November 24, 2014 at 5:09 pm #85011lisacraineParticipant
I think Gavin will be a great resource for you and this group has so many wonderful supporters too. I will be praying for your sister.
LisaNovember 14, 2014 at 6:45 pm #85010
Jayne….know you had appt with Prof Valle in October. Are you able to update on result?
xNovember 14, 2014 at 6:44 pm #85009
Nano knife…..is that the same as Cyberknife?
Had hoped my gp will support my referral to Dr Valle. It takes a lot to request a 2nd opinion from gp who has to contact consultant but I’ve done it. I have utmost respect for Edinburgh team dealing wth me but if there’s a chance of a different diagnosis and treatment I have to try haven’t I?
Asked gp to support me in my request for mistletoe therapy. The registrar I saw was supportive but seems the practice gp was unsure about recommending it so it’s being deferred till next week for further discussion of the whole practice. This particular gp was the one I saw 4 years ago and although referred for X ray not given blood tests till locum took bloods on my 8th visit in8 weeks (Received sick notes though…first time in 25 years of work) LF Tests in hundreds at that point.
Got that news re blocking requests at 5pm today so not much I can do till Monday. He also blocked referral to Dr Valle. Hoping from concrete answers from them on Monday.
Looked at mistletoe comments on site and although not sure I can cope with injecting myself I want to give it a try.
Love to all
AngelaxNovember 13, 2014 at 9:14 pm #85008sandie-in-franceMember
Jayne and Angela
I had a resection but the dreaded disease went to my lymph nodes … operations to remove were out of the question due to location, near my aorta.
I had six months of gemcitabine and cisplatin which shrunk the tumours dramatically although was a harsh treatment.
I am currently investigating whether nanoknife may be able to be used to remove the tumours (not the cancer, sadly) and if successful will give me time. Prof Leen at the Princess Grace in London is a good contact for nanoknife.
My heart goes out to you both, but please don’t give up, keep up the research and be positive.
xNovember 13, 2014 at 2:27 am #85007
My heart goes out to you for you and your sister. Please check out if a Maggie’s Centre is near you. They will be of help to you all in so many ways. I was operated on by Prof James Garden , at the Royal Infirmary Edinburgh 4 years ago. Have total faith in him, what he did for me and the Edinburgh team.
Last week I was told the cancer had returned and was inoperable due to the location, near the Portal Vein area. Am checking out Cyberknife in London and will check out Prof Valle too. Agree with Gavin, this site and ammf of great help.Praying for you.xxAngelaOctober 13, 2014 at 7:50 pm #85006jayneMember
Thank you for all of your lovely messages and advice.
That’s great news Sandie! What treatment did you have?
We have a meeting with Professor Valle on 21st of this month, we asked him for a second opinion. Thanks for letting us know about him everyone. He sounds really good. I will let you know what he says. Please pray for my sister!
I ve been speaking to a great woman at cancer options http://www.canceroptions.co.uk and shes given us a lot of options we can look at.
I will keep you all updated.
Thanks again and all the best to everyone!!October 9, 2014 at 8:03 am #85005sandie-in-franceMember
I saw Prof Valle at the Christie in Manchester. He is excellent. Also contact AMMF.org.uk who have a minefield of information and contacts in the UK.
I was given 2 months in November 2011 … don’t give up.
SandieOctober 5, 2014 at 8:28 pm #85004gavinModerator
And Jayne, agree with Kirsty that in Juan Valle your sister would be in very good hands with him. As I said before, he is very much experienced with treating patients with CC.
Her also sits on our medical advisory board here at the CCF.
GavinOctober 5, 2014 at 8:25 pm #85003gavinModerator
Why the hell would an organisation that is there to help people with cancer not cover CC, that is outrageous!!!! Totally absurd to say the least ! If their funding sources dictate where and how their money must be spent then surely they should not be calling themselves what they are and call themselves something more specific to where their money is actually spent?
Raging!!!!!!October 5, 2014 at 7:17 pm #85002supermumMember
Jayne I am so sorry to read about your sister and I hope you will continue to research and hopefully come up with options for her.
As you are in Leeds, why not start with Dr Juan Valle at the Christie in Manchester? He is doing amazing work with CC right now.
We live close to London and our doctor is at the London Oncology Clinic, Harley street I have met lots of people from Yorkshire there! They have a great website and lots of uplifting information.
Don’t be too disheartened that she may not be able for surgery now, there are lots of avenues to explore. My husband was diagnosed in June and was able to have surgery at Addenbrookes, he was told at the follow up that his cancer was clear but 6 weeks later it had spread to his liver and in hind sight maybe he should have held back from the surgery, had some chemotherapy and tackled it all from a different angle, who knows? Every case is unique remember that and your sister can hardly fall under statistics at her age and good health!
Good Luck Jayne, you will all get there. I have been thinking of you all day after I read your post this morning. Kirsty xxOctober 5, 2014 at 6:13 am #85001marionsModerator
We have established a resource listing, but we are not sure what service is extended to patients with Cholangiocarcinoma. Please be so kind and report back to us your experiences.
Thanks and hugs,
MarionOctober 5, 2014 at 2:05 am #85000dukenukemMember
One opinion I got at Mayo that surprised me was that the pharma companies are looking more into CCA than I had believed. Not so much at new treatments (starting from scratch is expensive), but getting approval to apply existing treatments in new areas. If they can get them approved in new areas it helps their reputations (and bottom line by being able to sell more). The opinion/hope was that this is where a major breakthrough would come. And combine this with genome sequencing to selectively treat patients instead of the broad brush approach.
DukeOctober 5, 2014 at 1:46 am #84999marionsModerator
Matt…..it is frustrating for us as well. Stacie and I have spent hours and hours searching out organizations offering financial help for our patients. The response is always the same: We do not cover the disease of Cholangiocarcinoma. One would like to scream: why not our patients? They need it as much as everyone else !!!!
I believe that it has something to do with their funding sources dictating where and how the resources are to be spent.
MarionOctober 5, 2014 at 1:23 am #84998dukenukemMember
No. that was part of an email that Julie received from a “Patient Navigator” at the Mayo Clinic that she forwarded to me. I will forward it to you.
DukeOctober 5, 2014 at 12:04 am #84997mattreidyParticipant
It’s a bummer that searching cancercare.org doesn’t return *any* results for bile duct cancer or cholangiocarcinoma…
Maybe someone at cholangiocarcinoma.org could ask them to add it?
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