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Viewing 15 posts - 1 through 15 (of 500 total)
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  • in reply to: Her2 amplifier ICC Treatment Option #98156
    mbachini
    Moderator

    Hi Carrot,

    NCI is still accepting patients for adoptive cell treatment, but unfortunately, there still have only been about 5 successful treatments, and not any of the others were cholangiocarcinoma patients. You have to remember that for this treatment it is not about the type of cancer you have but more about your immune system and if you have mutation reactive t-cells that can successfully target tumors. They have amended this trial several times since I was the firs to have a response in this trial. For some reason, my mutation reactive t-cells live in my circulation longer than other people. The last I have heard is that they are now taking these mutation reactive t-cell receptors (about 90% of people have at least one reactivity) and engineering them in the lab by placing that receptor on younger, healthier t-cells in hopes that they survive longer in circulation to find and kill the tumors. It is always worth a call out to NCI and start the screening process, as it is a long treatment process. You first have to have enough tumor to remove surgically to harvest the t-cells and test against mutations, and then it is about a 3 month waiting period before you actually receive the cells. They try and work with your doc to continue some kind of treatment during that time frame. I hope this helps. Please don’t hesitate to reach out if you have more questions. All my best!

    Melinda

    in reply to: Now in Hospice #96003
    mbachini
    Moderator

    Definitely saying a prayer for Rosemary, and for you and your family. I am glad the hospice nurse was able to put a catheter in and that her pain is under control……many hugs and prayers coming your way.

    Melinda

    mbachini
    Moderator

    Thanks Susan for the update and information on the trial! So happy for your results!

    Melinda

    in reply to: INCB 54828 #96001
    mbachini
    Moderator

    Love hearing this news of shrinkage from all you enrolled in this trial!! Sending many prayers for continued success! Keep us posted on all the updates.

    Melinda

    in reply to: 6 year survivor #96000
    mbachini
    Moderator

    So happy for this good news. He has had his share of procedures and treatments……so glad to hear they have been beneficial to him. Love to hear these kind of stories….thanks for sharing.

    Melinda

    in reply to: from a new member #95872
    mbachini
    Moderator

    Dear Rev. Wayne,

    I too, would like to welcome you to the discussion board. I am sorry you had to find your way here, but so very happy to hear about you having surgery. I also want to encourage you to check into post surgery adjuvant treatment (BILCAP Study) with your team and see what they think. Unfortunately, this disease can have a high recurrence rate, and it is always best to cover all options. With that being said, there are also several patients who have had ongoing NED, (No Evidence of Disease).

    Three months is pretty typical for scans unless you experience any symptoms that would require taking a look earlier. Yes, you can say fart and poop on this site! Sending prayer for a good recovery and please keep us posted on your progress!

    All my best,

    Melinda

    in reply to: Introduction / Welcome #95753
    mbachini
    Moderator

    Hi, and welcome to the discussion board. So happy you joined us but sorry you are a part of this club. Happy you were able to have surgery and are doing follow up chemo, especially after the BILCAP results were so good…..please keep us posted on treatment and let us know if we can help with anything. All my best to you!

    Melinda

    in reply to: Just for fun, one really weird side effect #95750
    mbachini
    Moderator

    Oh my goodness, this made me smile so big!! I love this! Would love to see it advertised on those commercials with all the horrific list of side effects…..can you imagine? Might increase ability to accurately finish crossword puzzles!!! Thanks for the good news!

    Melinda

    in reply to: 36 year old with CC update #95749
    mbachini
    Moderator

    I know that blood clots are a common issue with our patients. I also know several who have experienced them and have gone on to do clinical trials. Hoping Kathy is feeling better and the source of the fever taken care of…hugs and prayers headed your way!

    Melinda

    in reply to: 72-year-old Mom with CCA #95748
    mbachini
    Moderator

    Welcome, Brenda. Please let us know if we can help with anything. Melinda

    in reply to: INCB 54828 #94109
    mbachini
    Moderator

    Great information everyone, thanks for sharing! You are educating me and many other patients who view this thread! Sending good thoughts and many prayers for success on this trial to all of you!
    Melinda

    in reply to: Update on NIH Trial #78784
    mbachini
    Moderator

    Dear Ellen,

    That is awesome! You are getting two great trials! Please keep us posted on both. Did you have any markers that indicated the use of Pembrolizumab? Looking forward to hearing more great results, maybe we could meet up at NIH sometime!
    Melinda

    in reply to: Tired and disapointed #91979
    mbachini
    Moderator

    I am very familiar with not wanting to slow down, despite my body telling me I am tired. Remember that just because you are resting doesn’t mean you aren’t doing anything……your body is in battle mode! Being fatigued is it’s way of rejuvenating for continued battle! Praying for great results, a returned phone call and little chemo side effects!
    Melinda

    in reply to: Floating abdominal nodule? #95474
    mbachini
    Moderator

    Catherine,

    What chemo regimen is your mom starting? I am sending lots of good thoughts and prayers her way! I am with Gavin, a minimum of 4 years!!
    Melinda

    in reply to: Cholangiocarcinoma. My Dad #92173
    mbachini
    Moderator

    I can’t add any more than what was listed above, but I can add you, your dad, and your family to my thoughts and prayers. Praying for your strength, comfort and peace.
    All my best,
    Melinda

Viewing 15 posts - 1 through 15 (of 500 total)