ER visit
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unfortunately yes – metastatic disease, including even metastatic deposits within the liver itself, excludes patients from transplant at our center and at the other centers I know that do transplants for cholangiocarcinoma. The reason for this policy is that we have learned that any evidence of disease spread to lymph nodes or other sites is associated with a very high risk of recurrence after transplant.
Again feel free to contact me if other questions.
CJS
Dr. Sonnenday – thank you for the link from you interview. I was reading through the criteria, and am wondering since you mentioned that a transplant candidate doesn’t have evidence of cancer anywhere else, does that mean that if it looks like other areas have mets, then the individual automatically doesn’t qualify to be a candidate?
Sorry if this seems redundant to what you already answered via your link…
Lourdes
Lourdes:
I am sorry to hear of your father’s struggles, but am glad to hear he has been discharged home.
Your questions about transplant are excellent, and there are many misunderstandings about the role of transplant in the management of cholangiocarcinoma.
I discussed this recently in an interview that has been distributed in various forms. Here is a link:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=28992My email is included in the interview. Please feel free to contact me if you have other questions.
CJS
I just wanted to follow-up on things that have happened…dad was released from hospital on Monday and is currently on Lasix and 1200ml fluid restricted diet. He’s still exhausted which I know is common with CC, but we continue to go forward with everything that the doctors say (he has now started Xeloda, and still gets Cisplatin).
We had another consult with Liver Specialist, and he says that a transplant is not an option due to my dad having mets in the lung, and 2 tumors in the liver (along w/other nodules)… But I’m wondering if a transplant is ever an option for others? because he says he’d only seen 1 transplant w/CC patient – and that with the liver having only 1 tumor and no mets…
I’m just trying to gain more insight into options, possibilities, etc.
As always, grateful for any insight.
LourdesHi Lourdes,
Sorry to hear that your dad is in the hospital right now, but you did the right thing in getting him into ER where they could do the paracentisis and I am glad to hear you say that he is feeling a bit better now. Like Percy and Nancy have said to you, ascites is a very common side effect from CC and my dad had this as well. He had swelling in his feet, ankles, legs and abdomen as well, but he was never drained.
Here’s a link on ascites that may be of interest to you –
Hoping that your dad continues to feel better and please let us know how he gets on.
Best wishes to you and your dad,
Gavin
Hi Lourdes, My husband got ascites from cc, I think it is quite common. Luckily his never got bad enough to be drained. It seemed to go up and down, somedays worse than others. His doctor monitored it and said if it got too umcomfortable they would give him diuretics.
I am glad your dad is more comfortable now. I hope he can go back home soon.
NancyHi,
It is not uncommon to have fluid to accumulate in the abdomen ,the legs and other areas when you dad has CCA,Parcentesis can help the situation along with lasix and Aldactone .
Shortness of breath(SOB) and fatigue(yes, and you can sleep the whole day thru it,it is that tired . I sometimes have to take a nap for 2-3 hr after work and before dinner.
Sodium and fluids restriction is normal for controlling ascites . But the flip side is that the body needs fluids to flush out the chemotherapy agents esp after cisplatin adminstration so it needs to be watch closely.
God bless.Hi everyone ~
After becoming worried about my dad’s excessive swelling in the feet and abdomen, extreme fatigue and shortness of breath, and I finally convinced him to go to the ER. Luckily they did a paracentesis (we had been waiting for an IR referral), and that helped relieve his discomfort.
He’s currently being kept in the hospital…his sodium level is a little low, and they are restricting his fluid intake…has anyone had this happen to them due to CC?
On a side note…if I haven’t mentioned it before, I want to just say how grateful I am for the message boards. Having been reading and searching various things, I feel that having a collective of experiences has made me a better advocate for my dad, than if I didn’t have this site to go to.
Thank you,
Lourdes
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