New member Wendy from Holland
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Wendy,
Have you thought about SIRT? It is now available here in the UK. I heard from Helen again and she says that SIRT is availabe where there is evidence of clinical progression during or following standard chemotherapy. That could be worth looking into could it not?
http://www.sirt.org.uk/index.htm
Here is a link to Prof Juan Valle’s page at the Christie in Manchester –
http://www.christie.nhs.uk/about-the-christie/whos-who/our-consultants/juan-valle.aspx
My best wishes to you,
Gavin
Hi Wendy,
I’ve done some digging around and been in contact with Helen for you. As to the WNT that you read about in the news in Scotland last week, trials for that , yes it is being used on other cancers but not CC right now. The media sometimes make it seem that things are happening right now and the next step is indeed a trial with it but as to when that start I have no idea but it will not be very soon. I wish that it was but there is still work to do before trials can be started. Helen is very close to the team up in Scotland as here charity part funded the research. If I hear of a start date for that treatment trial I will of course let you know as soon as I can.
As to targeted thaerapies, they are not done here in the UK yet but trials are being planned for this and Hopefully this will come. But again, I do not know when this will happen. Helen confirmed that the thinking is that this is the way forward here with CC but it is not happening yet.
Here are a few links re trials.
USA and worldwide – http://cholangiocarcinoma.org/professionals/research/clinical-trials/
I wish that there was more going on in the UK trial wise right now but I know more will be coming in time, but like everyone I wish it would be quicker. Genome testing is not that common here in the UK yet but I think a few people from here have tried it but thinking out loud I think biopsy samples have to be sent abroad to be tested I think.
Kevin is from the UK as well and there is some info on it that may be of use and interest to you.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13064
Have you searched mainland Europe for more trial or genome testing options? I don’t have much info on that myself and hopefully others can chime in with that if they have anything to add.
I wish I had more to offer Wendy but I will let you know more when I can. Helen let me know that the The Christie have an office that deals with patients from Europe and I will let you know when I hear more about that.
Hugs,
Gavin
Thank you very much Gavin for your response and all the information! I am so happy I can talk to you on this board.
I don’t think there is any chemo therapy left for me to try. The 5FU treatment was already a second line therapy. I am therefore trying to gather information and to join a relevant clinical trial based on gene, targeted or immune therapy. The offer seems scarce here in the Netherlands.
I am also particularly interested in the upcoming trials in Scotland, based on the succesful WnT pathways trials on animals, as published last week? Do you know what medicines have been tested?
I recently heard of the AMMF in the UK. I will definitely have a closer look on this site!
Thank you very much for checking if Prof Juan Valle will be able to see me & for all your moral support…
Hi Wendy,
Great to hear from you again but sorry that the news that you have to share is not as we would all have liked to hear. But yes, this is definitely the place to come to share everything that has happened to you so far.
I will help if I can with all things from the UK if this is where you want to come to seek further opinions etc. Is it more chemo of a different type that you are looking for? If so then I would travel to Manchester in the North West of England to see Prof Juan Valle at the Christie in Manchester. He is very much experienced in dealing with patients with CC and has seen quite a few members here on the site. He is also much published and is co chair on our Medical Advisory Board here at the Foundation.
I am pretty sure that he would be able to see patients from outside the UK but I am looking into this and will get back to you with more when I hear more. Hopefully that will not take too long.
Have you heard of AMMF in the UK? That is Helen’s site and she has a ton of purely UK specific info with links to specialist facilities here in the UK. This info can be found here –
http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/
Stay strong Wendy and I will be back in touch with you as quick as I can.
Hugs,
Gavin
Wendy, I know there are some great DOCs there who treat CC, and I would turn this potion over to Gavin who knows better about that then I do and he can also put you in touch with Helen who started a Board like ours. I know Gavin will come on when he wakes up and I know for sure he will answer you, so please just hang in and hang on as we will get this done.
Thank you very much Lainy. I would go anywhere for another opinion! Fly me to the moon
But where should I go in the UK? Where to start?Thank you very much for your best wishes and prayers, I can really use them now…
Dearest Wendy, I am so sorry to read about this part of your CC journey! First of all please don’t listen to statistics as you are much more than a number and most patients seem so different than mere numbers! Would it be entirely out of the question to go to the UK or send records there for another opinion? Above all else I hope the Docs are giving you something for the pain and if it is not working then they need to try something else! Let’s see what others on our Board have to say, hang in here and be strong and know you are being sent the best in wishes and prayers.
Hi!
I just wanted to give you an update. Don’t know if this is the right place for it.
Unfortunately the 5FU didn’t work, actually it back fired. All tumors have grown significantly, leaving me with (tumor) fever and abdominal pains. An antibiotic treatment has helped to get rid of the fever, but the pain is still there.I am desperately seeking for other options and discussing clinical trials with several doctors here in the Netherlands. However it feels like a huge struggle. Doctors are reserved about there own clinical trials! I feel that I am not only fighting cancer, but I am also fighting its statistics. It feels like they have already given up on me.
All tips & tricks to deal with and overcome this are welcome!
Regards,
WendyWendy,
I also want to welcome you to this site and send you lots of hugs and support! Praying that the 5FU treatment shows great results. I am also a mother fighting this disease so I know your determination! Stay positive and don’t lose hope….I will be a stageIV, ICC 5 year survivor as of tomorrow!!
MelindaThank you very much for this warm welcome! I have started with the 5FU treatment last week. Apart from some nausea I feel fine, so far so good. In the meantime I am looking for other options. I have found some new leads, hopefully they will bring me new information or new treatment opportunities. I will keep you posted!
Warm regards,
Wendy@ Moontje: I would love to have the details about Belgium!
Hi Wendy,
Welcome to the site. Sorry that you had to find us all here but glad that you’ve joined as you’re in the best place for support and help and you will get loads of both from us all. Thanks as well for sharing everything that has been going on with you, you’ve certainly been through a ton of stuff haven’t you!
Hoping that the 5FU works as it should and please let us know how that goes for you. Loads of positive thoughts are coming your way for that. So glad that moontje has replied to you as well.
Glad to hear you say that you are feeling good right now and are ready to keep on fighting this. I wish you every success in finding further treatments or trials to do. I hope you will keep coming back here and please know that we are here for you always.
My best wishes to you,
Gavin
hey wendy,
we are also from holland ..tom is a surviver for almost 7 years.. the last few months he is on the combo gemox.. in belgium.. in maastricht he was given a few monhts to live…and they would do nothing… the latest scan showed us that the metastases in the liver are almost gone, and the tumor in jis belly is schrinking… so we have made the best choice to go to belgium… second and third opinions are the key!!!!
this is a very loving and caring foundation…its a family..
if you have guestions about belgium, ask and i wil give you the details…and welkom to the baord!!! moontje
Wendy, I am also an intrhepatic CC patient…also having had surgery and adjuvant chemo (6 rounds of Cis/Gem. I don’t know how you do it girl…with two kids. I admire your spunk and your stick to it attitude…..and a happy to hear that you’ve gotten through all those treatments, esp the chemo without having the side effects get to you too badly. I hope you find something here on the boards to help, but at the very least, we are here to listen.
Julie T.
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