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Viewing 15 posts - 31 through 45 (of 6,118 total)
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  • gavin
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    gavin
    Moderator
    in reply to: Yeliva #98470
    gavin
    Moderator

    A google search throws this up for you W.

    https://www.google.com/search?q=yeliva+cholangiocarcinoma&rlz=1C1ASUM_enGB770GB770&oq=yeliva+cholangiocarcinoma&aqs=chrome..69i57j69i60l2.5791j0j7&sourceid=chrome&ie=UTF-8

    Gavin

    in reply to: Yeliva #98469
    gavin
    Moderator

    Hi W,

    Yes there does seem to be a lack of first hand reports of it as you say, but I am hoping that someone or their loved one has or is doing this treatment. But, I can’t recall off the top of my hand if anyone actually is or what there username was. I know it has been mentioned a few times and the search link I gave throws them up with some other links in the postings. Hoping someone can come forward to share experiences if they have them. Fingers crossed for you.

    Can anyone chime in here?

    Thanks,

    Gavin

    gavin
    Moderator

    Hi there,

    Hopefully someone will have experiences etc to share with you about this trial, although I have none. This is the trial here is it not?

    https://clinicaltrials.gov/ct2/show/NCT02821754

    Thought I would put a link to it on the boards as it may help people recognise it.

    I did a search of the boards for the drugs used in the trial as thought that may be of help to you and came up with these links –

    Tremelimumab –

    https://cholangiocarcinoma.org/db/search/Tremelimumab/

    Durvalumab –

    https://cholangiocarcinoma.org/db/search/Durvalumab/

    Hope some of that is of use and I keep my fingers crossed for your husband for the best possible outcome to the trial.

    My best to you both,

    Gavin

    in reply to: Yeliva #98453
    gavin
    Moderator

    Hi W,

    Yes Yeliva has come up on the boards and been discussed before and I think a few of the members here have some experience of this. Hopefully they will chip in soon with their experiences of it. In the meantime, I did a search of the boards for you and come up with this –

    https://cholangiocarcinoma.org/db/search/yeliva/

    Hopefully you will be able to get more info from the links and discussions contained in the link above.

    My best to you,

    Gavin

    gavin
    Moderator

    Hi Hannah,

    Glad to be of help to you and yes, this is a really interesting and important study IMO. You are so right about what you say re smaller hospitals and patients being initially told that their CC is unresectable and not being able to be candidates at some point for possible surgery after chemo etc. I guess that this just goes to show once again that it is so much better for patients to be treated by onc’s, surgeons etc that have a lot of experience in dealing with and diagnosing all aspects of CC, treatment etc.

    Much work still to be done on everything and never ever give up hope!

    Thanks Hannah and my best to you and your mum,

    Gavin

    gavin
    Moderator
    in reply to: Dad recently diagnosed #98263
    gavin
    Moderator

    Hi Laura,

    Welcome to the site. Sorry that you had to find us all here and sorry to hear what your Dad is going through now. But I am glad that you have joined us all here as you are in the best place for support and help  and I know you will get a load of both from all of us here. Thanks as well for letting us know what you and your dad are dealing with here. I know how you feel as I felt the same when my dad was diagnosed back in 2008 and I came here too feeling like you do now. I’d never heard of CC until we got the news that my dad had it and I am guessing that that was the case for you as well.

    You are doing the right thing in learning as much as you can about all of this as the better informed you are the better placed you will be to help your dad to deal with everything about this disease, treatment options included. There is a ton of info here on the site so please use that and do not be afriad to ask questions, there are no silly questions at all!

    I hope that the insurance comes through very quickly and that you can get that app at MD Anderson and you will be in good hands there. Please just make sure that all of your dads med team are highly experienced in dealing with CC and patients with CC. Many are not that experienced and you want to be with those who do have lots of relevant experience to say the least! Keep coming back here Laura and let us know how everything goes.

    My best to you and your Dad,

    Gavin

    in reply to: Oregon family #98259
    gavin
    Moderator

    Hi Hannah,

    Thanks for the update on your mum after the surgery and what great news this is indeed! Thanks loads for sharing that with all of us here and I know that that will give hope to others as well. I too hope that your mums recovery goes smoothly, a few steps at a time with everything, food, walking etc but she will get there. You both must be well chuffed with the outcome here! Fingers crossed for you both with everything from here and please keep us updated on everything. And what a great use as well for cling film, as we call it here in the UK!!

    My best to you and your mum,

    Gavin

    gavin
    Moderator

    Hi Mary,

    Glad to be of help as always and thanks loads for bringing up the specialist map as well for you folks in the USA as well. I totally agree with what you say re patients and the importance of having surgeons, oncs and everyone really that is involved in a patients med team being experienced in treating, dealing with and diagnosing people with CC. As you say, the larger major treatment centres will be best for people to go to find people with that experience and knowledge etc.

    For newcomers to the boards who might not know as well, we have some threads and boards that are also of help.

    Hospitals and physicians –

    Hospitals & Physicians

    Treatment centres thread too –

    Treatment Centers/Physicians

    Thanks loads Mary!

    Gavin

    in reply to: For Cholangiocarcinoma Patients, Mutations Matter #98248
    gavin
    Moderator

    And please take a look here as well.

    Provider Portal

    A load of info and a video here as well. Lots of links with very important information as well and also, some of Matt’s story is on here too!

    Please take a look everyone.

    Thanks,

    Gavin

    in reply to: Oregon family #98217
    gavin
    Moderator

    Hi Hannah,

    Welcome to the site and thanks loads for “delurking” now! Thanks for sharing what is going on with everything for your mum. I am sorry that you had to find us all here but glad that you have joined in and posted now as I know that you will get a ton of help and support from everyone here, Glad as well to hear that when you were lurking that you still got a lot from the boards in terms of support and help too. That is good to know. So to all the other lurkers out there, please come and join us, say hi and know that we don’t bite!!

    Thanks for sharing everything that is going on right now and from what you say your mum is going through a lot with everything. You are so doing the right thing in seeking to learn as much as you can about everything CC related as the better informed you are about it all the better you will be able to help your mum. And yes, you are well on the way to your 2nd PHD now! Keep coming back Hannah and let us know how everything goes. You’re not alone in this now.

    My best to you and your mum,

    Gavin

    in reply to: 2019 Cholangiocarcinoma Foundation Annual Meeting Videos #98216
    gavin
    Moderator

    Hi Tilly,

    Yes, huge thanks to all that were involved in all of this, the conference and getting the video’s up and online so fast. I’m guessing that Rick played a huge hand in getting the vids up and running so quickly! But if I’m wrong I am sure that he will correct me! I love seeing all of the videos each year and is great to see everyone there and put names to faces as well. I like the highlights one as well with the music each year too.

    Thanks Tilly,

    Gavin

    in reply to: World Cholangiocarcinoma Day #98213
    gavin
    Moderator

    Going Green! Love it!

    Last week several building across the country were turned green for Awareness Month. A BIG thank you to those who contacted their cities to make these happen!

    Last week several buildings across the country were turned green for Awareness Month. A BIG thank you to those who…

    Posted by Cholangiocarcinoma Foundation on Sunday, February 24, 2019

    Superb! It’s not too late to purchase your Awareness Lightbulb for Awareness Month!

    https://store.cholangiocarcinoma.org/green-light-bulb.html

    Huge thanks to all, great stuff!

    Gavin

Viewing 15 posts - 31 through 45 (of 6,118 total)
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