I’m at the beginning of this frightening journey.

Sneezie

Congratulations on your clear Ct Scan. I know the anxiety you felt prior to having the scan unfortunatley I think that is just another thing we need to deal with because of the CC even though we have had resections. Have you asked your oncologist or your PCP recagarding some drugs for anxiety I personally know Xanex works for me. As far as your Dr telling u that u may not be in the 40% of 5 year survivors I don’t believe anyone can know that his or her comment may have just been thrown out there but has had a huge impact on you. I would revisit that comment with the Dr. next time I had a visit pin him or her down and ask directly why do you think that. My doctors have never given me a time frame even prognosis just that this cancer has a high reoccuence rate but in me it may or may not reoccur. I know it is extrememly hard to function sometimes with this disease you are right just put one foot in front of the other. I’am hoping that you find some peace and will be praying you receive that which you need.

Nancy

Snezzie…..Good luck on the CT scan. I am crossing my fingers and toes. No one can be certain that this cancer will return or, whether it may do so in the first place. We need time. People appear to survive much longer now than they had survived a few years ago due to better imaging tools and some great responses to various therapies. And, much more attention is given to this disease now than it ever has before. All this works in your favor. So, if you can, take a deep breath and try to relax.
I will be thinking of you, tomorrow.
Best wishes,
Marion

Snezzie – my chemo & radiation treatment was a total of 6 weeks. Basically my treatment was Monday thru Friday (5 days a week). No treatments on Sat or Sun. For those 5 days I took Xeloda pills for chemo (I believe 4 pills/day). Also for those 5 days I had radiation. Thus for the entire 6 weeks I had 30 total treatments.

These were adjuvant therapy, as in theory they had removed my entire cancerous tumor. Thus the follow-up chemo and radiation was just in case any straggler cancer cells may have been missed (or were still present).

Also, at the time (6 years ago), the doctors told me they didn’t really have any specific “follow-up” adjuvant chemo & radiation therapy for my CC. The Xeloda and radiation was thought it may help (again kind of like “insurance” for my CC).

They also told me this adjuvant therapy may only be about a 5% chance of working, or being a success. But as I had faith in my doctors and staff at MD Anderson, I decided that although small, 5% is certainly better than 0%, so I went with their recommendation.

Did the adjuvant therapy work? I really don’t know, but looking back, I’m glad I went with their recommendation. But as many have stated on this site, each person’s cancer is unique to them, and unfortunately (sadly) there is no magic bullet that all can use for CC cancers and treatments.

I wish the best to you in your treatments.

….. Dale

Sneezie,
Frightening journey indeed. But as you have seen, not a journey you must make alone. In the short time I have been aware of this website, I am amazed at the wisdom, knowledge and compassion to be found here. It helps restore one’s hope for humanity.

My ‘journey’ has been so different from most everyone here, I don’t know if I have any worthwhile information. For me it has been mostly a faith journey rather than one of intense research. I don’t know if you are a person of faith or not. I would encourage you to continue your research and in the process, ask God to give you clear direction. I hope it doesn’t sound too weird to you but I have had Him ‘speak’ to me at times when I needed to ‘hear’ from Him. At other times, I was aware of His direction through a sense of peace in the course I was following. I am at a place now of needing to get direction for the next phase of my journey. My thirteen year old surgical procedure has been in the process of failing for a few years with scar tissue causing blockages and the jondice and infection following. I am being presented with a few options, none of which seem good. So I too am needing to ‘hear’ from God. By the way, so far I have had him respond with “So Bob… Do you trust me?” Even as I am writing this post, I am praying that God will give you clear direction and a sense of His peace in your decision. God Bless…!

bob

Hi, Snezzie,
I have not posted for awhile, but you sounded like me, trying to find the “right” doctor, so I thought I would let you know where I am for now. I sent my papers to several surgeons who all told me the same, no, I would not be a candidate since it was in the bile duct and several tumors in the liver.
I, also, went to Stanford to their Liver Board and then to UCSF. I wanted an appointment with Dr. Venook, but since I could see the oncologist that takes his “over-flow” sooner and not have to wait, I made the appointment with Dr. Kelley, who had studied under Dr. Venook for the last two to three years and worked with him. My first appointment with her was in January (I had finished a round of chemo (Gemzar) and radiation from Sept. to Nov.).
I go to see her every two months after I have a CT or MRI scan. I, also, have a blood test every month. She does not want to start chemo, again, which will probably be Gemzar/Cisplatin, until the scan shows that it has started to grow, again, or until I have some more symtoms.
I went to UCLA to see Dr. Demanes about Brachytheraphy, but after seeing my MRI, he told me a couple of weeks ago, he did not think it would help me. Maybe, microspheres???? We are to have a follow-up telephone appointment July 2.
Dr. Kelley talked to the radiologist at UCSF and the head of her department and they felt the risk was too high for the reward.
I like Dr. Kelley. The only drawback is that she only works on Mondays and Fridays so it is hard to get hold of her, BUT she does return my phone calls.
When I start chemo, again, I will have the treatments in Monterey for it is closer to home than S.F. I have seen the oncologist in Monterey to make sure he would work with Dr. Kelley for I want the Gastroentrologist (liver) department at UCSF to call the shots.
Like you, I am not willing to take one doctor’s opinion.
I have been in contact with another patient that goes to M D Anderson and would like to get HoustonMom’s e-mail address.
The members on this board have been a great support. I have learned a lot from them.
I wish you the best, and will be anxious to hear what you decide to do.

Theresa