European CC community – Please help

[purifieron]

I am so sorry to hear this. Yes, the option might be extensive surgery in the United States, however, i have heard that some expertise in shanghai, china is great. You may want to do some research if you wish.

[marions]

Maggie,

my heart breaks for you. Words cannot express my sorrow.

Please, accept my deepest sympathy.

Marion

[kate-g]

Love and best wishes to you and your Mum Maggie xxx

[sara]

Maggie –

I am so sorry to hear of the news about your mom.

My good friend did oxaliplatin, and later added in the 5-FU. The oxaliplatin was actually the first chemo she was given, and she achieved mild shrinkage from it. (It shrunk her large tumor by 17%) It did decrease the pain substantially. It also has some different side effects – most notibly the increased sensitivity to cold. It’s also known for decreasing the feeling in your extremities (impacting finger dexterity), and I believe this side effect can be permanent. She didn’t do the 5FU for very long, so I cannot really comment on it. But there are many others on here who have included it in their chemo regime.

Whether or not to head down this road is a personal question. The reality is that it’s not a cure. These drugs may help by slowing the tumor growth, thereby cutting down on the tumor pain and possibly giving your mom more time. The effectiveness of the drugs seems to vary greatly across all patients. Your mom may tolerate the side effects very well, or they could make her quality of life decrease significantly. I wish I could give you a clear answer on this, but unfortunately there is no clarity with this cancer. All I can say is that towards the end, my dear friend was so weak that her last chemo treatment almost took her from us. After her two week stay in the hospital, she opted to stop the chemo and try and enjoy what little time she had left. It’s a balancing act.

Please know that we are all thinking of you and your mom.

[alison]

Maggie

Very sorry to read your bad news, sorry cannot offer an opionion on 2nd line chemo , it was not offered to us , Gemcitabine (gemzar ) was our only option.

Make the most of the time with your Mum

Best wishes for the furure

Alison Jons wife

[maggie]

Hello everybody,

Thanks for all your help so far. I sent out my mum’s scans to numerous cholangiocarcinoma experts and many have been very helpful.

Unfortunately, things here have gone from bad to worse. My mum’s previous scan (Dec 12) showed that there were 2 tumors in the hilum of the liver. However, her scan yesterday showed that there are now multiple new tumors throughout the liver. As the disease seems to be progressing very rapidly now (after a good initial response with Gemzar), her doctors think that she may only have a few weeks left. Obviously this was very distressing news for us.

As a last ditch attempt we are looking into second-line chemotherapy (5FU and oxaliplatin has been suggested to us) or photodynamic therapy (PDT). At the moment, her quality of life is reasonable as her doctors are working on reducing the lower back and abdomen pain (mainly at night) and the nausea.

I’m not sure whether the potential benefits of second-line chemo would outweigh the risks. The last thing we would want to do is to reduce her quality of life with a treatment that only has a tiny chance of having any benefit.

Has anyone here had good results with second-line chemotherapy by any chance?

Thank you all for your help. This website is a great comfort and support line for me and I wish you all the very best.

Maggie

[alison]

maggie

Good luck with your referral to Prof lodge , he and his team are wonderful you could not be in better hands

Alison

[maggie]

Hello all,

I hope you all had a good Christmas. Thank you so much for your prompt replies! I have sent my mom’s CAT scan images to Peter Lodge in Leeds. I will keep you updated on our progess.

Thanks and best wishes to you all!

Maggie

[anna]

My father-in-low was operated two times in Warsaw , Poland in the Public Central Teaching Hospital of Medical University of Warsaw . First time there was removed a fragment of a liver about 8x6cm . The second surgery was mixed – they cuted out one of the tumor , second and third were thermoablated ( one was just near the portal vain ) . The hospital and docs are great . My fathers doctor is m.d. Fraczek from the liver surgery and transplant medicine department .
Best
Anna

[marions]

Maggie,
Sometime ago I had pulled several studies on CC which were conducted in France however, I was not able to locate them today. I know that this surgery is being performed in France also. Just another tip.
Good Luck
Marion

[sara]

Maggie – I am also very sorry to hear about your mom. I hope you are successful in finding a route to have the tumor removed.

I echo both marions and stacie – Prof. Lodge is the doctor in the UK who has performed several surgeries on the liver when other doctors refused to operate. I know I’ve read posts on here indicating that he’s had protal vein involvement in the past, and has proceeded to move forward in operating.

As far as bringing a patient into the US for treatment – this is done regularly, especially at the top cancer centers. Try contacting admissions at these hospitals (MD Anderson – Houston, TX, Sloane Kettering – New York, NY, and Mayo Clinic – Rochester, MN). I imagine that they will be a big help regarding the process.

[stacie]

I think you are looking for Prof. Lodge.

[marions]

Maggie,
I am so very sorry to hear about your mother.
I don’t personally know of anyone who came from Europe to be operated here however, Geoff and Jules speak highly of a doctor in England who performed surgery on Geoff. You might want to look at their postings and or e-mail them personally. Make sure to gather all of the reports (CD) and start contacting surgeons who have experience with CC. Study this site for information, it is an invaluable tool in the fight against this cancer.
The best of luck
Marion

[maggie]

Hello,

I have been visiting this site daily since my mother was diagnosed with CC in April 2006. Her general health was very good, so the CC diagnosis came as a complete shock to us. She is 54 years old and has 2 tumors (4cm diameter) in the hilus of her liver. The tumors are on either side of the portal vein, i.e. the main vein that comes out of the liver. She lives and is being treated in Belgium. She started Gemzar infusions in May and the Gemzar caused both tumors to shrink by 1cm. However, recently the tumors became resistant to the Gemzar and they have grown again by 1cm and are continuously growing.

The tumors are pressing heavily on the portal vein. If we don’t relieve this pressure on the vein ASAP then she will have liver failure. Her doctors in Belgium have little or no experience with CC and they are hesitant to operate. Does anyone know of a surgeon in Europe (or even in the States) that has experience with CC surgery and more specifically with CC surgery with portal vein involvement?

Being a research scientist myself, I realize that extensive surgery is now our only option. As I live and work in the US, I am also considering bringing her here for surgery. From what I can see, CC treatment and surgery is far more advanced in the US than Belgium.

Has anyone had experience with bringing people over from Europe for surgery in the US? CC community members, I would really appreciate any input, thoughts or advice on this matter.

I wish you all strength and courage in your battles with CC.

Maggie

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