that I have of for the wife, or am I wrong?Sorry for the manic post, I have to think of option B, another trial at USC?
What are other options?
Mark
