October 7, 2013 at 3:57 am #75836pattimeltParticipant
I was in the hospital with diverticulitis and they saw a ‘shadow’ on my liver when they did the CT scan. When I got out of hospital my gastroentologist sent me for another scan which showed the tumor. then had the biopsy which diagnosed me with CC. I am stage IV. Never have had any symptoms! No jaundice or gray bowels. I had a PET scan and their is not cancer anywhere else. I haven’t had to have stents. I never wanted chemo but went ahead & did it because I seemed to have no other choice if I wanted my tumor to shrink. The gem/cis was not too bad. I was tired & nauseated but the anti nausea drugs helped that. But this last chemo combo Oxaliplatin/xeloda was awful. I don’t want to go back on it. I am a strong believer in God & feel like He will give me peace about what to do next. Right now I am glad to be on a little chemo vacation!October 6, 2013 at 6:52 pm #75835
Pattimelt, Hi, May I ask was stage you are in and where did the primary cancer start. They didn’t know my primary site. I had blood work done on Friday. All bloodwork was normal. Probably because I have two stents placed in the liver. Do you have stents? Before I start chemo I would like to know should I leave well enough alone or proceed with chemo.October 6, 2013 at 6:49 pm #75834
Hi Pattimelt, Thank you for the post! It’s difficult to believe I have cholangiocarcinoma because the only symptom I have is pressure when I eat more than I should. You mention you didn’t have any symptoms from it either! Did your doctor tell you why no symptoms? I was diagnosed late May 2013. Last night I danced to the top 40 and two weeks ago I was on the Dragster (Amusement Park Cedar Point), which was 420 feet into the air with a speed of 120. I spent the entire day walking and riding. I will find the definition of “radioembolization.” My oncologist says chemo will be
cis/gem. How are you doing now? If you could go back in time, would you have taken the chemo of cis/gem? I would greatly appreciate your opinion.October 4, 2013 at 9:34 pm #75833pattimeltParticipant
Ladylinden, it seems like everyone on here reacts differently to treatments. My CC was found by accident a year ago. I have never had any symptoms from it. I felt fine until I started treatment. 1st I had radioembolization twice. Them did gem/cis for 2 rounds. These did not shrink the tumor so started oxaliplatin/xeloda for 2 rounds. I have been really sick on this. Now we are waiting for my next MRI to see if it had any affects on the tumor. I still have no symptoms from the cancer. My oncologist said she may put me on ‘chemo vacation’ and keep a close eye on the tumor. My oncologist said it isn’t fast growing. I have to decide at some point what will be best for me.October 4, 2013 at 3:45 pm #75832
Ladylinden, my husband is stage 4. No other organ involvement besides the liver. You can read all the details under the new member section. Dr told Ron that his cancer cannot be cured and if he chose not to have chemo he would only live 6 months or so. CC is a very fast growing cancer! Ron started gem/cis and has been doing great….. much improved. Before chemo he was nauseated and had abdominal pain. Now that is gone and his tumor is shrinking. He has new scans in 2 weeks. I strongly recommend starting treatment.October 4, 2013 at 3:18 pm #75831
Has anyone on this site refused chemo for cholangiocarcinoma/bile duct cancer. I would appreciate hearing from you and how things are going for you. THANK YOU.October 4, 2013 at 3:13 pm #75830
Hi Snowbird, I notice you are a new member. Welcome to the website. It is very helpful. May I ask what stage of cancer does your husband have. I have not received chemo but Gem/Cis were the recommended drugs. I was diagnosed late May 2013. I have an oncology appointment today to discuss pain management. I am strong except for some mild back pain. May I occasionally contact you regarding your husband’s treatment and how he is doing. I just may go with Gem/Cis if I heard more favorable results. I welcome any comments from members who have experience with this cancer chemo treatment. My dilemma is I FEEL GREAT NOW, it’s difficult to believe I have cancer. I am afraid of chemo and the affect it will have on me.September 26, 2013 at 2:34 pm #75829
Thanks, Jason. That is reassuring.September 26, 2013 at 5:04 am #75828jscottMember
When my wife first started Gem/Cis, the oncologist told us that the CA 19-9 could spike. Apparently dying cancer gives off a burst of CA 19-9. I went back and checked, and indeed Andrea’s CA 19-9 went up 50% after the first cycle. The CA 19-9 did not get back to the original number until the 3rd or 4th cycle.
Andrea has actually had a really strong response to chemo (and CA 19-9 after 8 cycles is half the starting level).
I wanted to let you know it could be a good sign too. If the other numbers are getting better and Ron is feeling good, those are great signs as well.
JasonSeptember 26, 2013 at 2:04 am #75827
Marion – Ron’s doctor has not done a new scan yet. He is basing the amount of shrinkage by feel and visual observation. All other blood tests were good, except one liver enzyme was higher (AST) and his hemoglobin dropped. Ron feels great. Dr. says that since Ron is doing so well (blood tests and healthwise), he is increasing the Gem/Cis to 3 weeks on/1 week off instead of 2 weeks on/1 week off. New scans are scheduled for Oct. 21st. (Initial scans were completed on Aug 5, 6 & 9th. Biopsy Aug. 15th and chemo started Sept 5th.)September 26, 2013 at 1:48 am #75826marionsModerator
Snowbird…I recall you mentioning that your husband has received 2 cycles so far. Had a scan confirmed shrinkage proceeding the 1st treatment? I would contact the physician and request an explanation as to why he/she thinks that the treatments are achieving positive results. We have learned that other physical changes can cause these markers to rise however; I would want this confirmed by the doctor.
MarionSeptember 26, 2013 at 1:21 am #8931
I’m wondering what to think of the CA 19-9 lab results.
8-5-13 – First onset of symptoms with a vist to the ER.
8-21-13 – Diagnosis of CC. CA 19-9 was completed with a result of 3730.
9-5-13 – 1st Chemo treatment (Gem/Cis)
9-12-13 – CA 19-9 drawn before 2nd chemo treatment
Dr. says chemo is working and tumor is shrinking
9-25-13 – Dr. says chemo is working well and tumor has shrunk at least an
inch. Result of CA 19-9 drawn on 9-12-13 is 9840.
3rd chemo treatment is administered
Any ideas on why the CA19-9 nearly tripled in just 2 weeks and after 1 chemo treatment? Should we be concerned? Dr. never mentioned the results of this test today. I asked the nurse in the Infusion Center to look it up for us.
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