New UK member
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Welcome Munchin. Dont have much advice but wanted to welcome you. This is a wonderful place for information and though many of us are American, our tenticles are spreading and taking a firm hold in other places as well. There are many people here from the UK (I actually had my original surgery in Edinburgh) who will know the ins and outs and the whos and whats that will be able to help.
Let us know how it goes.
Krismunchkin:
Roller Coaster ride? Wow, I can relate to that as I’ve been on this roller coaster with my husband Tom for over 2 years now. It has been quite an adventure that is for sure.
Welcome to the best site on the internet that I have found for CC patients and their caregivers. Your story is very familiar in that CC is very hard to diagnosis and there are actually not very many doctors who have encountered this type of cancer in their careers, and many don’t know how to treat it! For instance, my husband Tom’s original oncologist told him to go home and get his affairs in order and that he had 6 months. When I questioned him on Chemo and / or radiation, all he said was “It won’t do any good”…
Being that I’m not one to take ‘no’ for an answer, we promptly set out to find other answers and thank heavens we did. Tom underwent radiation and it has all but killed his new tumor.
Keep the faith and remember that no one has an expiration date stamped on their butt!
Prayers are coming your way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret (My husband and Cholangiocarcinoma)
Hi Munchkin!
Fellow UK member here. I too stated with ‘gall stones’. Well, I certainly had inflammation of the gall bladder, but also a tumour in the cystic duct. Fortunately I was eligible for surgery (although the tumour wasn’t confirmed until the surgery) & am currently counting my blessings! My treatment was in Plymouth.
Good luck with your treatment at the Royal Marsden, I have no personal knowledge of their services but they do have a great reputation.Helen is right, the Penny Brohn site does have some excellent info, definitely worth a look, as is her AMMF site. There is a huge amount of info on this site, even for the UK, particularly from fellow ccr’s & carers, I think treatment options are improving here but there would seem to be great differences depending on where you are seen.
Take care, very best wishes, Val
Hello Munchkin and welcome to our Family! You have already been a survivor and a strong fighter and that is the best RX for this “roller coaster” ride. We have some fabulous Family Members in the UK like, Helen, Julia and Pauline and I know you will get some great help in that direction. Wishing you the best with the new Trial and please keep us posted.
Hi Munchkin
Whilst I think it is true the USA have a lot to offer in the field of cc treatments, The Royal Marsden has a very sound reputation, and Professor David Cunningham is the guy to try to get to see there.
After my husband died from cc in December 2000, we set up a charity here in the UK with the aim of raising funds for research into this disease, which is such a cinderella subject as far as research is concerned here. That said, some good work is now happening at Imperial College and at the Royal Marsden’s research centre, too.
Just a thought, you might be interested in having a look at the Penny Brohn Centre’s information (used to be the Bristol Cancer Help Centre) as they have a wealth of information on nutrition, supplements, etc, all of which can be very beneficial. There is a link to this on the Helpful Links page of AMMF, http://www.ammf.org.uk.
With love and positive thoughts.
Helen
Hello, Munchkin & welcome to this wonderful, wonderful family. I’m in London & my sister was diagnosed at Kings; she’s currently undergoing treatment (Gem/Cis, like you) at Guy’s. I have no personal knowledge of the Royal Marsden, except that it does have a wonderful reputation for cancer treatments. Please let us know how you get on.
My sister has had rough times on chemo but, overall, her results are reassuring. There’s no sign of the tumour increasing & the tumour markers are coming down.
I talked to Pauline in London, recently & she’s done LOTS of research on UK options. You could try a “user list” search for her. She’s very kind & very knowledgeable.
I know there are other UK members here & I’m sure one will come on soon to add more info.
My very best wishes
JuliaHi Munchkin,
Welcome to the site, although I am sorry that you have to be here. I am in the UK also, in Dundee and was my dads carer when he had his fight with CC. Where are you based? Thanks for sharing your story with us all. Yes this site and the people here are excellent and everyone here helped me so much when I went through everything that I did with my dad.
I hope that you keep coming back here as you will get tons of support from everyone and I am sure that you will find answers to the many questions that you will have, so please ask as many and all questions that you have. We have members here from the UK, US and from all over the world!!
My dad never had chemo, his treatment was Photodynamic therapy at Ninewells here in Dundee. Perhaps that is something that you can ask your doctors about if it may be an option for you. My dads CC was inoperable and that was the only treatment he had. I know that there are lots of members here who have had the gem/cis treatment that you are having and they will be along soon to share their experiences with it with you.
That sure is a rollercoaster of a ride that you have been on and I think that is very common for both patients and carers affected by CC. Love what you say about not letting this disease have things it’s own way! Fighting talk indeed!!
My best wishes to you,
Gavin
Hi,
This is the first time I have posted to a message board so am a little unsure about what to write. I guess I’ll just tell my story.
In July 2008 I went to my GP with a slight nagging ache in my side – after
ultasound and CT scans I was told to go to my GP who would explain what happens next. Didn’t suspect anything sinister so I went along on my own just expecting to be told I had gall stones or something similar.My GP (who is a no nonsense chap) sat down and told me that there was a mass around my liver/bile duct/pancreas area. I was very calm and said well, I can live without most of those things and the liver can regenerate so it wasn’t going to get me down. Just one of those hicups that life throws at you now and again.
That changed when I went to the hospital and was told that they thought I had cancer of the pancreas and could only expect to live 6 months with treatment. Eeek! I only had a slight stitch in my side! I wasn’t happy with that idea so asked if I could go on a trial. The upshot of that was that I was treated successfully for 2 years on a phase 3 trial until the mass started to get bigger again.
Was then sent to the Royal Marsdon Hospital in London as my hospital couldn’t do anything else for me and my only option was a phase 1 trial (or as they put it – I did have the option of going home and dying quietly) That wasn’t for me so of we went to the Marsdon. Who promptly told me that I didn’t have cancer of the pancreas at all but cholangio. That got me sent back to my local hospital for treatment with Gem/Cis. I have had 5 cycles of this with only a partial response and my platelet count keeps being knocked.
I am now about to go back to the Marsdon with a view to taking part in a phase 1 trial. It has been a bit of a roller coaster ride so far and I know that my treatment options are limited now but I refuse to let this desease have things all it’s own way. I am only 47 and my first grandchild was born at the end of January so I’ve still got lots to do.
This site is a wonderful resorce for information and it is really interesting to read about the treatments you get in the States. The UK seems to be a bit behind with ideas on the treatment of this so it would be interesting to hear from anyone in the UK who has had CC and their experiences. Maybe I’m being unfair and the Marsdon will surprise me
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