Introduction

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  • March 26, 2015 at 3:33 pm #87354
    darla
    Spectator

    Great news!

    March 26, 2015 at 2:59 pm #87353
    mattreidy
    Spectator

    Wow – fantastic!

    March 26, 2015 at 1:28 pm #87352
    sherri
    Member

    Good morning to all,
    I just wanted to let everyone know that my HMO approved me to go to MD Anderson. First try with no fighting or appeals. I can’t believe it. I am waiting on MD Anderson to tell me when to come.

    March 25, 2015 at 3:55 am #87351
    iowagirl
    Member

    Sherri, Add another welcome to your in-box. I can only echo what everyone else has said. This is a wonderful group of people tied together by the common bond…one we wish we didn’t have, but glad to have each other.

    Julie

    March 25, 2015 at 2:21 am #87350
    darla
    Spectator

    Sherri,

    First off, another warm welcome to you. You seem to be moving forward in the right direction. Everything you are doing sounds very positive. You have a great attitude and I’m sure that will keep you fighting strong.

    I’m glad you are going to meet with Matt. Although I have never met him except on this board, he sounds like a great person and I’m sure you two will get along and be of much help and support to each other.

    Looking forward to hearing more about your journey and how things are going and also about your meeting with Matt. Good luck to you and know that you have a whole lot of great people here to help and support you in any way that we can.

    Hugs,
    Darla

    March 25, 2015 at 12:52 am #87349
    lainy
    Spectator

    WAY TO GO SHERRI! I am so very proud of you, you are a very fast learner and you WILL beat this monster CC! I am also very jealous that you will get to meet Matt. He sounds terrific! Like I said, there is nothing like meeting someone from our fabulous family and I am sure you will be good friends and walk away even feeling better than you do which BTW is great. The way you took hold and are advocating for YOU is phenomenal. Another good story on why other opinions are so important. I can’t wait now to hear the rest of the story! Girl, you are not lost anymore!!!!

    March 25, 2015 at 12:49 am #87348
    marions
    Moderator

    Sherri……a tidal wave of good wishes are heading your way. Stay strong and hold on to your positive attitude. We like to say that this cancer throws us curveballs, but resilience pays off.
    Hugs,
    Marion

    March 25, 2015 at 12:31 am #87347
    sherri
    Member

    I just want to thank everyone for all the positive thoughts and good information. Since my oncologist had given me my scan results and said there was nothing else he could do, I really felt lost and alone. This board along with my family helped me get my fight back and I’ve been busy.

    1. Made contact with dr. Gores at mayo clinic. He told me to have my biopsy sequenced to see if there is a targetable mutation.
    2. Have applied to go to MD Anderson Cancer Center. Since I have an HMO I’m waiting for the insurance to approve. We will see about that but if denied my empoloyer is going to appeal.
    3. In case I can’t go to Anderson I have located a dr. Raddin here in Richmond. Taking copies of all my reports and ct scan tomorrow and have appointment on the 31st.
    4. I’m going to me Matt on Friday and get more advise and encouragement. I can’t wait

    New attitude and I to will be a survivor and one day will be encouraging others.

    Thanks to all
    Sherri

    March 23, 2015 at 5:33 am #87346
    mbachini
    Moderator

    Dear Sherri,

    I also would like to welcome you to the board. I am sorry about the results of your chemo. Did you have genetic testing done? That might be something to ask about as you are seeking other opinions. Please don’t lose hope. I have been fighting for over five years now……had resection, Gem/Cis, Gemcitabine alone, taxotere, and currently doing extremely well on an immunotherapy trial at NIH.

    Please keep us posted, and I hope you will take Matt’s offer and meet up with him, there is strength in numbers! Hugs and prayers coming your way.

    Melinda

    March 21, 2015 at 12:44 am #87345
    mattreidy
    Spectator

    I don’t know Dr. Wood at Hopkins but have seen Dr. Tim Pawlik and he is excellent.

    See http://www.hopkinsmedicine.org/profiles/results/directory/profile/0007980/timothy-pawlik?cp_doc=yes&lastName=pawlik&gs_doc=yes&jh_doc=yes&hch_doc=no

    March 21, 2015 at 12:37 am #87344
    middlesister1
    Moderator

    Matt/Sherri,

    One of the reasons I’m considering going to Hopkins if needed is that there was a doctor at the CCF conference (Dr Laura Wood) who presented on mutations and CC. This makes me believe that Hopkins should be supportive of genetic testing and may step up to fight for individualized treatments if there is a need to deal with insurance.

    https://www.youtube.com/channel/UCBa2G8qD-Fdck5kIuXgQi1w

    Matt- any chance you know her or her research?

    Catherine

    March 21, 2015 at 12:30 am #87343
    lainy
    Spectator

    Dear Sherri, welcome to our elite family and the best place to be for CC support. I am sorry that the chemo so far has not worked. May I ask where you are being treated? I would try to meet up with or at least talk to Matt. He has been around the block…so to speak. Sorry Matt, I mean around the block in a good way! First of all there is no better feeling than to meet another CC family member and I feel he can steer you in the right places. He has been there and done it. We don’t give up hope here as there are many choices now that were not here before and he have had quite a few members come in at Stage IV, told they could not be helped and are here today. Yes, it is a very scary monster and the more involved you can become as your own advocate the better it is as knowledge is our best tool. MDA Houston is great and there are also some great places I believe closer to you. Stay strong and smile as a great attitude helps immensely. Please keep us posted on your progress and know that we truly care. I hope you and Matt can meet!

    March 21, 2015 at 12:21 am #87342
    middlesister1
    Moderator

    Dear Sherri,

    Welcome to our group. Yes, there is hope. The statistics can be daunting, but it is not hopeless. My mother was diagnosed in Oct 2013 and since they couldn’t resect, she was told a year. But, she is doing great now after radiation and chemo and we have a trip planned in April for a week at the beach. However, in order to get to this point, we did have to push for an aggressive approach.

    It sounds like you’re doing the right thing- second opinions are so valuable and getting to a hospital that is familiar with treating CC. We have some members who have had great responses in clinical trials as well. Genomic testing is also opening up options for targeted treatments and trials. We haven’t had the genetic testing done for my Mom yet, but plan on pursuing it and maybe looking for a second opinion at Hopkins if needed.

    Look under the good news section. Although there is still much progress to be made, and we need it sooner rather than later, I believe we are getting close. There are drugs being developed for breast cancer and melanoma which may in the future (hopefullly soon) be used for CC as well. I am not in the medical profession, but for my mother I will ask/look/learn/explore what options are out there in addition to chemo.

    If you haven’t done so already, the main homepage has lots of information as well.

    Newly diagnosed
    :http://cholangiocarcinoma.org/the-disease/newly-diagnosed/

    I am so sorry your results weren’t good, but there is hope. We are here, we care, and please let us know how you are doing.

    Catherine

    March 20, 2015 at 11:59 pm #87341
    mattreidy
    Spectator

    Sherri,

    I’ve got excellent contacts at Mayo and Hopkins – do you have time to meet perhaps Saturday around 4:30pm at the Short Pump Mall?

    Either that or you can call me tonight between 8:30pm and 9:00pm or any time after 10am Saturday.

    My number is 804-464-7245

    -Matt

    March 20, 2015 at 11:53 pm #87340
    sherri
    Member

    Thanks Matt. Maybe we can meet soon. I’m hoping to get my records to Anderson on Monday and hope to get out there quick. This mess is spreading and I don’t want to wait. I’ll let you know if I get to go. I have found MCV and va cancer institute useless. I have been looking for trails all day that is why I reached out to Anderson. Your post about Mayo I might wait to send my records there. I guess we just have to keep fighting

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