katja
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Aww Kris I’m so gutted for you.
Perhaps you could have your own mini Jimmy Buffet concert and create a little Paris at home? I’m not sure what a Jimmy Buffet concert involves however…
Hans could drink wine and adopt a very pro-french attitude (perhaps he could go on strike too), you could do as french women do and eat very little, find a cute cafe nearby to while away the hours? Hans could drive like a loony on the way there…
I know nothing would make up for it, but we’ll all be hoping for you and your surgeon to kick butt on monday.I agree tlsinftl – it is helpful when people add a tag line like yours as part of their profile – I immediately know how you came to the site. Sometimes it’s difficult to piece someone’s story together.
Andie,
Is there a chance that your dad could now get into this trial? I suppose they are aiming to give him gem/cis if his billirubin gets low enough?
KateThanks Gavin,
This is very interesting. Although my dad seems to be lucky to have been on a chemotherapy trial after his surgery, I suppose I do wonder why there is never any suggestion of radiotherapy in the uk. Many americans seem to get chemo and radiotherapy.Hi Victoria,
I read the website and a little googling. It does sound almost ‘to good to be true’ – does that usually mean something is? My thinking would be that there must be some fairly formidable/dangerous side effects which I suppose the payient has to look at how much they can gain (my brother calls this cost/benefit analysis and it can be applied to everything).I can’t help with any trials but I’m sure you’ll be cautious when dealing with anyone who stands to make money out of Ned. Seems to me that Governments so stringently ban these things (in the wake of thalydomide scandals etc) there must be some reason… But one could also point out that the money to produce cancer drugs comes from the big companies, and so does the research etc.
I’m reading the anti-cancer book by David Servan-Schreiber which is very interesting. Most of what he says ties in with what Andy and Linda recommended recently in the alternative therapies section of this site.
Best wishes to you and Ned
KateKris makes a good point, Linda,
You might have more luck searching for a liver specialist (especially through Google) who might either also specialise in CC or might recommend someone?
Good luck, you deserve some. Hope someone turns up very soon.
KateRandi
I cannot believe this is your 3rd cancer – how much does one person have to deal with?
Here’s to your continued recovery and beating your third cancer.Gemzar (gemcitabine) is administered intravenously and is a chemical which basically stops tumour growth by attaching to the cancer cells (and other fast multiplying cells) and encouraging them to commit ‘cell suicide’.
Xeloda (capecitabine) is given in tablet form (usually twice daily) and works slightly differently in that it targets the cancer cells and then transforms itself in the cell to stop it from growing.
The two work along similar lines but are not the same, for example a regimen called GemCap can be used for pancreatic cancer.
It frustrates me when doctors tell people different things – where is your doctor getting his information from that only Gemzar should be used for post surgery treatment? There have been no studies to prove this. My dad has just completed a trial of Capecitabine for post surgery treatment (BilCap is the name of the trial).
The problem with cc is that investigations are going on all the time and no one knows which combinations work best. Usually members on this board agree that they would like to see some chemo post surgery, if only to know that you have done all you can to prevent a recurrence. It often is a matter of doctors opinion (esp here in the UK, where you really do have to go with what your doctor suggests).
Hope that helps.
Yes Ray,
My dad is finishing his 8 cycles of Xeloda tomorrow. By cycle six he was so dizzy and his blood pressure so low that the doctor said to stop all his blood pressure medications (that he’s taken for probably 5 years). This stopped the dizziness. On his off week his bp goes up to around 150/100. The doctor said the bottom number is slightly worrying, but didn’t restart his medication.I personally have low blood pressure (usually around 100/50) – it’s annoying and makes me dizzy, but I suppose it’s better than high?
I’m glad you’re feeling good otherwise – have you tried using udder balm for hands and feet – it’s really helped my dad. He also suffers with diarrhea – codeine phosphate seems to help.
KateWishing you both the peace and comfort you deserve.
Teddy has done a remarkable amount for all cc sufferers and touched so many lives.
Hi Gary
This is exactly the kind of situation where I’m so glad for the NHS. I can’t even imagine how you all must have felt when the surgery was cancelled – it’s Donna’s chance for a cure! I’m so sorry for you.Just two points I got from your story – the surgeon said it had spread ‘beyond the bile duct wall’? That doesn’t stop surgery – did he have to stop because of the portal vein involvement? A second opinion from someone who has seen more than ‘a few’ is vital. If he did a Roux-en-y then I suspect it’s a Klatskins tumour, not heard of them as often for distal tumours.
The other thing is you say you think she’s at stage IIIb or IV? Is there evidence that it has metastized elsewhere? i.e distant mets like lungs? Because if this is the case then it probably would preclude surgery. I believe it’s really important that Donna can start some chemo soon (GemCis being standard), in the hope it can shrink or stabilise the tumour.
I really hope that you can get some answers and treatment consistency soon,
Best wishes
KateFantastic news Gerry! Did your surgeon get clear margins and no lymph nodes involved? Time to celebrate!
Hope your whipple recovery is going well,
KateWelcome back Lainy and Teddy,
So glad the trip was everything that you both wanted from it. How lovely that everyone gave gifts.
Since Pam has decided you are having Kris’ cats, then maybe you could also take 2 noisy dogs from me to complete the picture?!!! They’re driving me round the bend.
Kate
My dad is coming to the end of his chemo for the BilCap trial, testing Capecitabine after successful surgery. He has taken 8 cycles of 2500mg tablets morning and night, and the only real side effect is the diarrhea (he takes immodium and codeine phosphate). He manages the hand and foot with udder balm.
A clear scan last week was such a relief to us all. I’m so glad he’s been on the chemo arm of the trial. My dad said to the doctor ‘of course we don’t know that the chemo did anything’, to which the doctor siad ‘we do base these phase 3 trials on evidence. I think this will prove to be statistically significant’.
I’m so hoping that capecitabine proves to be effective enough for a standard of care in the UK – otherwise patients will continue to be denied any chemo after surgery.
