Starting Sorafenib next week

Dear Randi,
My family and I are so very sad to hear of your Dad’s passing. I have been following your posts regularly and I would like to let you know that your Dad has touched our lifes a world away, in California.
All our love
Marion

Randi

I am so very sorry to hear about your Dad. You were a wonderful advocate for him and it must be a great comfort that you were able to bring him home and fulfill his wishes.

I am shocked to hear that you now have a health scare, I hear this so frequently from those supporting and caring for those inflicted with a life threatening disease, it really does take its toll. I do not understand the tumor markers enough to advise you, I can only hope that this is a false alarm – that somehow your body is reacting to all the emotional stress.

My thoughts are with you, please keep in touch

with kind regards, Jules

just to add to my dad’s posting above – I have been reading alot about metal stents coated with chemotheraputic agents including carboplatin as being effective, worth considering for anyone considering a stent I would have thought….

Jules

Hi Patricia,

I’m so sorry about your husband . I read all your messages and feel deeply sorry . I agree that this is an awful disease .
My mother is cc and she is 71 years old. We’ve known about it for 2 months . We’re walking through a dark road which we do not know how bad things we will come across.
When it was diagnosed two months ago, because of her advanced age the doctors did not advise us a surgery . On the other hand, we are also not advised a chemo by the oncologist .
They only said that leave the disease to its own course.
And the disease is progressing day by day .
She is eating very little and has temperature around 38 but not everyday . We give paracetamols and she is feeling better then. Also she has some abdomen difficulties.
She has asciditis and this makes her uncomfortable .
Patricia , do you recommend to drain it ?
In one of your messges, I read about the Vitamin K is very good .Our oncologist advised us to apply it once a week. I hope she can feel better. It also prevents internal bleeding the doctor says.
She also takes Milk Thistle every day .

She doesn’t know anything about her disease and waiting to get well soon and making plans for the future and this makes me terribly sorry..

Do you have any comments on my mother’s case ?

I wish you all the best Patricia and healthy days for you and for your family.
Take care , Figen

Dear Patricia.

I am so sorry to hear that your husband is not here anymore. You are so right it is an awful disease. My dad is beginning to get jaundiced again but he is not keen on being admitted to hospital so one day goes by after another. So I dont know what to expect. Last time he was in hospital they said that they didnt think his body could tolerate more ercp procedures so we dont even know if they would consider changing a drain if he gets more jaundiced

I wish you all the best and please keep writing telling how you are doing.

summer greetings from Ranner

caroline

I have been thinking of you, I am glad that you are tolerating the gemcitabine well. It sounds as though you have a good oncologist who is open to exploring new treatments, i think that this is half the battle – to find a doc who is willing to go for aggressive treatments – so many of them are dismissive of cc patients (we have come across good, bad and indifferent).

i have not heard from patricia recently – she very kindly emailed me some info just after she lost her husband, i do think of her often. I have not heard from susan either (i think thats who you mean – her mum is fighting cc) – she has not posted on the site for a while..

my dad is doing really well, other then a recent irritation of a hernia which has caused him a bit of discomfort. saw a surgeon who has reccommended a surgical belt as it would be difficult to operate after 2 major abdominal ops – other then that he is doing fine – he has a really good appetite, is active (goes out for long walks every day). The last scan said the tumors were not growing, so as long as the chemo is halting the disease i think we will stick with it – my dad has an option of a clinical trial at a later stage.

avastin is a great drug – has shown activity against every other type of cancer and is well worth exploring and going for – the only reason they say it is contraversial is because there is no evidence of it working against cc (this shouldn’t be a reason for not giving it – they know it works on every other type of cancer – not enough research has gone into cc)

the drug in the trial that my dad has been offered is “the next avastin” – AZT71, i think it was called..the oncologist we saw about it said that it was showing “miraculous results”. I don’t know that much about davant – certainly sounds worth looking into – seems to be a lot on this site just lately about it…

oxyplatin is a 3rd generation platinum drug – a friend of mine had it with gemcitabine for pancreatic 4 yrs ago and is still alive and kicking (at the time he was given 3 months) – another good drug.

everybody here is world cup/football mad at the moment (apart from me) – at least it is a distraction for my dad..

thinking of you

– jules

caroline,

how are you getting on with gemcitabine – my dad is on gemcitabine and carboplatin – his oncologist has said that the tumors have not grown. The chemo wipes him out quite a bit – he has been given steroids to take for a few days post chemo, they said that the steroids taken with the anti nausea drugs works more effectively. – they gave him a real high and as my dad was not getting any nausea he stopped taking them.

What was the name of the ‘contraversial’ drug that you metioned? – are you going to add another drug in with the gemcitabine?

jules