Recently diagnosed, our journey so far.
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Hi,
Sorafenib is a multi-kinase inhibitor(TKA) ( in short, it works through multiple pathways to slow or stop the growing of the cancer cells in the liver); it works for cholangiocarcinoma too.
It was recommemded to me by a well known liver specialist at Mayo Clinics when I went for my 2nd opinion in case my current chemotherapy agent Xeloda stop working. However the shortcoming of most of these oral TKA is drug resistance will develop relatively quick and you may need to switch to another kind of TKA to continue the treatment.God bless.
Kate…great job.
We have some previous postings on Prof. Lodge
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5250
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=477Good luck,
Hugs,
MarionThanks for then info.
I have sent what info I have (original referral letter with written CT scan results and blood results) to his secretary so I hope to hear back soon.
Has anyone been treated by him before on here?
Thanks again
KateKate….Sorafenib is mainly used for Hepatocellular Cancer however; it also has shown to be quite tolerable for CC patients.
I would push hard for a consultation with Professor Lodge.
Hugs,
MarionKate,
A search on the site for Sorafenib threw up these discussion here –
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1358125423
Gavin
Hi Kate,
Sorry to hear that your mum is still experiencing this pain. Is she taking anything for the pain? My dad had a metal stent and the only pain he really got from it was a sort of jagging pain every now and again in his side, but he did feel more pain when he slept on his side where the stent was.
Here is a link about Sorafenib that has a lot of info on it, hope it is of some use to you –
And I think that contacting Prof Lodge is a great idea. Please let us know how that goes and I so hope that your mum gets this pain under control asap.
Best wishes to you and your mum,
Gavin
Marion,
Mom has a metal stent. Today they said they don’t think the pain is from the stent.
I’ve just looked at the tablets are sorafenib I think. Do you know what they are? Do they have many side affects?As per Andie’s post above I am going to contact Professor Lodge from Leeds.
Thanks
KateKate….does your Mom have a metal or plastic stent? If I recall correctly, the stent was inserted in October hence, it could occlude with debris and sludge and cause infections.
Pain due to the tumor invasion has been reported frequently hence, I would adhere to the physicians recommendation re: medication. The oral chemo pill, is it Xeloda?
Hugs,
MarionHi Guys
Thanks for your responses.
Just an update for you, Mom went back to the hospital last week to talk to the doctor about the pain she was experiencing. He suggested it was still from the infection so presribed her another course of antibiotics.
After another week on the antibiotics and no subsidence of pain Mom has gone back today. We managed to get an appointment with the registrar today and said the pain shouldn’t be coming from the stent. I think they are now thinking the pain is due to the tumour itself. My Dad was with her today and he has told me that the Dr said the liver could be stretching do to the tumour? Has anyone heard of this? Does this mean that the tumour is becoming aggressive and growing? Mom has been off chemo now for around a month and has a scan 12th June.
They have today presribed her with some steroids to perk her back up so she begins to eat/drink/function more normally and they have also given her chemo tablets. Unfortunately I do not yet know their name.
Safe to say I am now worried that her conditon is not as stable as we first thought.
Any thoughts/experiences are greatly welcomed.
Thanks in advance
Kate
A few links on fatigue for you Curlywurly –
http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/fatigue/index
Hope some of that is of help to you.
Best wishes,
Gavin
Hi curlywurly35,
I just want to say hello and welcome to the site. There is great advice and support here and someone always comes along to help.
I am also in the UK, north of the border like Gavin. My sisters CC was inoperable and from the outset she suffered from fatigue. She never had chemo either and I understood that for her the fatigue was mainly due to her poorly finctioning liver. Infection was also a recurring problem as she had a stent and a drain but antibiotics usually did the trick.
For the pain, things can change and I would suggest if its a new pain then get it checked.
Here and the AAMF website Gavin mentioned are both worth there weight in gold.
Hello my dearest Lainy & Marion!!
Even though I don’t post as often you and the rest of my cc family are always in my thoughts. The bond we have is way too strong to break.
I keep in touch with a few of my cc family on facebook, hence Gavin getting in touch with me about CurlyWurlys post. If you have FB please add me (Andrea Fear was Clark).
I won’t take up the post here so will post in the members section
Love and (((hugs))) xx
Thanks Gavin for reaching out to Andie and thanks to you, dear Andie for following up on Gavin’s request. This is what it is all about – kindness and caring. I am in awe of you both.
Hugs,
MarionOMG! It’s my Andie!!! Hello, sweet Andie! If you all will forgive me, this is one of my Babes! Andie, Jenn and I took our Journey together. Andie thank you so much for stopping by and offering your great advice to Curlywurly! You are so missed and I hope you are doing well and that MuM is locking the front door. Jenn stops by now and then. I just told her not long ago, I miss Andie. Your advice is superb and I am thinking if possible you and Curlywurly could maybe meet in person? My best wishes to you and your family!
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