gavin
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THis from 2013 Katia may be of interest to you –
Current Status of Photodynamic Therapy for Bile Duct Cancer.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572349/
Glad to hear that you have talked with the professor in Bochum and that they have dealt with patients with CC. I know that when my dad had PDT in 08 it was a one time treatment, one zap as it were with the laser but as I understand it now patients can get more than one treatment with the laser and it sounds like things may have moved on with PDT from where they were back in 08.
Hugs,
Gavin
Hi Michael and Gavin,
From one Gavin to another and his dad, welcome to the site. Sorry that you both had to find us here and sorry to hear everything that you have and are going through but glad that you’ve joined. You will both get tons of support and help here from everyone and thanks for sharing with us.
As you have realised, there is tons of info on the site here and I hope that so much of it will be of interest and use to you and you know we will help if we can. You say you are feeling good Michael and feeling good sounds real good to me! I do hope that the Y-90 worked well for you and please let us know the results of this when you get them. Please also if you can let us know what the molecular testing shows when you get them as well.
And to both of you, keep on coming back here. We are all here for you.
My best wishes to you both,
Gavin
Hi Michael,
Welcome to the site. So sorry that you had to find us all here and I am sorry to hear about your mum. But glad that you have joined us here as you will get loads of support and help from everyone. My thanks to you for sharing your mums story with us all and I know that it will be of help to many others also. You so did the right thing for your mum in pushing for further opinions and that is something that we all highly recommend.
I can’t really add much to the chemo or not discussion but I do agree with what Lainy and Catherine have said about it being a very personal decision. What is right for one person may not be right for another so it really is hard to advise on that issue. My dad never had chemo either so I have no personal stuff to share on that. By the time they looked at chemo for him it was too risky to try so too late.
If we can help we will, please just ask and we’ll do our best and there is so much info here on the site. Please keep coming back here and know that we are here for you.
My best wishes to you and your mum,
Gavin
Hi Katia,
I am not sure to the answer to your questions re PIPAC and mets so would not like to take a stab at that one. Hopefully someone else will be able to help with that and I am not too sure really what PIPAC involves etc.
How is your dad feeling today?
Hugs,
Gavin
Oop’s. Link I gave was for the logged into FB for the Vets page! Thanks for the other one Marion. The Vets page really is a good one, lots of talk on there re the VA and Darla is in the group also.
Thanks!
Gavin
Hi John,
Welcome to the site. Sorry to hear about your dad and everything that he is and is having to go through right now. But glad that you have joined as you have come to the best place for support and help and will get loads of both from all of us here.
I am Scottish so will leave stuff about the VA to the others here but so agree with your dad seeking further opinions on his cancer from doctors or hospitals that have much experience in diagnosing and treating patients with CC. The group on Vietnam Vets on facebook is a good one and one that I am part of as well although obviously I am not a vet, but it is a great group and you should have a look at it if you are on Facebook. It changed to a closed group but you just click to join and they changed their link so I don’t think the link Marion gave works now. Try this one as it works for me –
https://www.facebook.com/groups/256312501233055/
And of course John please keep on coming back here. If we can help in any way please just ask and we will do what we can.
My best to you and your dad,
Gavin
And forgot to say as well, that is great treatment that your dad is getting there and I hope he recovers well and quickly from his surgery too!
Hi Katia,
PDT is not used a lot but my dad had it as his treatment when he was diagnosed back in 2008. I wrote quite a lot about his treatment and experiences with it here on the site at the time and if you want to you can search for my first posting. I would post a link to them but for some reasons links to previous postings do not seem to work here.
But, to save you time searching through all my pages of posts just go to user search, Gavin, click on all posts link and that brings up all of my posts. Then click on page 333 which is the first page of my posts and that brings up my first posts. There are posts about PDT on that page and pages 332 and 331 as well I think.
Hope that some of the info in there will be of use to you and if you have any questions about my dads experiences etc just ask and I will do my best to answer them.
And no, your question is not a dumb one. No question ever is dumb! But the reason that you can not find much experiences of people talking about PDT for CC is that it is not widely used for it.
Hope that helps.
My best to you and your dad,
Gavin
Agree with Lainy, keep that record going and no, can’;t recall anyone doing more than that. But then again Duke, we always knew you were special.
Sorry to hear your bad news about the breast cancer and Novartis. Big grrr to that.
Gavin
Hi Ali,
Great to see you again and thanks for the update on your partners dad. Bar the need for the stent change, it sounds like things have been going really well for him. The clogging of stents is very common and how long each one lasts depends on whether they are metal or plastic. Hopefully the changing of this one will be a breeze and he can go back to doing really well once again!
Hope it all goes well and please let us know how it goes.
My best to you,
Gavin
Hi Katia,
Thanks for the update on how your dad is doing and with everything that is and has been going on for him lately. I am sorry to hear about the new spots.
Thanks for the links on PIPAC and I so hope that this will be a successful procedure for your dad with the best possible results. Will certainly be keeping things crossed for him with this and please let us know how it all goes.
My best to you and your dad,
Gavin