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Chemo And Cholangiocarcinoma

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Swanbecca
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Subject: chemo and cholangiocarcinoma
Date: 04/25/2007

Hello. This is my first time to post. Infact, I just came across this site. I am the caregiver for my sister who was diagnosed with primary liver cancer in January 2007. The name of her cancer is perpheral cholangiocarcinoma. Big words for a horrible cancer. She got violently ill one afternoon in Dec. 2006. Vomiting, fever and chills, abdominal pain. She stuck it out for a couple of days and finally went to her primary care doctor. She suspected diverticulitus and admitted her to the hospital for hydration and abdominal and pelvic scans. She did have diverticulitis and was treated for that and dismissed a day later. However, the PCP called her back to her office a couple of days later and told us that the scan had shown a liver mass. This led to many many tests and consultations. We wanted a quick diagnosis and treatment plan but that is not the way it works. It was determined she had primary liver cancer which is rare. It did not involve the bialary tree and as far as they could tell had not spread. The official diagnosis is perpheal cholangiocarcinoma. In her case the liver surgeon said her liver was resectable so on January 16, 2007 she had surgery and 64% of her liver was removed. The surgeon had to take more than he originally thought he would, but he thought he got it all and pathology said her margins were good and had not spread. All of the cancer markers came back good. About three weeks later she went in for something entirely unrelated and a chest xray was done. They saw something on her spine. Here we go again. Bone scans and bone biopsy and many tests later it is determined that the primary cholangiocarcinoma has indeed metastisized to the bone. She has 2 broken vertabra at the T7 and T8 and tumors in her backbone at the T8 and T10. Thankfully, here in Wichita we are one of I believe 11 places in the nation that has something new called CyberKnife. It deliveres radiation to tumors more directly than conventional radiation. They are finding that they are having great success with CyberKnife because it deliveres a higher dose of radiation over a shorter period of time verses conventional radiation with a lower dose over a longer period of time. She had 3 treatments which is about average. We have to wait a certain amount of time to do another PET scan to see if cyberKnife has reduced the size of or completely done away with the tumors in her spine. The first PET scan revealed these in her spine and three other hot spots. One in the humerous of her right arm and two in her pelvis. At the completion of CyberKnife, her medical oncologist started chemo. Everything I have read or heard tells me that this kind of cancer is resistant to chemo. She is receiving Gemzar. She has been staged at Stage 4 cancer not curable but treatable. Well, just what does that mean? She has been through so much already... Does it mean that they are hoping that this chemo will stop any more tumors from forming? She has already told me that she thinks she has another tumor in her lower back because of the pain. They say that cancer in the bone, no matter the primary, is perhqps the most painful that there is. WE go back to the radiation oncologist later this month and I suppose another PET scan. Has anyone experienced anything similar to this? My sister and I live together at this point of our lives so I am her sole caregiver. She asked at one point what her prognosis was and was told month to month but at this point that is all anyone will say. Thank you for reading and for your responses.

Subject: RE: chemo and cholangiocarcinoma
Date: 06/26/2007

Hello, I know what you are going through my husband also was diagnosed

with cholangiocarcinoma on the 24th of Jan 07. After many tests and scans they deicided that they would operate. On feb 8 ,07 his liver was resected and he lost 80% of his liver. He felt full of energy after his op he had to wait 6wks for recovery before he could start chemo. As 2 spots turned to 5 then 10  he had 5Fu for 1wk and 2wks off after the 3rd cycle he had a ct scan and it showed that the chemo had done nothing and the cancer had worsened. He has no energy now and i feel he has giv,en up the fight. His doctor has now put him on Gemzar once a wk at 90mins for 7wks he has had 2wks of this treatment. He is very sick with this chemo or is he sick because the cancer is back and in full force. I am so frightened and so is he, he is only 37yrs old and we have 3 little children 8,6  and 4 yr old. 

Caregiver
Caregiver
Swanbecca
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Subject: RE: chemo and cholangiocarcinoma
Date: 06/26/2007

 

On 6/26/2007 Tahlia wrote:

Hello, I know what you are going through my husband also was diagnosed

with cholangiocarcinoma on the 24th of Jan 07. After many tests and scans they deicided that they would operate. On feb 8 ,07 his liver was resected and he lost 80% of his liver. He felt full of energy after his op he had to wait 6wks for recovery before he could start chemo. As 2 spots turned to 5 then 10  he had 5Fu for 1wk and 2wks off after the 3rd cycle he had a ct scan and it showed that the chemo had done nothing and the cancer had worsened. He has no energy now and i feel he has giv,en up the fight. His doctor has now put him on Gemzar once a wk at 90mins for 7wks he has had 2wks of this treatment. He is very sick with this chemo or is he sick because the cancer is back and in full force. I am so frightened and so is he, he is only 37yrs old and we have 3 little children 8,6  and 4 yr old. 


Hello Tahlia. I am very sorry to hear about your husband. My sister had 65% of her liver removed and they thought they had it all. Even the pathology showed cancer free. On her first post op check they discovere 2 tumors in her spine. They said that this particular cancer does not show up with the cancer marker tests they have now. It had already metastised to the bone. They did 3 CyberKnife treatments on her spine to relieve some of the pain but it did not get rid of them. They waited 6 weeks and started chemo- Gemzar- and she had 3 treatments. It made her so sick that she ended up in the hospital. The oncologist told her that the chemo was not helping and he felt it was doing her more harm than good. This particular cancer is resistant to chemo. She now has tumors in her upper arm and in her peivis. She had a broken shoulder and broken bones in her spine. They stopped chemo and she feels so much better now. She is in a great deal of pain but at least not that nausea and vomitting from the chemo. She was told in May that she had 3-6 months left. Hospice has been called in. Some days she is very jaundiced so I feel that her liver is involved again and she is in more and more pain too. I am so sorry to have to tell you all of this. I know that you are looking for anything that will help but I just don't have any other answers for you. Her oncologist works with Mayo and Johns-Hopkins and he didn't refer her to one of them because they just don't have any way of helping with cholangiocarcinoma. If I can answer any more of your questions I will be glad to or if you need to "talk" or vent just email me. Do you have good support from family and friends? Here in Wichita we have a cancer support group called Victory in the Valley. Do you have anything like that where you are? Let me hear from you.

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