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sara

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  • sara
    Member
    elsyr73 wrote:
    what are clinical trials? who do I ask about this for my grandmother?

    Elsyr73 – you may find it helpful to watch the following video as well: http://vimeo.com/14410565

    sara
    Member

    Eileen,

    I apologize if I missed this above, but have you sent off the tumor slides to another facility for a second/third opinion? The diagnosis is critical to be sure the “virgin” cancer cells are treated with the best chemo possible on the first pass. I would pick one of the major cancer centers that routinely sees high numbers of cholangiocarcinoma, pancreatic, and lung cancer patients. I’m not sure about lung cancer, but Fox Chase, the Mayo Clinic, Memorial Sloan Kettering, and Johns Hopkins are all hospitals relatively close to you that are highly involved with pancreatic and bile duct cancers. I know that some of the institutions may tell you that they require you come in and see a doctor to get a second opinion, but historically patients have been able to push for a second opinion on diagnosis through just sending the medical records to other cancer centers. I think it may help if your husband’s oncologist makes the request.

    All our best to you and your husband.

    – Sara

    in reply to: Awareness T-shirts #49359
    sara
    Member

    To all our friends on this site – The Cholangiocarcinoma Foundation has expended a great amount of effort and publicly donated resources into developing the services and goodwill associated with “The Cholangiocarcinoma Foundation” and logo.

    We love to hear of these local efforts in raising awareness and money for the disease. We need to remind everyone that use of “The Cholangiocarcinoma Foundation” and/or our logo requires permission as these are both trade name and registered marks owned by the Foundation. We have worked closely with groups who wish to use the logo in their fundraising efforts, and we believe it’s a fairly simple process to gain permission and limitations on use of the mark. We do not wish to create any difficulty to our community, however we must protect this property that is so core to all our efforts.

    If you wish to discuss further, please do not hesitate to contact us at info@cholangiocarcinoma.org.

    in reply to: Wikipedia and cholangiocarcinoma – what do you think? #47796
    sara
    Member

    Katja – that is fantastic that y’all are in the process of raising funds for AMMF. Please keep up the efforts, as we are all in this together.

    If you have time, could you please forward a summary of how you raising money to assist research? We would love to pull together some stories to help inspire others to host local fundraisers.

    Happy Valentine’s Day!

    in reply to: Wikipedia and cholangiocarcinoma – what do you think? #47792
    sara
    Member

    Completely understandable. Wiki can be helpful in some cases, like when I need to know where Cabinda is located in Africa. However, keep in mind that anyone can edit Wiki, so the information found on Wiki is not always correct. This can be quite entertaining when you are looking at a Wiki entry for an actor or politician, however it can be quite frightening when you are looking at a disease. Instead, I usually focus on medical sites when doing searches on disease – like PubMed, the National Cancer Institute (NCI), the Mayo Clinic, Johns Hopkins, etc.

    in reply to: Spotlight on Young Investigator Award and 2010 Review #47612
    sara
    Member

    Gavin,

    Thank you so much for getting this up on the boards! We will send out an email to our distribution list as well.

    – Sara

    in reply to: Please, become involved: February is CC awareness month #47313
    sara
    Member

    Lainy – that would have been priceless. I wish you did have that recorded.

    On a side note, we have an electronic answering service for our phone number, and Google translates the messages and sends us emails. The translations are never good, but we can usually get the gist of the message. (plus there is a voice recording) Rick and I both called the number over the weekend and left messages saying “cholangiocarcinoma.” The translation for mine was funny, although I can’t recall it exactly. I’ll get Rick to send it to me so I can post it here, but it had something to do with jail. Heh.

    in reply to: I am so lost without her #46658
    sara
    Member

    Codergirl,

    I have never lost a parent, but I did lose a sibling when I was 17. I wish I had good advice for you, but the reality is that it’s hard, and only time will make the mundane tasks seem more bearable. You already said it – take one day at a time. Allow yourself time to grieve throughout the day. Recognize that you won’t be as productive in the coming days/months, and don’t beat yourself up over it. After my sister died, we found it helpful to spend all important dates and holidays on vacation. It’s not always practical, but if you can get away from your normal routine on big holidays, birthdays, anniversaries, etc, it may also be helpful for you. (particularly in this first year)

    Above all else, don’t ever hesitate to lean on those who love you. There is a community of people on this board that are here to listen to any ramblings you need to get off your chest. I imagine you also have a strong support system in your life that are desperate to help you out. Give them a call and ask for help when you are feeling lost. No doubt they will be extremely happy to be able to support you.

    Big hugs,

    Sara

    in reply to: Devoncat no more #46269
    sara
    Member

    Dear Hans,

    You gave everyone in this community an amazing gift by sharing such personal moments with us. Thank you. While the details are heartbreaking to read, your statement that Kris passed away with hope had me smiling through the tears. I’ve never had the honor or pleasure of meeting you and Kris, but you have welcomed us into your lives and feel very much a part of our families. I remember talking to Kris years ago about Kelly Lester, and how much Kris enjoyed reading Kelly’s blog because of Kelly’s sarcasm. I always felt the same way about Kris, particularly when she was asking about which cookie jar would work best. Such an amazing woman with an amazing attitude and sense of humor. I think you’re right – Heaven needed her spice to make things more interesting up there.

    We all love you very much, and wish we could be there to stand beside you in person. Hopefully the love and support coming from all over the world will help sustain you in the coming days and months.

    hugs,

    Sara & countless others who have been touched by your lives

    in reply to: Mom diagnosed with cholangiocarcinoma #45163
    sara
    Member
    marions wrote:
    Hi Michelle….a hearty welcome from me also. Additionally, I wanted to post a link establshed by our members. It is ongoing and will continue to grow, as more members share the names of their treating physicians. Good luck.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
    Best wishes,
    Marion

    Marion’s link is a great resource. The Princess Margaret hospital in Toronto is doing a great deal of work on cholangiocarcinoma in Canada. Hopefully this is an option for you. Here are a few doctors, which are mentioned in the link Marion provided:

    mlodge
    Member
    From: Toronto, Ontario, Canada
    Registered: Thu, 04 Jun 2009
    Posts: 46
    IP: 99.233.36.112
    E-mailRe: Treatment Centers/PhysiciansI am at the Princess Margaret Hospital in Toronto.

    Surgical Oncologist is Dr Alice Wei 416-340-4232, Medical Oncologists are Dr Jennifer Knox 416-946-2399 and Dr Anne Horgan, and Radiation Oncologist is Dr Rebecca Wong.

    Thanks,
    Mel

    Last edited by mlodge (Tue, 08 Sep 2009 20:09:44)

    in reply to: My dad is getting worse #36478
    sara
    Member

    Matilda,

    I agree with Marion and the others. There are ways to treat the side effects of the cancer and the chemo.

    The names of the towns you mentioned sound like they are in Italy. I imagine that the procedures may be different between the US and Italy. That being said, there are still ways to help your father fight against weight loss and address his constipation. Is there any chance you can get him back in to see his oncologist to discuss?

    in reply to: skincancer #36949
    sara
    Member

    moontje – Out of curiosity, what type of skin cancer is it?

    I would suggest discussing this further with your husband’s CC oncologist. Certain types of skin cancer are very common, and it is very likely that the skin cancer is unrelated. However, your oncologist is going to know the real answer to your question.

    My husband had skin cancer (basal cell carcinoma) in 2008, and then was diagnosed with follicular lymphoma in 2009. Completely unrelated, although both manifest in the skin. Basal cell carcinoma makes me laugh because you will see on insurance application forms, “Have you ever had cancer (excluding basal cell carcinoma)?” :)

    in reply to: Webinar #36824
    sara
    Member

    It was a great webinar. Unfortunately we had quite a few issues with the GoTo Meeting Software, and were only able to record the second half of the discussion. We’ll post the portion that was recorded, but we did miss the first half of the discussion.

    in reply to: Clinical Trial Education Series: Clinical Trials 101 #35352
    sara
    Member

    I am not sure if you guys noticed, but Rick uploaded the recorded webinar to the website: http://www.cholangiocarcinoma.org/video.htm

    Thanks again for all that attended, and we hope that this recording will be of assistance to those of you who were unable to attend.

    in reply to: Just in Shock!!! #35683
    sara
    Member
    jeffgrieder wrote:
    Well, we discussed it and he is going to wait another week to go back to work. He is still a little weak and thinks he can move mountains. For example, the China Cabinet. I just can
Viewing 15 posts - 1 through 15 (of 185 total)
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