gavin

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Viewing 15 posts - 31 through 45 (of 6,107 total)
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  • 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

    in reply to: Frank Fighting CC #98212
    gavin
    Moderator

    Hi Frank,

    Good to see you back on here and thanks for telling us a bit more about things with you.  Sorry to hear that you are not feeling too good right now and hopefully things will pick up for you very soon. Have you tried the search forum function on the boards to see what posts there are on neuropathy as I am certain that there are quite a few by the members here?

    I have some links for you on this subject should you wish to read about it.

    https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/other-side-effects/peripheral-neuropathy.html

    https://www.macmillan.org.uk/information-and-support/breast-cancer/coping/side-effects-and-symptoms/late-effects-of-breast-cancer-treatment/peripheral-neuropathy.html

    https://www.maggiescentres.org/cancerlinks/living-cancer/coping-symptoms-and-treatment/peripheral-neuropathy/

    https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/side-effects/nerve-changes

    I hope that some of these are of use to you Frank and please let us know how things go for you.

    My best to you,

    Gavin

    in reply to: Latest scan results #98211
    gavin
    Moderator

    Hi Brigitte,

    Thanks for letting us know how things are going and good to hear that the Gemzar is keeping things from spreading. I hope that all goes well with the app with the rad onc and that things can get going with that quickly. I hope too of course that it works very well indeed and I will keep my fingers crossed for the best possible outcome with everything.

    My best wishes to you,

    Gavin

    in reply to: Infection after y-90 #98188
    gavin
    Moderator

    Hi Daisy,

    Thanks for the update on your mum and I am so sorry to hear of what she is going through right now and having to deal with. I found this link that may be of interest to you –

    https://www.cirse.org/patients/ir-procedures/radioembolisation/

    “Less common complications include a build-up of fluid, high levels of alkaline phosphatase and infection.”

    Maybe this is something that your mum is having to content with right now? Here is another link as well that is quite detailed and technical though which I hope may help too –

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4114299/

    The pain that your mum is going through right now really should be looked into and dealt with if possible as this will be getting her down a lot as you say. Pain should be able to be handled by medication and I would definitely keep on at her med team to sort this asap. I too hope that the antibiotics work very quickly and that hopefully your mum will feel a lot better soon.

    Thinking of you both,

    Gavin

    in reply to: 2019 Cholangiocarcinoma Foundation Annual Meeting Videos #98187
    gavin
    Moderator

    If you click on the top link it takes you to the youtube page for the meetings then you can scroll down through the options on the top right of the screen to see all of the other individual videos for different topics that were discussed and presented at the meeting. A lot of information there for patients and carers etc.

    Please take a look.

    Thank you,

    Gavin

    in reply to: Her2 amplifier ICC Treatment Option #98152
    gavin
    Moderator

    Will keep my fingers crossed for you Carrot! Good luck with everything and let us know how it all goes.

    Gavin

    in reply to: World Cholangiocarcinoma Day #98146
    gavin
    Moderator

    What a great day for raising awareness into CC!

    Global Cholangiocarcinoma Alliance‏ @CCA_Alliance
    Thank you – what a brilliant international effort to raise much-needed awareness of #cholangiocarcinoma. Look what we achieved as a community, here are some of the top #cholangiocarcinoma influencers from February 12, 2019 #CancerAwareness

    Huge thanks to all from all over the world today!

    Gavin

    in reply to: Her2 amplifier ICC Treatment Option #98145
    gavin
    Moderator

    Hi Carrots,

    I will try and find out about this for you and get back to you on this. Will get in touch with Melinda as well.

    Thanks,

    Gavin

    in reply to: Knowledge is Power – Please have a Read. #98144
    gavin
    Moderator

    Video from the ABC piece today, please watch!

    Knowledge is Power from KTVX (ABC 4 Utah)

    Thank you Stacie, Melinda and Kristin for this.

    Gavin

    in reply to: Knowledge is Power – Please have a Read. #98142
    gavin
    Moderator

    Glad to be of help Carrot!

    My best to you,

    Gavin

    in reply to: Knowledge is Power – Please have a Read. #98139
    gavin
    Moderator

    In addition to the above piece for those who may not know –

    https://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/history/

    Thank you all so much!

    Gavin

    in reply to: Frank Fighting CC #98127
    gavin
    Moderator

    Hi Frank,

    Welcome to the site! And yep, Mary is right in that you are posting on the correct page for introductions and all that. But to be honest, you can post where you like really and feel comfortable doing so please do not worry about that at all. And, if you post something that you thought was in the wrong section for the topic then no problems as I can move it for you to another section. Looking forward to hearing more from you Frank.

    My best wishes to you,

    Gavin

Viewing 15 posts - 31 through 45 (of 6,107 total)
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