gavin
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Hi Fay,
I assume that you mean the Annual Meeting in Chicago next end of May or start of June? If so then I am pretty certain that there will be quite a few there as the Foundation have had a booth there in the advocates hall each year for the last few years. And as the last few years have rolled by, the booth has gotten bigger and bigger and in a more prominent location too!!
So yes, I guess there will be a few there again next year but I don’t have any more details as of yet. Hopefully members who will be there next year will be able to post something to you on this thread soon. And my thanks to you if you are planning on going next year as well, great stuff!!
Hugs,
Gavin
Thanks for letting us all know about Michelle Karen. I am very sorry indeed to hear of her passing and yes, she will be missed by many. My thoughts right now are with Michelle’s family and friends.
Hugs to all,
Gavin
Dear Angela,
I am so very sorry indeed to hear of the passing of your mother in law Rosemary. Please accept my sincerest condolences. I know that you have done everything in your power to help in all ways that you can for her and know that she would have been very proud of what you did for her. I am glad to hear that her passing was peaceful and that the family was beside her as well. Please know that we are all here for you and my thoughts are with you and your family right now.
Hugs,
Gavin
Dear Hopeseeker,
I am real sorry to hear the news about your MIL and the start of Hospice care for her. I can still remember how it felt when I was told that my dad had been taken into in hospice care all these years ago. It was tough to take and I can understand how your husband is feeling right now.
Hospice I know will do everything that they can to make your MIL as comfortable as possible and that now I would argue is of the utmost importance. The sleeping a lot is so very common as is the swelling and there are things that can be done to help with the swelling and draining of any fluids. Nausea could be an issue and at some point a syringe driver to help with getting meds in could also be an idea. My dad had one and it really helped him loads as with the nausea he was bringing up tablets before they could have a chance to work. Hospice will be able to advise on this but remember always that we are here as well.
From a personal point I and both my dad had nothing but great things to say about the quality of care that he got when he was going through hospice care and I am sure that your MIL will receive outstanding care as well. It is good to hear as well that your MIL is feeling better after having had the chemo stopped now. Please know that I am thinking of you all loads.
Hugs,
Gavin
Hi all,
Many thanks to you all for your best wishes for my mum and for also your kind words, they all mean a ton to me. My mum is getting home on Monday if things go as planned and the new care plan at home is in place for carers in 3 times a day now and the commode is there also. Her movement still is terrible so not sure how she will get on at home so we’ll just have to see how that goes. Says the trip to hosp has hit her confidence which is understandable and she got weighed again today, only 36kg, not good at all. But that is what it is I guess.
Sorry for sort of hijacking your thread Brigitte!!
Hugs to you all,
Gavin
Hi Brigitte,
Absolutely ZERO apologies are needed around here for anyone to have a rant. So you go ahead and rant away as much as you want to! It certainly helps to get things off your chest when you feel the need to do so and that is something that I think everyone can benefit from doing so sometimes. I know that I have had a few rants around here over the years and that has helped me!
You certainly have a ton of stuff to deal with don’t you and this episode with your grandson just adds to your stress does it not. Stress is something that I can totally relate to and I get a ton of that as well! My mum is in the hospital right now, has been since last Friday and was taken in with breathing troubles. For those here who may not know, she has COPD and has had it for about 20 years and I’ve been her carer for 11 years. She should get out on Monday when the new at home care package is in place but tomorrow I need to spend the day at her flat waiting for the delivery of her new home commode.
Anyway, thats enough of my rants! You know that we are always here for you Brigitte so you feel free to rant away as much as you want to!
Hugs,
Gavin
Hi JH,
Is this is the trial that your wife is on?
https://clinicaltrials.gov/ct2/show/NCT03046862
And did the doctors say why they want your wife to undergo another needle biopsy before starting the trial? There are quite a few postings here on the site regarding needle biopsy and if you want you can search for them through the search forum function at the top of the page.
My best to you and your wife,
Gavin
Hi Rick,
Thanks for the explanation of this and yes, a great way for members to communicate off board if they want to!
Thanks!
Gavin
Thanks Beatriz! And yes, the research will most certainly continue! And many many thanks to everyone who responded to the survey as well. We had a spectacular response from everyone. Thank you all!
Joe, many thanks to you as well for your points and observations. You are right in that more questions should be asked and I got in touch with Donna about your concerns regarding this. Future surveys will be done on other issues that affect patients and they will be more detailed regarding collecting of info/experiences etc.
Many many thanks to all!
Gavin
Hi JH,
Welcome to the site. Sorry that you had to find us all here and I am very sorry indeed to hear of your wife’s diagnosis. But I am glad that you have joined in with us all as you will get a load of support and help from everyone here. We don’t have all the answers but will help as best as we can.
From what you say, it does sound like your wife is tolerating the side effects of the gem/cis very well and that is good to hear. I also hope of course that the chemo works as planned and will be keeping my fingers crossed for the best possible outcome to this. It sounds too like you both have a great support network network at home and that is also very good to hear as you will both need that as you go through all of this. And of course, you now have all of us as well here so please keep coming back and let us know how everything goes.
I hear what you say re another opinion from treatment centres in the USA and that is of course an option for you. I have some links from here on the site that will be of use to you should you wish to go down that road now or at some point in the future.
This link comes from the “newly diagnosed” section on our homepage – https://www.cancer.gov/research/nci-role/cancer-centers/find
I guess you will have come across the hospitals and physicians section of the site and if not it can be found here https://cholangiocarcinoma.org/db/forum/hospitals-physicians/
In it, it has the thread that was created over the years from the members here on the site where either they or their loved ones have been treated. It can be found here https://cholangiocarcinoma.org/db/topic/treatment-centers-physicians/
Yes a second opinion is always an option and one that should be looked into, or even a third one if need be. Hopefully some of the other US based members will be along soon to chime in with their thoughts on facilities in the USA. I can not help with that I am afraid as I am from the UK.
Good luck with everything. Please stay in touch and let us know how everything goes. We are all here for you.
My best wishes to you and your wife,
Gavin
Thanks for this Rick, looks like a great function and addition to the boards! I can see the green button under your picture. I’m guessing that the message will go to the recipients email address that they use when the registered with us?
Thanks!
Gavin
Yay! What great news! Thanks loads for sharing that with us all. Fingers are crossed as well for the neuropathy and for that to get better very very soon as well!
My best to you both,
Gavin