gavin
Forum Replies Created
-
Posts
-
Hi Daisy,
If you go here – http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=14
Then you can start your thread with a headline so that everyone knows what the thread is about etc then just post away and hopefully others will then join in with discussing anything and everything about that trial!
And like Marion says, once you have started your thread I will then “stick” it so that it will always stay close to the top of the front page of the trials board so that as the board grows and gets bigger your thread will always stay near the top and on the front page of the board. I hope that makes sense to you!!
I hope that the trail goes well for your mum and I will be looking forward to hearing all about it.
Hugs,
Gavin
Hi Jonas,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear of your sister and what she is going through with this as well. But I am glad that you have joined in with us here and yes, it is a family and we will help if we can.
As to Immunotherapy and info on that, please have a look at Melinda’s postings as she has gone through this. Her posts can be found here –
http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_posts&user_id=5631
This thread especially – http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11199
Hope that these links work and that they are of use to you as well.
The videos that Billy mentions are here –
From what you have said, it sounds to me like that you are doing everything that you can to help keep your sister as comfortable as possible right now and I know how much that will mean to her. I was my dads carer when he had cc back in 08-09 and was with him right throughout it all.
I do hope that your sisters treatment works and that other options for treatment will be an option as well. Please do not give up hope and remember always that we are all here for you.
My best to you and your sister,
Gavin
9:00am – 9:30am
Registration & Light Breakfast9:30am – 9:35am
Welcome9:35am – 10:30am
Panel: How to Use Molecular Profiling as a Tool to Direct Your Cancer
Care10:35am – 11:45am
Disease Specific Breakouts
Colorectal
Pancreatic
Gastric
Liver11:45am – 12:30pm
Lunch & Optional Sessions
Facing GI Cancer as a Young Adult
Intimacy & Cancer12:30pm – 1:30pm
Topical Breakouts
Nutrition
Value of Exercise
Talking with Friends & Family
Relaxation Techniques1:35pm – 2:10pm
Panel: Immunotherapy in GI Cancers2:10pm – 2:30pm
Closing RemarksGlad to be of help Tia and glad to hear that your mum has not had any signs of infection or fever. Remember as well that there are many nutritional aids that will be of use to your mum when her appetite drops such as drinks and shakes that may be of use when she loses her appetite. Actually there are quite a range now of things that can help with that and there is a load of info on the nutrition board on that, My dad went through a range of them and my mum still gets the Ensure drinks to help keep her weight up as well. Some of them even taste not too bad according to my mum but my dad liked all of them!!
Yep, a day at a time is always a good plan and also enjoying the good days too along the way.
Hugs and best wishes too to your mum,
Gavin
Our Clinical Trials page is here –
http://cholangiocarcinoma.org/professionals/research/clinical-trials/
Hi Tia,
Just to add to what Marion has said, the shakes, yes my dad used to get these a lot as well. First few times they hit they scared us because he just started shaking quite a lot and they came out of nowhere so obviously that in itself is quite frightening. But once we knew that they happened he just accepted that they came and usually they went away again quite quickly. If this happens to your mum you now know that they can sometimes happen and hopefully neither you or your mum will panic about them!
None of us know exactly what is the very best most exact and correct decision to make about any of this stuff. You really just have to go with medical opinions and what is best or what your mum feels is the best choice for her to make. By all means ask loads of questions, come here for others to share knowledge, insight and experiences but never ever beat yourself up about anything to do with all of this!! When my dad was sick I always siad to him that I would support him in what ever decisions that he wanted to make and always said to him to make the decisions that he felt was right for him.
I also agree with marion here in trying not too worry too much about what may or may not lie ahead with everything as that stuff will really get to you.
Hugs,
Gavin
Hi Tia,
Will try and answer as best as I can. The stents unfortunately are necessary as when the duct gets blocked then that is what causes the jaundice as the bile can not flow through and exit the body so stenting allows it to flow and hopefully relieve any jaundice someone may have. Unfortunately stents also clog up and the plastic ones do so quicker than the metal ones. Plastic ones can last around 3 months or so before clogging can become an issue then they can be replaced and the metal ones last a year or so before clogging can start. Those are just approx figures though. Plastic stents are temporary and the metal ones are permanent and my dad had a metal one.
The jaundice and fever can be a sign that the stent is not working anymore and needs to be investigated asap and yes, infections can also be an issue with them. Metal ones can now be cleaned out I think with smaller plastic ones put into them also to help the bile flow again if they get clogged. As to how often they can be changed I think that will vary for everyone but know that from my dads case he only had the one fitted. Complications do unfortunately arise with stents and they need to be looked at if that is the case.
Hope that helps a bit and a big GRRR to stent clogging!
Hugs,
Gavin
Keeping my fingers crossed here as well for your MIL, hope it all goes well. Please let us know how things go.
Gavin
Dear Gail,
I am so very sorry indeed to hear of your loss. Please accept my sincerest condolences. I so wish there was something I could say that would help right now but know there are no words. Please know that right now my thoughts are with you and your family.
Hugs,
Gavin
John Marshall, MD, and John Neil Primrose, PhD, MBBS, on Biliary Tract Cancer: Results From the BILCAP Trial.
Video discussion.