1

(100 replies, posted in General Discussion)

Big hugs for you Carol.

Thinking of you and your mum right now.

Gavin

Preoperative Sequential Portal and Hepatic Vein Embolization in Patients with Hepatobiliary Malignancy.

http://www.ncbi.nlm.nih.gov/pubmed/26304608

Mizzey,

Here is some info re SIRT in the UK, hope it is of use to you.

http://www.ammf.org.uk/cholangiocarcino … options-2/

Hugs,

Gavin

Uncle Duke,

Mick Jagger says it well, but you say it much better my friend. As always with you, you always make the right choices and do everything in the most dignified of manner as well. Quality of life, my dad would so have agreed with every single word that you just said there. I think of you often Duke and wish only for good things for you and your family.

Much love to you,

Gavin

5

(100 replies, posted in General Discussion)

Yes you are so right Carol in that it does hurt but please trust me when I say that in time the pain that you feel right now will ease but it does take time.  It may not seem like it will ease right now but it will. This is such a tough time for both you and your mum Carol and Lainy is right that the good memories will one day outweigh all of the bad ones. I was right there with my dad where you are now and so know that pain that you feel.

Hugs,

Gavin

6

(100 replies, posted in General Discussion)

Dear Carol,

I am so very very sorry indeed to hear of the passing of your dear dad. Please accept my sincere condolences. I so know the pain that you will feel right now and wish so much that I could help ease it for you. Please know that as always we are here for you and always will be and my thoughts are with you and your mum right now.

Hugs,

Gavin

NCI-Molecular Analysis for Therapy Choice (NCI-MATCH) Trial.


NCI-MATCH, the largest, most scientifically rigorous precision medicine trial in cancer to date, is now opening at cancer centers and community hospitals across the country.

The trial, also known as trial EAY131, seeks to determine whether matching certain drugs or drug combinations to people whose tumors have specific gene abnormalities will effectively treat their cancer, regardless of their cancer type. Treatment for this trial focuses on molecular abnormalities of a patient’s tumor instead of the organ site of the cancer.

The NCI-MATCH trial:

Seeks to enroll adults 18 years of age and older with any type of solid tumor or lymphoma (cancer in the cells of the immune system) that has returned or worsened after standard systemic therapy (oral or intravenous). Patients may also be eligible if they have a rare type of cancer for which there is no standard treatment.

Is a nationwide trial that is locally available and will enroll patients on a rolling basis as additional sites and treatment options become available (the trial opened with ten treatment arms and an additional 12 will be added within the next several months).

Requires patients to have a new biopsy and their tumor cells will need to undergo genetic testing to see if they contain one of the gene mutations being studied. If so, they will receive additional evaluation to determine if they meet the specific eligibility requirements of the treatment arms to be accepted in the trial. Trial researchers expect that about 1000 patients—one third of those screened—will have one or more molecular abnormalities that match one of the 22 treatment options being studied.

NCI-MATCH was co-developed by the National Cancer Institute (NCI) and the ECOG-ACRIN Cancer Research Group, one of five NCI-sponsored National Clinical Trial Network Groups. ECOG-ACRIN is leading the trial.

For more information or to locate trial sites, contact the NCI Cancer Information Service at 1-800-4-CANCER or visit the NCI-MATCH page on Cancer.gov.

http://www.cancer.gov/about-cancer/trea … /nci-match

http://www.cancer.gov/about-nci/organization/oar

Gavin

Stalled Clinical Trials: The Enrollment Problem -

http://cctawareness.org/stalled-clinica … t-problem/

How Clinical Trials Awareness Puts the Fun Back into Medicine -

https://modernmedicines.com/entry.php?id=637

Liver Transplant for Cholangiocarcinoma: A Comeback?

http://www.ncbi.nlm.nih.gov/pubmed/26295179

10

(41 replies, posted in General Discussion)

Dear Duke,

As the others have said to you, you will always have a place here with us and here in all of or hearts for ever. Not only have you touched and helped all of us here but so many many others around the world who read your posts but do not post or have not joined as members. The effect you have had on so many people is huge and you will always be with us all.

You have fought all of this with strength, dignity, courage and of course humour as well. And yes, we most certainly will keep up the fight.

Thinking of you and all of your family right now.

Hugs to you,

Gavin

11

(100 replies, posted in General Discussion)

Carol,

Sorry to hear about the pneumonia and yes, I would say that moving your dad anywhere right now is most definitely on hold. My mum had pneumonia and she had it very very bad to say the least, it caused one of her heart attacks. So hope that the antibiotics start kicking in big time very soon and that he can move on from this. As if he and you all did not have enough to deal with already. Thinking of you, your mum and your dad right now.

Hugs,

Gavin

Balancing Work and Caregiving

http://www.cancer.net/blog/2015-08/bala … caregiving

Great news for UK members wishing to partake in the GWAS study and thanks to AMMF for this piece today.

http://www.ammf.org.uk/2015/08/20/gwas- … oma-study/

Gavin

Hi Steven,

No problems and thanks for understanding, I see what you are trying to do now. Yes we seem to have had some issues with people posting something and they hit submit and it does not post so I think they hit it again and it posts twice or more, hence our trying to delete the duplicate postings and just leave one of them if that makes sense!  I am guilty as charged on that front too! But like Lainy says, no traffic tickets get issued here but maybe i should give myself a ticket!

And Lainy, ha, Eraser! I will need to hit the gym then to bulk up like Arnie! Just trying to help Rick out so that his workload is reduced a bit, and we all know how busy Rick gets with keeping everything running tip top! smile

A "cold snap" for you then Lainy........ but 100, whoa......I would still be melting in that me thinks!

Heating on for you then Momma!

Thanks both,

Gavin

Hi Steven,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your mum. But I am so glad that you have joined in with us here as you are in the best place for support and help and will get loads of both from everyone here. You have so done the right thing in seeking further opinions about all of this for your mum and from what you say it so sounds like you are doing a fantastic job in taking care of your mum and I know how much that will mean to her as well.

Please let us know how everything goes with all of this and please know that we are here for you as well. And just wanted to say as well that if you are wondering where your 3 other posts that you made in the intro section of the site went I deleted them. It is so not that we don't want to hear from you but we are trying to clean up any duplicate postings from members so that other members posts do not get lost in the traffic that we get on the site. I only deleted them as they were the same as this introduction post that you made here and the other posts did not have any replies to them yet. I hope that is okay with you!

Looking forward to hearing much more from you Steven.

My best wishes to you and your mum,

Gavin

ASLAN’s Bile Duct Cancer Drug Given FDA Orphan Drug Status.

http://www.dddmag.com/news/2015/08/asla … ancer-drug

http://www.asianscientist.com/2015/08/p … carcinoma/

Cediranib or placebo in combination with cisplatin and gemcitabine chemotherapy for patients with advanced biliary tract cancer (ABC-03): a randomised phase 2 trial.

http://www.ncbi.nlm.nih.gov/pubmed/26179201

18

(100 replies, posted in General Discussion)

Hi Carol,

Big grrrr to consultants not turning up for this meeting, not what you need right now.  I have a personal question if I may, hope you are not offended by me asking this. Is your dad able to get out of bed at all right now, eg- for going to the toilet? Sorry to ask but things like that have to be taken into account right now as your dads comfort is of the utmost importance here and I know you will agree with that.

Was the issue of Macmillan nurses raised today and will one of their reps be at this meeting that is coming up? If not I strongly recommend that you mention this at the meeting as you are entitled to one and I know they will be of great help to your mum and dad.

I can so see why your dad feels comfortable where he is and wants to stay there, my dad was the same.

Hugs,

Gavin

I know that you are in bits right now Mizzey, we unfortunately all know what that feels like and can so feel your pain. Yes please try and stay as positive as you can and your sister will need you there with her throughout everything. And know as well that we will always be here for you too.

Hugs,

Gavin

Hi Mizzey,

I am very sorry indeed to hear the news you have about your sister. I know how hard this will have hit you both and I so wish that I could say something that would help right now. I am glad to hear that she has an appointment to see about a trial and I do believe as well that you have made the right decision in supporting your sister no matter what she decides to do about all of this.

I so hope that your sister will get some good news at this meeting and please let us know what is discussed if you can. And please know as well that we are all here for you.

Hugs,

Gavin

21

(100 replies, posted in General Discussion)

I forgot to ask as well Carol, does your dad have a Mac nurse as they should be able to help out with nursing tasks if the Marie Curie nurses can not. How did your meeting with the consultant go?

Hugs,

Gavin

Hi Kim,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your sister as well. But glad that you have joined in with us as you are in the best place for support and help and will get lots from everyone here.  I know how much this diagnosis for your sister will have hit you all and I was that way as well when my dad was diagnosed with his inoperable CC.

If you could tell us some more info about your sister that would be great as the more info we have the better we will all be able to help you. And I hope that some of our other Australian members will pop in here to say hello to you as well.

My best wishes to you and your sister,

Gavin

Combination of Praziquantel and Aspirin Minimizes Liver Pathology of Hamster Opisthorchis viverrini Infection Associated Cholangiocarcinoma.

http://www.ncbi.nlm.nih.gov/pubmed/26277607

24

(41 replies, posted in General Discussion)

Hi Duke and youngest son,

So great to read this post from you this morning!!! Have been thinking of you loads and hoping to read a post like this from you on here. Now you keep on getting better now Duke and I am so looking forward to hearing from you again when you are feeling stronger.  Can't wait to hear all that you have to say to us all!

Get strong!

Gavin

25

(100 replies, posted in General Discussion)

Hi Marion,

How it works here in Scotland and i assume the rest of the UK as well, the carers that I am talking about are carers that will help with personal care, washing, cooking etc and they are not allowed to administer medicines either. At least the ones that come to my mums are not. They will be able to get medicines ready for the patient to take, put them out etc but the patient has to take them themselves.

Macmillan nurses or Marie Curie nurses will be allowed to administer these drugs and would also be able to prescribe stuff as they are nurses and not carers. They can also evaluate patients, make decisions advise the GP etc but again, carers would not be able to do that..

Hope that makes sense. Also, the district nurse would probably come in to see someone a lot more if they were being cared for at home so that is something that should be kept in mind as well. As you know, my mum gets the services of the local COPD nurse and she is coming in once a week. But for someone who has cancer then that role would most probably be taken up by a specialist nurse who would be a Mac nurse.

Hugs,

Gavin