gavin
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Try this link as well Billy.
Gavin
Hi Billy,
As I understand it there may be funds available to purchase certain full pieces but please do not quote me on that one! And even if we were able to purchase a report I am not sure if we would be able to put the full link here on the site for all to read as many of the publishers do not want their research pieces out there for all to read. But I will look into this some more.
As Mary has said though google will be your friend here! I did this search here –
https://www.google.co.uk/search?q=AJCC+intrahepatic+cholangiocarcinoma+8th&rlz=1C1ASUM_enGB770GB770&oq=AJCC+intrahepatic+cholangiocarcinoma+8th&aqs=chrome..69i57j69i60j69i61j0l2.886j0j7&sourceid=chrome&ie=UTF-8
Maybe you will find much more info on this issue with reports that come up in this search that I am unable to link to here on the site for copyright reasons. If you find a piece though that is available for purchase then please send me the link then I will see if there is anything that we can do with it with regard to purchasing it etc. Hopefully you will find more info through the above google link.
Thanks,
Gavin
Hi Tilly,
I too am sorry to hear this latest news from you about Peter and know that this is not at all what you wanted to hear. But I too hope that they have caught this early now as we all know that the earlier things are caught the better for many reasons. I know that it will be hard for you both to get back into the routine etc of treatments and all that that brings with it as well. But I am hoping that once this latest news and setback has been taken in that you will both get the boxing gloves on again and come out swinging. Thinking of you both right now and keeping my fingers crossed for the best possible outcomes with the Gem/Cis and other treatments that may follow. Please keep us updated on how things go.
Hugs,
Gavin
Dear Kim,
I am so very sorry indeed to hear of the passing of Rich. Please accept my sincerest condolences. You both did everything that you possibly could to help Rich fight his cancer. I wish that there was something that I could say that would help ease the pain that you feel right now. Please know that we are all here for you and my thoughts are with you and your family right now.
Hugs,
Gavin
Dear Shortcanuck,
I too am sorry to hear the news of the passing of your husband. Please accept my deepest condolences. We do have Dr Giles here on the site who may be able to help you with coping right now. He can be found here on this page –
https://cholangiocarcinoma.org/for-patients/ask-dr-giles/
Please do not worry about posting on the right or wrong page. We also have a board here that may also be of help to you right now as well –
My thoughts are with you and your family right now.
Gavin
Hi Kim,
Glad to hear that you were able to get Rich home now and sorry to hear though of the initial issues with hospice care. Hopefully this is just a one off. What great care though from the pharmacist! As you say, one of the perks I guess of living in a smaller town. Here is a link on ascites for you that has a lot of info in it and I hope that it is of use to you.
https://www.cancerresearchuk.org/about-cancer/coping/physically/fluid-abdomen-ascites/treating
You should def ask the doc about the fluid coming back quicker if you keep draining each day but my understanding is that it can come back quicker the more that it is drained. I am not an expert on this at all but my dad had it done a few times and after each time he felt a lot more comfortable once the draining was done. Speak to the doc about this Kim.
My best to you and Rich,
Gavin
Hi Mary,
Thanks for all of that and I agree with all that you say and yes as you say, there are no easy answers to anything to do with CC. I so wish that there were though! And yes, you are so right in what you say re doctors etc and how they should be highly experienced in dealing with patients with CC.
My dad got the metal stent as for him surgery was ruled out from diagnosis and his team thought the metal one would be best for him in that situation and my dad was also wanting the best quality of life for the time that he had left. Not wanting the plastic one with clogging issues etc every few months, hosp visits to get it changed and all that that brings.
Thanks loads for the link as well Mary, much appreciated as always!
Gavin
Hi Victoria,
Thanks for sharing this news with us all about your husband and I agree with Mary that stable is good! My fingers are crossed for the next lot of scans and hope that the good news will continue for you both. It is also good to hear as well that the side effects of the gem/cis are tolerable for your husband with the meds for them etc and hopefully that will continue as well. Fingers are crossed for you both and please if you can let us know how things go.
My best to you both,
Gavin
Hi Brigitte,
Sorry to hear about this and I have some links that hopefully will be of use and interest to you.
https://www.mskcc.org/blog/managing-chemotherapy-induced-peripheral-neuropathy-after-treatment
Also, have you done a search forum here to see what others may have suggested in the past that have had to deal with this?
Hope some of these links are useful to you Brigitte.
Gavin
Hi kgroft,
Glad to be of help! Thanks for letting us know about your husband and the Hopkins trial and I hope that that goes well for him. I will keep my fingers crossed for the best possible outcome here and please let us know if you can how this goes. Good luck with the Hopkins trial and I hope that if needed then the NIH and VA will be able to offer something also.
My best wishes to you both,
Gavin
Hi Mary,
Thanks for pointing that out, I never noticed that. What great stuff and huge thanks to all involved! I had a quick search but couldn’t find an open access version but will keep looking and if I find anything I will post it here.
Thanks to all,
Gavin
Horrible horrible news to say the least but I knew that it was coming. I was last in touch with Marion through email a few weeks ago and she told me that things had progressed a lot to this point.
I came here 10 years ago when my dad was diagnosed and Marion was the very first person to respond to my introductory post on the boards. Since then we became good friends and must have exchanged thousands of emails over these years. She helped me enormously through everything as she did for thousands of people on these boards throughout her time here. Most people here now and over the years on the boards most probably will not have fully understood the impact that Marion had in helping to fight this cancer as the work that she did away from the boards was enormous to say the least. Meetings, committees of various types, conferences everywhere, steering groups, advocacy, presentations etc, the list of what she did and the amount of work that she did for years for all of us behind the scenes is huge and her impact on fighting this cancer will never be forgotten, as will Marion never be forgotten.
So proud to call you my friend Marion, Rest In Peace. You will be sorely missed by a ton of people.
Gavin