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  • in reply to: Cholangiocarcinoma Awareness Month #31979
    sara
    Member

    Kris – probably. I think we’re resolved that 2010 will be our year for experimenting with concept, with hopes that we’ll look polished by 2011.

    Ideally, I would like to map out something to do every day of the awareness month. Something amazing that the Colorectal Cancer Coalition does during their month is an advocacy day on Capitol Hill. We’re not ready to do that in 2010, but I think that would be a very important date for future awareness months. It doesn’t involve the international community as much, but we could organize similar “marches” in some of the global markets as well.

    in reply to: Cholangiocarcinoma Awareness Month #31976
    sara
    Member

    Thanks for posting this, Rick!! I voted for February because:

    * February is the most unique month in the year, and CC is a unique cancer
    * There are only 4 other Awareness days listed in February
    * It works well with the heavy medical conference schedule in the spring.
    * It works well with the fundraising initiative that the Foundation is about to launch to support research grants, and co-host a bile duct cancer-specific medical conference.

    in reply to: CC, Gallbladder or BLT? #32043
    sara
    Member

    Hi, Kathleen! I’m so sad that you have a reason to seek us out, but glad that you found us. We don’t have any active doctors on these boards, so it’s best to consult your treating physician regarding medical advice. However, so many in the community have been through the treatments previously, and are extremely generous with sharing their experiences.

    The National Cancer Institute (NCI) seems to have taken the position that biliary cancers are interrelated. They currently break apart cholangiocarcinoma into two major groups: intrahepatic (the portion of the bile ducts inside the liver), and extrahepatic (the portion of the bile ducts outside the liver). It appears that those with intrahepatic cholangiocarcinoma get grouped together with liver cancer, and those with extrahepatic cholangiocarcinoma get grouped together with gallbladder cancer. At least according to the NCI, gallbladder and some forms of cholangiocarcinoma are similar, so there is no doubt in my mind that you came to the right place! :)

    That being said, the NCI oversimplifies the issue…it appears that some bile duct cancers behave similarly to liver cancer, some behave similarly to gall bladder cancer, and some behave similarly to pancreatic cancer. If they were to sink some money into really classifying all the pancreato-hepato-biliary cancers, I bet we would see an even greater differentiation.

    in reply to: Sorry I haven’t written in a while #25825
    sara
    Member
    David S wrote:
    Unofficially, my PET scan was negative. My oncology nurse told me. I had also sent the CD to our daughter-in-law and she had her team’s radiologist look at it. He confirmed it was negative. Did more blood work today. Those results will be back Tuesday when we see the oncologist.

    Can this cancer be so small that the makers pick it up but scans don’t?

    Not sure what the next steps will be. I guess I will know on Tuesday. I would do another round of chemo before I would let them go back inside me

    David – to answer your question, yes. The PET scan is just one tool in the evaluation doctors perform when restaging the cancer. My understanding is that PET is known for showing false positives, so it’s important for the doctor to read the PET scan in conjunction with CT/MRI, blood work, etc. Additionally, PET is known for missing the presence of tumors, so looking at the PET alone will not provide a clear picture as to what is happening.

    It sounds like your numbers are improving, and your doctor is optimistic with the overall results. That is exciting news! I will keep sending good thoughts/prayers your direction.

    in reply to: is there anythink I can do #31623
    sara
    Member

    Your updates are perfect – please keep them coming.

    I’ve seen a few UK residents mention Prof. Lodge. Here is a link to the posting with his contact details: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9

    in reply to: My very embarrassing emotional break down. #31934
    sara
    Member

    Big hugs, Kris. I cannot even imagine how frustrating and sad today must have been for you. I have no doubt that everyone in your class will look forward to your return. You have no reason to be embarrassed, and I’m sure some of them understood what was going on.

    You have an amazing husband! Normally I would say Mexican food cures all, but I bet it’s hard to get Mexican food in Sweden! Chinese is the next best thing!! I hope the Chinese food has kicked in, and you’re snoozing away the yummy meal!

    in reply to: Am I in the right place? #25926
    sara
    Member

    Ashlea,

    This isn’t a cancer that all doctors know about. It sounds like they may be somewhat indecisive on the actual type of cancer your dad has. I agree with some of the other suggestions of going out to get a second opinion. Marion has an excellent recommendation – there are a couple of specialists at Princess Margaret in Toronto. I would see if you can have your dad’s slides and tumor blocks forwarded to them and confirm diagnosis.

    All my good thoughts heading your way.

    in reply to: Cholangio Surgeons San Francisco #25647
    sara
    Member

    Talex – UCSF is a great place to go for a second opinion. Dr. Venook is one of the highest regarded oncologists in this field. I am not as familiar with the surgeons, but I believe Marion will be able to help with recommendations. She is very familiar with the UCSF system.

    Good luck – I wish your mom did not have this cancer, but we are happy that you found us.

    in reply to: Question for everyone #24883
    sara
    Member

    My friend, Kelly, who had cholangiocarcinoma, was a big Diet Coke drinker.

    in reply to: Can I not catch a break? #24790
    sara
    Member

    Kris – could you please remind me again where your parents are located? I recall it being one of the Carolinas (I think North Carolina), but no clue on city. Are you anywhere near Raleigh-Durham?

    I wish I could help provide peace for you. I cannot imagine the feelings you are having right now. I do not think that Jeff or Peter’s skills are indicative of males only – those two men just happen to have it in spades. Maybe one or both of them will hop online and share their secrets? =)

    Big hugs to you – many good thoughts heading your way from Texas.

    in reply to: Can I not catch a break? #24783
    sara
    Member

    Kris – I’m sorry for being a bit clueless here, but did you have a surgical resection or the whipple? I cannot remember. I know others that have had the whipple that have had extreme digestive issues post-surgery. Perhaps some of your current digestive issues are associated with fall-out from the surgery? I imagine that your system is hyper-sensitive to changes at this point, and agree with the others that eating US food may have a greater impact on your digestive tract.

    American health care sucks. It’s unbelievable that simple tests end up costing so much.

    in reply to: Dr. Giles #24740
    sara
    Member

    Hi, Darla. Apologies for the delay. Historically, Dr. Giles has been very fast with his answers. However, the delay can be attributed to Dr. Giles recently moving offices, and I do not believe he has quite worked his way through the backlog yet. I think Stacie or Rick may be able to provide more information on this.

    Again, apologies for the delay. We hope to have this portion back in full swing soon.

    in reply to: First Email Sent! #24332
    sara
    Member

    Rick – thanks for all your hard work on getting that first email out to the group. Hopefully now that you’ve laid yet another foundation, it will be much more smooth and efficient in the future!

    The first email went out to ask for help in increasing funding to the National Institutes of Health (NIH), which would in turn, increase funding to the National Cancer Institute (NCI). We hope to use these regular emails as notices on how you can be involved in increasing research, awareness, education, etc. We also hope to use these emails as a means to spotlight various clinical trials, recent studies, etc. We do not wish to overwhelm anyone with information, but we do wish to increase the amount of information that is making its way to the community, and to hopefully increase the grassroots efforts that so many of you have already begun.

    in reply to: Update on my Dad #23839
    sara
    Member

    Gavin – you are such a great son. I agree with Marion – I love to see your updates and hear of the wonderful progress both your parents are making. Hopefully next time I’m in Aberdeen I will have the good fortune of heading down to Dundee and meeting you and your wonderful family.

    in reply to: Excellent Logo… #24156
    sara
    Member

    Rick is pretty cool! He waves he hands a few times at the computer screen, and magic happens! (at least that is what it looks like to me!)

Viewing 15 posts - 31 through 45 (of 185 total)