WLRT or Embolization?
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Thanks for the link Kirsty and I so agree with Lainy, here’s to many, many more such walks for you and your family!
Hugs,
Gavin
Dear Kirsty, I just watched the video and was surprised how young the Doctor looks. Of course today everyone looks young to me! You can tell how personable he is. Yes, all your work paid off and I hope you get to enjoy many more walks with the hand of a child leading you all forward!
► 6:00► 6:00
http://www.youtube.com/watch?v=RFHad0T-KR0
22 Mar 2013 – Uploaded by Justin Stebbing
Professor Justin Stebbing – Imperial College (NIHR Media Competition). Justin Stebbing …These are just some clips of this wonderful man I wanted to share, Can you tell I am a big fan????!!!
You know, I had a lovely walk today with my youngest (she’s 2), my husband and our dogs and just watching my little girl take her dad’s hand and look up at him , drives all of this and those long days and late nights researching, but thank you for all your kind words.
Xxx
Supermom, Can you hear me….I”m cheering you on….so impressed by you sticking to your guns and getting things done. Prof Stebbing must be someone very special. He has the right attitude…..to keep the patient around to eventually profit from better treatments to come. ANd…he’s going in with both guns blasting….very aggressive…….which IMO you have to be with this aggressive cancer. So….jumping up and down for you and your hubby…..and anticipating some really good news coming soon from you.
Julie T.
Hi Kristy, my goodness what a fabulous post to wake up too. I am so very happy for your family and you are one great advocate!. Can’t wait to hear what Brussels says and oh my goodness this is just all such good news!!! Keep the good news coming! YIPPEE!
Hi Kristy,
That’s excellent news indeed! Fingers are crossed that much good will come from all of your hard work with all of this! I forgot to post this link about SIRT that should be of interest to you.
I was at a conference here in Dundee earlier this year and the link above is the slide presentation from Dr Weir who presented at the conference. Hope it is of use to you.
Hope as well that you are having a calm Saturday and good luck with Brussels on Monday, and please let us know how you get on.
Hugs,
Gavin
Gavin I was up for hours last night and it payed off, I had some lovely emails from Addenbrookes this morning.
We have had just a massive day, Professor Stebbing just blew us away, he is the same age as us and has children the same age, we connected on so many levels, we had such a positive meeting and my husband is on great form tonight. Everything people say about him is so true, his commitment, positivity and lovely nature could make you cry.
The main things that came from today are that we HAVE been referred for SIRT from prof Stebbing, he was PRO all my ideas and wants to use some of our foundation one trial drugs too. He told my husband he is going to keep him around for some great new treatments coming along. He had just returned from Harvard and he believes the way this disease is treated in the US is the right way and that we should throw everything at it. His trump card was that he wants to look further into my husbands cancer, he finds it a ‘little’ uncharactoristic for CC so he is going to do a Gallium scan to see exactly what’s what.
Off to Brussels still on Monday.
Having a calm Friday xxxGlad to be of help Kirsty!
That’s good that you got a recommendation from Juan Valle to one of his colleagues at the Christie. My thoughts on that would be that if Juan thought it would help to see Dr Hubner then that is something that is def worth considering. Also glad to hear that you are seeking an opinion from Prof Stebbing.
You are so doing the right thing here in seeking as many opinions and options as you can for your husband here and I so hope that you get some good positive answers. And please remember to keep us all updated on everything. You know that we are here for you.
Hugs,
Gavin
Gavin you are an angel!
I had contact from Dr Valle this week who referred me to his colleague Dr Hubner, they have offered me a consultation but I am yet to arrange anything. We are meeting prof Justin Stebbing tomorrow to discuss these foundation One options so I will run all this past him too, maybe he will know. The majority of the information I can find is suitability for ICC and ours was originally From the distant bile duct even though its now gone and all we are left with is the crap on the liver.
I will work my way through you links, really appreciate this. X
NICE guidelines for SIRT for CC in the UK –
Addenbrokes as well Kirsty –
Gavin
Hi Kristy,
Have a look at these links, they might be of use to you.
http://www.england.nhs.uk/2013/11/20/sirt-comm/
http://www.ammf.org.uk/cholangiocarcinoma/specialists/
http://www.christie.nhs.uk/booklets/642.pdf
If it was me Kristy then I would contact the Christie in Manchester and see what they can offer.
Hope that helps.
Hugs,
Gavin
Thanks lovely, really appreciate it, struggling to find where we can do it our side of the pond, the doctor I have discussed it with ( who was amazing) was in minniapolis…….
Hi Kirsty,
No personal experiences that I can share with you on this topic as my dad never had this, but I’m sure that others will be along soon that can help with their experiences. In the meantime, a search here on the site for radioembolization throws up these discussion from the members here –
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1535539018
Hope some of that is helpful Kirsty.
My best to you and your husband,
Gavin
Evening All
I wondered if any of you would be willing to share your radiation experiences with me?
I having been discussing Radio options for my husband over the last few days , We do have a consultation in a few days to discuss the use of Vero but in the meantime he has been offered Whole liver radiation or Radioembolization and I wondered if any you could shed some light, good or bad experiences welcome? My husband has many ‘spots’ of disease on his liver and ultimately we are praying we can control this or push it back a little. I still feel so new to all this I would love to hear about these treatments from the ‘real’ people battling this.
Thanks so much
Love to all
Kirsty xx
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