April 13, 2007 at 1:13 am #15581jliu168Member
Thank you to all and really appreciate all the kind posts. It is a relief to know that we can get support from each other on this website, and I think that really helps us all. JeffG, you are really an inspiration to us all, and many thanks for the words of support.
We are at the hospital later on today to do an MRI to see what the latest situation is, and will keep you all posted. Doctors have said they might change my father’s chemo regime to Gemzar / Xeloda, but that is still to be determined after the MRI.
Currently my father does not have any jaundice and exercises on the treadmill, 4.5mph for 45 minutes at 2.5% incline. He eats well, sleeps well and in perfect shape as before his surgery. He is currently supplements such as Squalene oil (Shark), and Milk Thistle. He is off the mushrooms essence supplements.
Its just so frustrating to think that all my life it seems like we can control the course of events of things, however when faced with something like CC it seems like this is one thing that is out of my control!April 12, 2007 at 3:07 pm #15580marylloydMember
I think your father’s case is much like my husbands. We are lucky because I think they probably have the slower growing and late to metastasis kind of CC.Just being stable ia a relief ! Your Dad is doing well and so is my husband with supplements and exercise etc. He is not on chemo now but if anything pops up they will probably put him on Xeloda and Gemzar also. Best of luck to you and your Dad. You are right and so is Jeff that you have to read and be informed so you can be an advocate and ask lots of questions! Take care. MaryApril 12, 2007 at 1:08 pm #15579celoiMember
My father was diagnosed June 05. The drs said after attempting surgery unsuccessful, there is nothing they could do nor chemo was suggested. After being in icu for about 2 weeks, transferred to a room to be sent home, I started giving my father supplements and bring him fruits and salad daily. He started walking a regain strength. A few months of doing this and going to the drs just to hear them say what they were not going to do, they notice him looking better and jaudice free, at that time they put in on Gemzar and Xeloda. His tumor marker CA-19-9 at one time was <2. Next time it was 4. He is stable and getting around. His biggest complaint is fatique but he has an appetite and is weighing 195 lbs. Before diagnoses he weighed 240 and lost weight rapidly. He continue supplements and healthy eating habits.
The drs are saying its ‘stabled’. Perhaps they may find a cure. We just have to keep informed and this is an excellent place to share.April 12, 2007 at 12:01 pm #15578jeffgMember
Hi Jliu168, My name is Jeff. I’m sorry to hear about your Dad. Your right this disease of CC doesn’t discriminate what -so-ever. It sounds like your right on top of treatments and procedures. Welcome to the site and if you read or see any thing of interest or would like further explanations don’t hesitate to ask. This site has been a God Send to many of us simple by sharing and answering helpful questions. Many of us have blogs and have also included our e-mails to converse directly. It is difficult to really advise on the type of treatment but we can certainly suggest some things from our individual experiences. A couple of things from me is steer the course and maintain a positive attitude to the best of your ability. “Attitude” is so Important! Stay away from the qaukery sites that claim miracle cures, Love and laugh, and review and watch for the new treatment releases and maybe consider trials down the road. I personally have made it pass the 8 year mark. I feel so arkward everytime I say that but people need to know you can live with this CC for years in a lot of cases. You said you have read a lot of posts, so you know this is not always the case and CC can be cruel and aggressive. There is a lot of little tid bits shared on this site that can be helpful when it comes to side effects also. Again, I’m sorry Your Dad was dragged on to this unfortunate roller coaster and one last thing is to be a strong advocate and don’t hesitate to speak your opinions with the Doctors. Just do your best and there is no room for guilt, CC is not our fault. Hope! … a Cure is around the corner…..
Jeff G.April 12, 2007 at 8:28 am #440jliu168Member
Hello fellow members / readers;
I have been reading posts on the website for quite sometime and only today have the courage to actually register and post.
CC is really a horrible disease and really causes much sadness in everyone’s lives. My father was diagnosed in June of 2006. Was a complete shock to us all as he is the most healthy person anyone could imagine. Although a little overweight, around 240pounds, some hypertension due to age, never even had a tooth cavity in his life and eats healthy and is very fit. My dad is a very family oriented person, and we are all so close, and now I am clueless as to how to even proceed forward as very confused and afraid of this horrible disease.
It was about a month after his 60th birthday, that my dad had plans to travel to China / Far East with my mom over the summer. He went to his GP to get a good supply of hypertension medication when the GP said for him “out of nowhere” to run a blood test. Results came back with elevated ALT / AST levels, however lower than that of a year ago. My father has fatty liver, and he thought this improvement was due to the recent increase in exercise. Again, “out of nowhere” the GP suggested a ultrasound, and the second day, my dad was called back into his office which they said they found a 5 cm mass on his liver. We were all shocked when he told us the news, and then his GP ordered AFP lab tests, which were normal. I immediately notified my doctors here and asked them to arrange a CT Scan within three days. CT Scan / MRI showed two tumors on seg 4 / seg 8 of his liver, and doctors caid they could operate, but the position was quite risky. On the 4th of July my dad underwent extensive surgery / liver segmentectomy 4+8, and doctors were able to obtain clear margins. CA 19-9 pre-op was at 91.9, and month later post-op was 34.6 with ALT/AST returning to normal levels. We thought this nightmare was now behind us and my father recovered very well until October of 2006.
On his follow-up ultrasound was normal, however CA19-9 was elevated at 128, and CT Scan showed 3 lesions, largest being 2.7cm. Doctors suggested to use RFA (radiofrequency ablation), and 3 lesions were treated with RFA. Oncologist that time suggest chemo, but we were all so afraid of chemo and refused it immediately. Nov 2006, CA19-9 drops to 80.28, and two weeks later also at 80 with some low density areas on CT. Doctors recommended follow-up, CT Scans on monthly basis, and at this time my father started taking a mushroom extract, and took it for about three months until beginning of February.
Come January 2007, CT Scan showed low density areas, but CA19-9 now at 270. PET / CT then showed 4 small lesions, and then subsequent MRI showed many small lesions on both lobes. Chemo being our only option left at this time. Oconolgist was very scary at the beginning, saying only 25% chance, but now turns out a much nice gentleman. Beginning of FEB CA19-9 jumped to 1076, so we decided to go ahead with chemo right away. Port-a-cathe was installed beginning of FEB, and oncologist recommended FOLFOX (oxaliplatin, leucovorin, 5-FU), 6 x 48 hour cycles, and 10 days in between.
Chemo has been generally easy to tolerate, with minor side effects. T Bil, was at 0.6-0.9 in betwen 1st and 4th session of Chemo. This week my father had his 5th session of chemo, CA19-9 now at 1450, and T Bil 1.3 with ALT / AST levels in 150’s (stable throughout past 3 months). We are now clueless as how to proceed forthgoing. Doctors have ordered an MRI tomorrow and suggesting possibly changing to change to GEMZAR. Am very much worried and clueless and any suggestions are welcome.
CC is really a horrible disease and cannot imagine losing my father. Have seen the many posts on this website and many hopes. I hope my father is one who can survive past the 5 year survival rate. Fingers crossed and thanks for any suggestions. Sorry for the long post, but needed to relate all the info across.
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