gavin
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Hi Sally,
Great to hear from you again and thanks for the update on your sister. Enjoying more time together and planning that trip sounds like a great idea to me, enjoy it all!! Hope that the news from the next scan is good and please keep us update on things if you can.
My best wishes to you and your sister,
Gavin
This is great news if it works and pharma companies can be forced to publish the results of current and past trials. Time will tell; if it can be done of course but I guess if it was going to happen then perhaps it could work in Europe if the EU were to legislate for this? Just a thought, but I am guessing that if anyone was going to legislate for something like this then it would be the EU before the USA would. We all know how much the EU like to put things in law!
Thanks for this Marion.
Gavin
http://www.nature.com/news/who-calls-for-full-disclosure-of-clinical-trials-1.17331
Hi Emma,
I wish I could help you with this decision that your mum has to make but my dad never had chemo so I can’t really help too much on this issue. He was offered chemo or PDT after his diagnosis, his cc was deemed inoperable so he chose to have quality of life over quantity for the time that he had left and felt that the PDT would be abetter choice for him rather than chemo.
This choice is one that is tough for someone to make and my own thoughts are that the person making the choice should do whatever they feel is right for them. I said that to my dad at the time and told him that I would support him in whatever choice he made, and I did support his decision totally.
Chemo can be stopped at any time should your mum start it then chose to stop, it is totally her decision no matter what she has signed up to. Maybe you could try and speak with the onc on your own if your mum agrees to that so that you can ask all of the questions that you want without your mum being there? Just thinking out loud here.
I know this is such a tough time for you right now Emma, I was where you are now with my dad too so I know what you are going through. Keep coming back here, we are here for you.
Hugs,
Gavin
Hi Judith,
Sorry to hear about this and I know how much your are struggling right now with all of this. Let me just say that that stuff about them allowing Mary home is nonsense, complete nonsense! They can advise that Mary stay in hospital, they can strongly advise the same etc or they can advise about this that and the nest thing, but they can not tell you or Mary that she must do something.
The part about getting social services into your home to check things out to see if Mary would be able to cope with living at home is one thing and that is common, but they will not be able to say she CANNOT come home because of the living arrangements. If adaptions to a home are needed such as railings put in, new beds etc then that will be done if needed, that is commonplace and my mum has had that done to her flat as well.
Did you speak with Prof Valle today about everything and if so what did he say?
A MacMillan nurse will be invaluable to you both and I strongly recommend that you get their services now. Prof Valle or the GP will be able to make that referal for Mary if it has not been done so already.
Please do not think that you are not doing your utmost for Mary already, you most certainly are. Keep coming back and now that we are here for you.
Hugs,
Gavin
Thanks for that Judith. Hope that Mary gets home real soon and please keep us updated on how things go with everything.
My best wishes to you both,
Gavin
Hi Donnie,
Great to hear from you! Real glad that you are off to Edinburgh today and hope that you get some good news whilst there. Fingers are crossed for you on this! Sorry to hear about your hospital stay, but that is great that they found the problem and sorted it for you. Hope that these bili numbers keep dropping as well now.
Yes you certainly are fighting this with everything that you have and I’m loving this fighting attitude that you have and the whole not taking no for an answer, good on you! Please let us know how things go today and hoping that the yellow tinge fades away too!
My best to you and Lorraine,
Gavin
Hi Judith,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what Mary is going through right now. But I am glad that you have joined us all here as you are so in the best place for support and help and you will get loads of that from all of us here. If we can help in any way we will, just ask and we will do what we can.
As Lainy says, I too am from the UK, Dundee up here in Scotland and we have many members here on the site who are from the UK. My dad was diagnosed back in 2008 here in Dundee and was also treated here as well with PDT.
You are so right what you say about the Christie in Manchester. It is well known throughout the UK, Europe and the USA as well. Can I ask who Mary’s oncologist is at the Christie, Is it Prof Juan Valle? If so I would say that Mary is in very good hands indeed with prof Valle. Prof Valle is the Vice Chair of the Medical Board for the Cholangiocarcinoma Foundation and has much experience in dealing with patients with CC.
http://cholangiocarcinoma.org/juan-valle/
I do have a few UK specific links that will be of interest to you and Mary. Have you heard of AMMF in the UK? It is the UK’s only specific webiste and charity for CC and it can be found here –
You will find a lot of UK specific info there regarding other major treatment centers and treatment options.
http://www.ammf.org.uk/cholangiocarcinoma/treatment-options-2/
http://www.ammf.org.uk/cholangiocarcinoma/guidelines-for-diagnosis-and-treatment-uk/
http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/
Helen who runs AMMF is a gem and I am in touch with her frequently about lots of things CC related. Should you wish me to contact her on your behalf about any other facilites or options in the UK then I would be happy to do so for you.
I hear what you say about treatment under the NHS and all that but there is quite a lot being done now for CC in the UK. I assume that surgery was ruled out seeing as Mary was only offered chemo, did Mary seek a second opinion on surgery if that was the case?
Should Mary want to seek further options in the USA then I will leave that to some of the USA members to discuss with you as they know far more than me about things on the other side of the pond.
I do hope that you keep coming back here Judith, you are not alone in this now. We are here for you and we care.
My best wishes to you and Mary,
Gavin
Thanks for that Marion. I put that over on the FB page as well so everyone over there could hear your thoughts as well.
Hugs,
Gavin
Great news Liz, thanks for that! Tons of positive wishes coming your way for the surgery and I so hope that it goes well. Dr Kato is very experienced and has treated quite a few of our members. Please let us know how everything goes!
My best wishes to you,
Gavin
Glad to hear Lee that all went well with the stent placement and hope that you get some very good news indeed from the CT. Please let us know how things go.
My best to you and your husband,
Gavin
Hi Emma,
Did you get a chance to speak with your mum about seeking a second opinion on everything? I heard back from Helen at AMMF today, and she and I both think that the best person for your mum to seek an opinion from should she wish to do that would be Prof Wigmore in Edinburgh. He is a surgeon and is very experienced in treating patients with CC. I heard him talk at a conference here in Dundee and he is very knowledgeable indeed.
These are Professor Wigmore’s contact details for the referral:
Professor Stephen Wigmore
Professor of Transplantation Surgery and Honorary Consultant Surgeon
Hepatobiliary-Pancreatic Surgical Services and Edinburgh Transplant Unit
Royal Infirmary of Edinburgh
Work: 0131 242 3662 (Gayle Stirling, Clinical Secretary)
Fax: 0131 242 3617
Email: s.wigmore@ed.ac.ukhttp://www.ed.ac.uk/schools-departments/surgery/staff/surgical-profiles/stephen-wigmore
If it were me then I would certainly be wanting to seek a second opinion from him to either look at the possibility of trying surgery or for someone like him to rule it out if not possible. This is a very tough disease to diagnose and treat etc and your mum really needs to seek opinions from people who are experienced in all matters about CC. I can’t stress that enough and I am sure that everyone here on the site would agree with me on this.
As to getting the referral to Prof Wigmore, your mums GP should be able to arrange this or if not then your mums consultant at the VIctoria will do it. If any of them say they can’t or won’t make that referral then fight them every way for this, do NOT take no for an answer on this!!
I do hope that some of that is of help to you Emma and if I can help any more then please just let me know and I will see what I can do. Please let us know how everything goes as well.
My best wishes to you and your mum,
Gavin