gavin
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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
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
Will keep my fingers crossed for you Carrot! Good luck with everything and let us know how it all goes.
Gavin
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
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
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 addition to the above piece for those who may not know –
https://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/history/
Thank you all so much!
Gavin
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
Glad to be of help Johanna and I do hope you can get some help here that works for your husband.
My best to you both,
Gavin
Hi Johanna,
Welcome to the site. I too am sorry to hear what you and your husband are having to deal with right now and my dad had a lot of nausea issues as well as his CC progressed. In addition to the links that Mary has given you re nausea treatments I also have this one from the UK too –
https://www.cancerresearchuk.org/about-cancer/coping/physically/sickness
In may dads case, he went through a wide variety or anti-nausea meds and different combinations of meds to try and get some help with this with varying levels of success and failure. One of the problems that he was facing that with the vomiting , he was bring the oral meds back up before they had a chance to work for him. He eventually got put on a med for the nausea that he left to dissolve under his tongue and that worked a lot better for him. I forget what the actual name of it was but maybe you could speak with your husbands Onc or med team to see about that type of med?
I do hope that you can get some help here and with the cachexia as well. Please let us know how things go.
My best to you and your husband,
Gavin
Hi Janice,
Feeling overwhelmed with all of this is so normal, we as carers have all been there where you are right now. I was my dads carer for 18 months as he fought CC and was my mums carer for 12 years. She had COPD and passed away in Nov last year so I so know what you feel about feeling overwhelmed. Something or rather someone who may be able to help you deal with this feeling is Dr Giles and submitting a question to him. He has helped a lot of the members here and their families deal with the psychological aspects of all things CC related, caring, dealing with emotions etc and he may be of use to you just now.
Something maybe for you to think about perhaps? If so, he can be contacted through the “Ask a Question” link that can be found on this link here –
https://cholangiocarcinoma.org/for-patients/ask-dr-giles/
Mary’s suggestion of a CC mentor for you is excellent one as well, and of course, you have all of us for support too so please keep on coming back here and we will help if we can.
My best to you and your mum,
Gavin
You’re most welcome Janice. Just hope that some of that info is of use to you! Let me know if I can help any more and I sure will if I can. However, translating Japanese abstracts I will definitely struggle with!!!
Thanks,
Gavin
Hi Janice,
Hopefully those who either they or their loved ones will chip in soon to share their experiences of Gem Cis and what it all involved etc. I know that a ton of people, again either themselves of their loved ones have gone through that treatment and there are loads of posts here on the site detailing it all etc. These can be found here –
https://cholangiocarcinoma.org/db/search/gemcitabine+cisplatin/
That link above will take you to the individual postings by members here on the site regarding everything to do with Gem Cis. Hopefully you will get a load of info through that just now and here are some links for you about Gem Cis from the best and most reputable sites here in the UK.
The above links have lots of other links within them that contain a lot more info on it too. I will keep my fingers crossed for your mum and wish her every success with the treatment. Please let us know how it all goes for her.
My best to you and your mum,
Gavin
Hi Janice,
Glad to be of help if I can. Yes, the issue of accessing the full piece rather than just the abstract and having to pay the cost of it is one that crops up a lot unfortunately. Usually you can look around on google to see if there is another link which I did for you but couldn’t find one. You could try searching through this link though Janice and see if that throws anything up for you.
Hopefully something will come up there.
My best to you,
Gavin