mbachini

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  • March 24, 2015 at 2:26 am in reply to: My Introduction #80317
    mbachini
    Moderator

    Matt,

    I was one that never had the rise in that marker…it stayed normal even when my tumor was huge in my liver. The only time it went way up was as you described in the above article…after my immunotherapy treatment and the tumors were shrinking.

    Melinda

    March 24, 2015 at 2:19 am in reply to: anyone with a reoccurence after resection PLEASE SHARE YOUR EXPERIENCE #87391
    mbachini
    Moderator

    Daisy,

    I had a recurrence 3 months post resection with metastasis to my lungs. I did Gem/Cis chemo for 6 months, Gemcitabine alone for about 3, and then Taxotere for another 6 months before finding the immunotherapy trial at NIH.

    Seek a second opinion if need be and continue to ask questions. You are a great advocate for your mother. Sending hugs and prayers your way!

    Melinda

    March 23, 2015 at 5:33 am in reply to: Introduction #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 20, 2015 at 4:43 pm in reply to: 2nd opinion #87308
    mbachini
    Moderator

    Balwas,

    I can’t really help with your decision but feel they are both great choices. I went to Mayo in Rochester about 5 years ago for a second opinion myself when metastasis to my lungs showed up 3 months after my resection. At the time they suggested the Gem/Cis chemo regimen for me, which was the same as my oncologist back home. It is always good to get a second opinion, thoughts and prayers sent your way.

    Melinda

    March 17, 2015 at 7:11 pm in reply to: Treatment following reoccurrence #87323
    mbachini
    Moderator

    Daisy,

    I had a resection in December 2009, with a reoccurrence in my lungs in March of 2010. I wanted to initially go straight to a clinical trial but my insurance wouldn’t cover it so I did the Gem/Cis for about 6 months until toxicity set in from the Cisplatnin. I then did Gem alone, in which tumors started to grow. …..after that I did about 6 months of Taxotere until toxicity got to me once again. I then found on my own the immunotherapy trial at NIH….I did all the work, but agree with Marion that if your physician is on board it helps so much to have them involved in pursuing the clinical trial.

    Melinda

    March 17, 2015 at 7:02 pm in reply to: Hilar Cholangiocarcinoma #81730
    mbachini
    Moderator

    Dear Ruali,

    I am so deeply sorry for the loss of your mother and brother. I can’t imagine how painful it is to lose two family members so close. Please know that I am praying for strength, comfort and peace for you and your family…..hugs to you.
    Melinda

    March 17, 2015 at 3:00 am in reply to: 2nd opinion #87305
    mbachini
    Moderator

    Dear Balwas,
    Welcome to this site, and sorry you had to find us. I am sorry about your wife’s diagnosis.
    The following link has a list of major hospitals who have Tumor Boards and Multi-disciplinary teams……
    http://cholangiocarcinoma.org/for-patients/major-cancer-centers/
    this would be a great place to start looking.

    I would also encourage you to post in the introduction section, so others would have a chance to jump in on this topic as well. Please know we are all here to support you in anyway we can. Take care.
    Melinda

    March 17, 2015 at 2:47 am in reply to: Patient perspective story at CCF conference 2015 #87259
    mbachini
    Moderator

    Thanks Darla!

    March 16, 2015 at 8:04 pm in reply to: Patient perspective story at CCF conference 2015 #87257
    mbachini
    Moderator

    Here is the link to the video…. and all the other videos from the conference.
    https://www.youtube.com/channel/UCBa2G8qD-Fdck5kIuXgQi1w

    March 13, 2015 at 1:48 am in reply to: Patient perspective story at CCF conference 2015 #87253
    mbachini
    Moderator

    Wow, not sure, it was there earlier today.

    March 12, 2015 at 6:21 pm in reply to: My One Year Mayo Clinic Report #87197
    mbachini
    Moderator

    Julie,

    I am beyond happy for you! Such great news! Now you can breathe easy and get ready to spoil the newest grand baby!! Lots of hugs sent your way!
    Melinda

    March 12, 2015 at 6:15 pm in reply to: 4.5 years! #86661
    mbachini
    Moderator

    Wonderful news! Enjoy your family everyday….so many blessings!!

    March 12, 2015 at 6:03 pm in reply to: Introduction, father with GB cancer #87153
    mbachini
    Moderator

    Dear Onlyone,

    I have been involved in the immunotherapy trial at NIH for the past three years, unfortunately it does require travel to Bethesda, Maryland. I still would highly recommend giving them a call and asking if there might be trial recommendations near you! The link to my trial is here and there is a contact number at the bottom of the page. Hope this helps!

    http://www.cancer.gov/clinicaltrials/search/view?cdrid=683241&version=HealthProfessional&protocolsearchid=11220695

    Melinda

    March 12, 2015 at 5:42 pm in reply to: My Introduction #80298
    mbachini
    Moderator

    Dear Matt,

    I recall being in a fog, sometimes I still am, for about the first couple days after chemo. I continued with the antiemetic meds for about the same couple of days, which they always make me groggy. Then I was okay until the next chemo. Hang in there and keep up the positive attitude! Sending thoughts and prayers your way!
    Melinda

    March 12, 2015 at 5:25 pm in reply to: My Brother Diagnosed with Cholangiocarcinoma #87184
    mbachini
    Moderator

    Dear Henrietta,

    I also would like to welcome you to this site and thank you for sharing your brother’s story. What a story it is….one of never giving up! I will add him to my prayers, and certainly pray for a clinical trial that will show amazing results for him! Please keep us updated on his progress!
    Melinda

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