Discussion Board Forums Introductions! I’m at the beginning of this frightening journey.

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  • #38907
    lalupes
    Participant

    I’m so upset about your Stanford Onc’s attitude, Snezzie – that is not what you need. I wish you the very best of luck with your scan & am hoping a good result will help reduce your understandable anxiety.

    Best wishes
    Julia

    #38906
    lulu07
    Participant

    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

    #38905
    snezzie
    Member

    Marion,

    It was clear. I somehow have to learn to put one foot in front of the other….until I know something different.
    Thank you for your kind words. And of all the other caring people that have posted to me.

    My new Oncologist said to “expect the worst and hope for the best”…………not sure that I can do that, but I’ll try.

    Snezzie

    #38904
    marions
    Moderator

    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

    #38903
    snezzie
    Member

    Marian-thank you for your post. I will try to calm down. A Stanford Oncologist told me that it WOULD ( not might) return in 1 year’s time and that I “certainly will not be in the 40% 5 year survival group” Her words–not mine.
    My Kaiser oncologist on the 1st visit said “that it may not reutrn at all” and that I am overly anxious. But on the 2nd visit 3 weeks later, he said “in the time that I have left…he wants me to be comfortable”.
    What changed between those 2 visits?
    I think he read up on CC—which is why I want to see Dr Venook @ UCSF–
    Thanks very much, my second CT scan since the surgery is tomorrow and I think that’s why I am so anxious.
    Snezzie

    #38902
    dmeek
    Participant

    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

    #38901
    marions
    Moderator

    Sneezie…..I wonder whether you are fretting too much something so very understandable. . You have had the resection and are now on adjuvant therapy. Does it consist of 6 cycles? You may very well respond favorably and avoid an occurrence by staying on the current regiment. I would assume for the Gemzar to stay as presently ordered and for the Xeloda to be replaced if, at all. As mentioned by one of the physicians, the Cisplatin may be used at another stage. I do no know of any absolute in the choice of adjuvant therapy. There are not many drugs in use when it comes to the treatment of this disease and responses vary from person to person. You are so very fortunate to have had the resection and you have recovered so well. For all we know…you have been cured.
    That is what I wish for.
    Marion

    #38900
    snezzie
    Member

    Dale–Thank you, thank you for your post.

    Please, can you tell me how long the Radiation treatment was?

    Kaiser has refused my request for a second opinion @ UCSF. I must now spend precious time filing an application for an independent review with the state of California and waiting for the outcome.

    It’s terrible for a patient to have to deal with this as well as the situation itself.

    So, thank you again–your post was a small ray of hope.

    Snezzie

    #38899
    dmeek
    Participant

    Snezzie, welcome to the site. I’m sorry you’re having to make these decisions. I agree with others that even though we have CC, all cancers are different and in recommended treatments. I just wanted to add my thoughts and story ….

    I was diagnosed with intrahepatic CC in 2004. Mine was Stage 2, with a 4.5cm tumor. I had a liver resection with 75% of my liver removed. The margins were “clear”, but they were only 1mm clear. They recommended follow-up chemo and radiation, just to be safe and sure, in case they had not gotten everything. I had 6 weeks of Xeloda (pill form) and radiation.

    I am now basically 6-years cancer free. I also had all my treatments at MD Anderson in Houston, TX, and I can personally recommend it is a great cancer center.

    I pray the best to you in your decision, and treatments.

    …. Dale

    #38898
    32coupe
    Participant

    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

    #38897
    lainy
    Participant

    Theresa, I would just like to say that I think you are wonderful! You have done this doctor research business like a real pro. Something good has to come out of the way you went about this and we, of course, are wishing the best for you. Good luck and please keep us in your loop.

    #38896
    rowena32
    Member

    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

    #38895
    katieloumatt
    Member

    Thanks Snezzie,

    My parents live in Florida and Dad had all his treatment at Shands hospital in Gainesville, Fl. I spent much of last summer over in Fl supporting my Mum through Dad’s surgery and then his passing…

    Hope you get to Bolton, sure you’ll be surprised at the changes. Once again wishing you strength on your journey with cc….

    Katie

    #38894
    snezzie
    Member

    Hi Katie,
    Thank you for your message. I am very sorry about your Dad.
    I am originally from Bolton, and I do plan to go back for a visit soon.

    #38893
    katieloumatt
    Member

    Hi Snezzie,

    Please can I join everyone in welcoming you to a wonderfully supportive, informative site. Here you will hopefully find the knowledge and advise to enable you along with your doctors to make the choices and decisions right for you.

    Unfortunately, I do not have anything further to add, my Dad had an intrahepatic cc that was unsucessfully resected last year….

    Wishing you all the best,

    Katie

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