gavin

Hi Positivity,

I am sorry to hear of the troubles that your mum is having with her stents and stuff that comes with it, and I hope that she can get some relief from that and the jaundice as well. I will try and answer some questions for you as best as I can.

My dad also had a stent placed for his jaundice upon diagnosis and it was a metal one. His CC was deemed inoperable at diagnosis so they went with the metal one and not the plastic one. As I understand it, at least back then, they went with the metal one as once it was in it would have ruled out any surgery and my dad was not a candidate for surgery anyway and the metal one is seen as permanent. It can last around a year or so before clogging can become an issue and with the plastic one it is around 3 months or so hence the need to keep replacing the plastic ones unfortunately. The metal ones can be cleaned out now I think and I know that someone here who’s dad had a metal one also had a small plastic one put in the end of it once it started clogging as well to help keep it clear. Andie it was.

I know that these stent replacements will be a pain in the backside for your mum, but they really are needed to keep the ducts free so that the bile can keep flowing out. The way to look at the jaundice IMO is that it will take time for it to build up and it takes time as well sometimes for it to go back down so that your mum will feel better again with itching, yellowing etc. And yes, pancreatitis can be an issue and must be watched out for.

PDT was what my dad also had for his treatment after diagnosis along with the metal stent being placed and I wrote about it a lot back in 2008 when he was going through it. My posts on this can be found on this link –

https://cholangiocarcinoma.org/db/search/gavin+pdt/

The above link has all the posts by me that have the word PDT in it. But the link below starts at page 19 of my posts on this subject and has a lot of quite detailed info about my dads treatment with PDT and that may be of more specific interest to you.

https://cholangiocarcinoma.org/db/search/gavin+pdt/page/19/

Guess if you are interested in PDT then start on the above link and work backwards from page 19! There is a lot of info in there but if you want to know more about it then please feel free to ask my anything on it and if I can help I will be more than happy to do so.

PDT is not new at all and I guess to be honest there have been mixed results with it over the years. Basically it involves injecting the patient with a substance (profirmer)  that after a few days will gather on the patients tumour. Then they go in with a laser once the substance has gathered on the tumour and try to zap it. It is painless but has side effects which I talk about a lot in my postings in the 2nd link I gave you. Basically again the patient becomes hyper sensitive to light of most types for about 6 weeks. The treatment may have changed somewhat since my dad had in 08 but that is the basics of what happens. It was seen for my dad as a palliative type of treatment and he went with that over the chemo due to his desire to have a better quality of life with the option of trying chemo later on.

I hope some of that is useful to you and let me know if I can help any more. Please let us know how things go with your mum with all of this.

Hugs,

Gavin

What a great idea for a thread Brigette, and what a lovely dog as well! No wonder she has made your life better and you smiling too! And I bet that she kept you active and running around daft after her when she was a pup as Labs can be very active can they not! I bet that she will bring loads of smiles too when you take her to the nursing homes etc for all to see.

Thanks and can’t wait to see everyone elses pets as well. I don’t have any myself.

Gavin

A link here on possibe side effects Brigette –

https://www.macmillan.org.uk/information-and-support/liver-cancer-primary/treating/tumour-ablation/embolisation-treatments/what-are-embolisation-treatments.html#10251

http://www.cancerresearchuk.org/about-cancer/liver-cancer/treatment/chemotherapy/about-chemotherapy/chemoembolisation

Hope the rumbling tum passes soon!

Gavin

Hi Catherine,

Thanks for the update on how your mum is doing and what a fighter she is! Yes stable is good but I can understand her frustration about hearing “stable” and not NED. But hopefully in a few days or so she will get over the news and come out with the boxing gloves on ready to kick some CC butt once again! Sounds like the treatment plan is all in place now and you know I will be keeping my fingers crossed for you all.

Yes I agree with you that things do seem a bit quieter around here since we made the change over on the boards and the site and it seems to have coincided with some long standing members standing down from the boards for various reasons. You are so right in that they all added so much heart and knowledge and their legacy here with the work, help and support that they all gave will never ever be forgotten. I have a ton of memories of an awful lot of people that put so much into getting the CCF from where it was to where it is today. As I said, no one will ever be forgotten here.

The search forum function will always throw up their postings, insight and knowledge for many many people for years to come. I just still need to get used to telling people that it is now on the right hand side of the page instead of the top of the page! Change takes time to get used to sometimes does it not! Ha!!

I am not American as you all know, but at this time of the year I always like to wish all of you, my American family a very Happy Thanksgiving indeed and hope that you can all enjoy it as best as you can with your families. I know that this time of the year can be so hard for so many and indeed I lost my own Dad in December. But I do hope you can all enjoy it as best as you can. Hope you and your family have a good one Catherine.

Hugs to you and everyone else as well,

Gavin

Hi Brigette,

Thanks for letting us know how things went with the scan results. I too would take the results as good news and it does sound like your med team has a plan in place for further treatments and that is good to hear as well. You are also tolerating the chemo as you say, it has not spread and the doc who did the TACE says he can control it. Yes this cancer is hard to kill, but you and the med team are talking fighting talk and that is always great to hear!!

Hugs,

Gavin

Hi Fay,

I was in touch with Donna re next years ASCO meeting in January in San Francisco and she says that this year again we will be having the booth at the meeting as we have done for a few years now. Donna also says that should you wish to help out there in volunteering and in the booth etc then you would be most welcome. Marion also let me know that the San Fran meeting is indeed smaller than the one in Chicago but it is very focused indeed on GI cancers with a lot of CC physicians etc in attendance there. Let me know if you have any thoughts about this one.

Thanks and hugs to you,

Gavin

Catherine,

Thanks so much for posting this and letting us all know about Julie. I am so very sorry indeed to hear of her passing and my thoughts are with her family right now. Julie will never be forgotten around her and as you say Catherine, she was so very supportive and helped everyone here for a long time. A very very sad day indeed and she will be missed by many people.

Hugs to all,

Gavin

Just emailed Donna about this Fay so will get back to you later with something hopefully.

Gavin