You are not logged in. Please login or register.
La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Due to recent news about new cancer treatments, CCF is gathering information about your experience with genetic testing of your tumor. Whether you have or have not
had any genetic testing it is important to answer the questions to help us make progress in cancer research.
Take the Survey
Posts found: 14
Lainy, Thank you for your suggestions. My mother will see the oncologist on Friday and we'll bring it up with him. If she has other questions at that point that she'd like to ask you, I'll send you a note.
Just thought I would give you an update on my mother. Unfortunately, the CT Scan showed more small tumors in the right lobe of the liver. The doctor said it looked like the larger tumor had been "damaged" though. My mother has not been the same since she finished the dose pack after the procedure. She is very fatigued and nauseous every morning and sometimes throughout the day. She has asked the oncologist if this is due to the cancer or the procedure and he says probable both.
The radiologist wanted to go ahead and do the procedure on the left lobe also, but she decided against it since she has been so sick and it doesn't appear to have been successful on the right lobe. The oncologist told her to try to enjoy the time she has left.
My mother asked him how this would all progress and he told her she would continue to feel more and more fatigued. She would like a more complete answer and I'm not sure who to ask. I am guessing that the reason she has not experienced more symptoms in the past is because the cancer is just starting to spread in the right lobe. Is this correct?
I am so confused and don't know what to tell her. Do you have any suggestions?
Thanks to all of you for your thoughts and well wishes. I appreciate it so much! The doctor said the procedure went very well. He put her on a steroid dose pack and said that would help her feel better for the first couple of weeks. He stated she would probably begin to feel fatigued for two to three weeks after that though. She has had no side effects so far and hopefully she will skip the fatigue. She's a trooper.
She'll have a CT Scan the second week of November and we'll know more at that time. I will let you know the results as soon as we receive them. Thank you again for sharing your experiences and ideas. You are performing a great service.
Thank you so much for your reply. I just wanted to let you know how it went on Thursday. The doctor said my mother is a candidate for SIR-Sphere treatment and he feels like she should get a good response. He said he has done this on 20 - 30 CC patients and some of those patients had responded well. She has an appointment for the testing prior to the procedure on Wednesday and then the procedure will be done on Thursday. The doctor said she won't feel well for a few weeks afterwards, but then she should feel better. I hope he is correct. I will let you know how everything goes on Thursday. Thanks so much for being here for us!
Gavin, My mother has just been told that although her cancer has not spread outside of the liver, she has new tumors and the smaller ones she already had are growing. She has one large tumor that was found in August of 2011 and that tumor has remained roughly the same size with the use of chemo and radiation. Unfortunately, the doctor does not recommend additional chemo or radiation. My mother will see a doctor here on Thursday to see if she is a candidate for radioembolization. She had been going to MD Anderson until June and she was told they didn't recommend it for CC because they had not really had any success with it in CC patients. Could you please tell me if you have an opinion about the procedure?
My mother is not ready to give up, but the doctors are telling us there is little more that can be done at this point. Thank you for sharing your knowledge with others. I don't know where to turn to help my mother.
Lauren, My mother was diagnosed with cancer a year ago. We live in Baton Rouge, but they weren't sure what type it was so we went to MDA in Houston where they diagnosed her with CC. Up until June she got her scans and treatment plans there and then came back to BR for her chemo sessions. That worked very well, however, she began radiation last month and decided to have it at home and she doesn't plan to go back to Houston. She is 79 and the trip was becoming difficult for her. I hope your Mom does well and I'll be thinking of both of you.
I just wanted to let you know that my mother has only one more treatment and she has really done well so far. She is feeling better and looks better. I had no idea she could feel better so quickly. She is going to have scans in another month or so to see how the tumor has responded and I will let you know the results. Thanks for being there to share in the fears and the good news. I do realize this is only temporary, but I hope it will give her some relief for a while. She has been such a trooper.
She is not experiencing constant nausea, but her stomach feels uncomfortable most of the time. I don't even know how to explain it. She keeps saying her stomach just feels bad. We saw her doctor last week and he prescribed something new - she's going to pick it up today. I'll talk to her today about possibly postponing the radiation, but she's pretty anxious to start so I doubt she'll be interested.
I am certain she must be depressed. I think she is mourning the loss of her old self. She has always been an energizer bunny and the lack of energy and independence is extremely difficult for her. Her large tumor has not grown in the last year. She has two very small ones that appeared shortly after the large one was discovered, but they have been remained stable with the chemo. Her doctor suggested energy "shots" to try to help with her energy and weight. She has not used them yet because she hasn't felt like her stomach would tolerate them. Thank you for your replies. I'll keep you up on how things are progressing.
I'm very frustrated and appreciate having someone to listen who also has a history with this type of cancer. I am sorry that you are able to give me this information as I know you have been here at some point in time.
I haven't posted in quite some time, but I read posts pretty regularly. My mother was diagnosed a year ago this month and her cancer has remained fairly stable while she has undergone treatment with chemo. She started w/Gemzar/Cisplatin, then they put her on Zeloda which caused numerous side effects. The last treatment was 5FU with Irinotecan. Since her tumors remain stable, she will begin radiation on Monday. I don't know much about it, but my concern is her current condition. Although she has been off of the chemo for about six weeks, she has less energy and feels more nausea than she has since she was diagnosed. The doctor said earlier this week that her liver numbers were amazingly good so I don't understand why she feels this way. It makes me nervous that she is beginning radiation when she already feels sick and isn't eating as well as she had been in the recent past. Does this make sense to any of you and do you have any advice on things I can try to get her to eat while taking radiation? Thank you for any input.
I just wanted to let you know that my mother got what I considered to be a "good" report yesterday. With the exception of some slight growth in one nodule, her large tumor, other small nodule and some lumph nodes they are watching all remained stable. They are putting her on Fulfox (I think). We got in late last night and I had to work today and haven't had time to look at the paperwork again.
Her bilirubin count was good and the PA thought the itching was probably caused by oxycodone. I am grateful to all of you for sharing your experiences and offering suggestions and support.
Marion and Peggy,
Thank you so much for answering my question. My Mom actually saw her local oncologist yesterday. Since she was still experiencing the swelling, he told her to just wait until she goes to MDA next week and let them decide what to do next. I have also kept the nurse/PA/Dr in Houston aware of the fact that she was having side effects and had not resumed the next round of Zeloda. Is the buildup of the bilirubin causing the itching? Thanks for the well wishes and hugs. I could use them right now as I am nervous about our trip next week. Thank you for all you do.
I have only written once in the past, but some things have changed with my mother's treatment and I wanted to ask about additional chemotherapies. My mother was diagnosed with CC in August and she started receiving gemzar and cisplatin. After 2 rounds, the scan showed she had two small spots on her liver that were growing so they put her on Zeloda. She completed 2 rounds of the Zeloda, but began to have trouble with swelling and sores during her off week after the second round. She has been off of the Zeloda for three weeks now due to continued swelling and we will go to MDA next week for a scan/ checkup with her doctor. I guess I got the impression those were the two most widely used chemotherapies with CC, so I am wondering what they might try next. Any ideas? I'm just trying to prepare myself mentally for the visit.
My other question regards itching. I have read about itching as a symptom of CC in many places, but my mother just stated today (for the first time) that she has begun to itch. I don't think I have seen anything that explained why CC patients itch. Can anyone explain this to me and I'll let her know. She has intrahepatic CC and I thought maybe it was more common with extrahepatic. She has also never appeared jaundiced. Thank you for any explanation you might offer.
I appreciate all of your replies very much. I called my mother and read them to her also. She was very excited since she has met no one with this type of cancer and there is so little information about it.
Gavin, my mother is taking Gemzar and Cisplatin. She has tolerated it fairly well as far as side effects are concerned. However, she is extremely tired. She has never been one to sit down much and the fatigue she began to experience about a year ago is what finally prompted the tests she had in July that led to her diagnosis. When I read all of your responses to her, she asked me to ask one question. "Do most patients on this chemotherapy protocol feel so fatigued"? I realize it's not possible to compare something like this, but can you give her some idea if this is to be expected for someone who is 78? She has now had seven sessions of the chemo and it seems like her energy level goes down a little more with each one.
Thanks to all of you so much for your kind responses and well wishes. This is my first time to participate in any blog, so it feels a little strange to ask for help from people I don't know. Thank you again for all you do.
My mother was diagnosed with CC at MDA this past August. She is 78 and has a large tumor in the left lobe of her liver. Her CC is intrahepatic and she is currently taking chemotherapy in the hope of shrinking the tumor and possibly performing surgery. So far, the tumor has not grown, but it has not shrunk either. I have been reading posts on this site for some time, but I have not seen anything about how long a patient can remain on chemotherapy. I asked her doctor about it the last time we were there (she receives chemo in our home town and goes to MDA every other month), but I didn't really understand what she told us. I am very confused and hope someone can help clear this up for me.
I am very grateful for this site because I have found very little on the internet about this type of cancer.
Posts found: 14