katja
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Matilda,
You mentioned that the chemo seems to be working for your father – have the doctors told you how they know that? And they keep him on the chemo even though he is having some heart problems? Do you know which drugs they are giving him?
In the UK we have a charity called Macmillan which does amazing work, including counselling with patients and carers. I wonder if you have anything in Italy like that. Your father’s reaction sounds normal, at first I remember my dad wouldn’t let us push the doctors for anything, and he would send us home from hospital so we didn’t see him struggling. You are already doing everything you can to help him, and he’ll be proud.
Hopefully the chemo will be having a real impact on the cancer.
Stay strong,
KateMatilda,
I have to agree with Kris, I think she puts it very well. We are in the UK and PDT has not yet been mentioned, so I’m not sure how you would go about finding out about it. I would imagine it would be incredibly expensive.From the little I know about PDT it does have some fairly debilitating side effects, having to stay completely covered up in a darkened room in a foreign country would be an extremely difficult time for your father.
I hope you find some answers, have you read medical journals online in an attempt to find out when and if PDT can be effective?
Kate
By the way, I bought some ‘Udderly Smooth’ for my dad. He thinks it’s brilliant on his hands and feet, and I’ve read that it’s much preferrable to treat it in a ‘proactive’ kind of way, even though he hasn’t suffered too much yet. I bought ‘hand’ and ‘foot’ separately, but he thinks I was swindled as both creams have identical ingredients…
Linda,
My dad has just finished his first round of xeloda with just a bit of numbness in his fingers. He also has a kind of rash on his face and looks a bit flushed especially his forehead. He doesn’t seem concerned but we will be asking the onc about it this week. I have looked around for side effects with Xeloda but this doesn’t seem to be mentioned anywhere. My dad has had the rash for probably a week without it getting any worse.He has really noticed his energy levels upping since finishing the first course of tablets last tuesday. I hope the same happens for you, will let you know what they say about the face!
Kate
Hi Kate,
It’s such a horrible thing, I’m so sorry for your loss.My mum lost her mum to CC in her early 60s, and now my dad has it at 59. My mum has found it incredibly hard, knowing the suffering that my grandma went through. She says she felt so bitter to lose her at what seemed so early an age, and so this time both my parents are trying hard not to be angry. Very difficult though.
I hope that you find some peace, professional help might just make the difference.
Best wishes to you and your boys.
KateMarion,
I find this very interesting. Although as you say a small group it does give some hope particularly for my dad’s trial.
Thank you for posting it. I can’t seem to access ASCO’s abstracts at the moment. I agree with Gavin and Lainy, your work is absolutely tireless.
KateIt was my dad’s birthday today (59). He took us all out for fish and chips (supplemented his with a creon!), and has been eating cake and all manner of treats. The only thing he didn’t have was the guinness (he likes to share his birthday with the Irish!) but that was only because we didn’t have any…
Having finished his first set of chemo he is doing amazingly, helping to get things ready for my baby (due in a week or so), and still walking miles with the dog. The only side effect he notices from the xeloda/capecitabine is a rash on his forehead, I wonder if this is connected to the ‘hand and foot’ syndrome which is often experienced (got him some udderly smooth balm for that which is doing brilliant on feet and hands).
From what I’ve read the capecitabine is generally fairly well tolerated, especially on it’s own.
Kate
Hi Isisman
Just wanted to let you know that my dad had the same op in January, with seemingly the same results. Here in the UK the standard approach has apparently just been ‘wait and see’ with regard to recurrence.
My dad has got on a trial which tests chemotherapy (xeloda) against surgery alone, which feels like a relief, although of course we have no idea if the chemo will actually do anything…
I believe there more options for the nausea of chemo, it’s just that they are more expensive and doctors can be pressured not to prescribe them – so keep pushing!
Kate
All the things you suggest sound like infection – temp etc. I hope the IV antibiotics will start to do the trick soon.
How long will it take for the results of the scan?
Thinking of you and hoping the docs can help Tom out over next few days.
KateYou’re right Marion, the word ‘trial’ can be scary. For us in the UK it seems to make sense, as there is no other option for chemotherapy, without the trial my dad would be only under observation by his surgeon. At least if he had been on the ‘expectant’ arm of the trial he would have had more scans, blood tests etc. And there is the feeling that you are doing something very small to help in future.
My maternal grandmother had CC too, so I probably had not had as strong an impression of it’s rarity. It seems unlikely but I occasionally wonder on the implications for my brother and I.
As for the fish and chips, he insisted! He seems to be able to eat pretty much anything now, remarkable recovery. He asked the surgeon about missing the creon sometimes, and he seemed to find it hard to believe, but there don’t seem to be any adverse affects… Hoping the chemo doesn’t knock his appetite down.
It’s been frustrating having surgery with a name, which is so rare. When my dad had to go back to hospital with an infection a week after his whipples they had him waiting (so patiently) for four hours in a hard chair, since no one understood when he said ‘I had a whipples last week’. One doctor even had the cheek to say to him ‘There are poorly people here, that man had his appendix out’.
My brother said he wondered if they thought my dad was hallucinating about ice cream!
Hi
Just to let you know that my dad was accepted onto the trial and in the chemo arm. That means he’ll be having Xeloda (8 cycles). He starts it today. Saw the tablets, they look quite big and he has to have 5, twice daily. This is the same part of the trial that Ron Smith tried, although he had a bad reaction. The onc said that they are having problems recruiting people and so the trial will be staying open longer than originally suggested (I wondered if it is because you have to start the trial within 12 weeks of surgery and many people are not well enough? Or if whipples type surgery is rarer than I thought).In the meantime, my dad insisted on trying fish and chips, since it’s the one thing people have suggested he might not be able to eat after his whipples. In his words ‘I just want to see what happens…’ So I’ll let you know how that goes! I suggested he take two creon before that.
If anyone has any advice about Xeloda I’d appreciate it, although the docs and internet have given us pretty comprehensive info.
Thank you
KateLainy wrote:Kate you are right about the Scan in the USA. In December when I thought Teddy’s insurance would not pay, I got on the phone and found a place that does PET Scans for about 1,500.00. Of course the Insurance Company came through at the last minute. Very interesting things he told you on the other stuff.Does the insurance company pay up for most things associated with CC? It must be terribly worrying if you have not got the right cover?
Another thing they asked my dad was ‘have you ever visited a sex worker?’.
Dad works for the education authority and with education/social workers/sex education teachers etc and said ‘of course, they just sit around the corner from me in the next office’ in some confusion. The doctor was equally confused until they figured out that my dad doesn’t share his offices with prostitutes.
Margaret, I just wondered how Tom is, are things any better from last week? My dad starts on his Xeloda today, so getting him stocked up with udder balm, blueberries, gatorade, and all manner of things that I’ve read about…
marions wrote:These are some of things I have learned:
Known risk factors for cholangiocarcinoma include
primary sclerosing cholangitis (an inflammatory disease of the bile ducts), congenital liver malformations,
infection with the parasitic liver flukes Opisthorchis viverrini or Clonorchis sinensis,
and exposure to Thorotrast (thorium dioxide), a chemical formerly used in medical imaging.
However, most patients with cholangiocarcinoma have no specific risk factors.
Approximately 7,200 new patients are diagnosed with cancer of the biliary tract (the gallbladder and bile ducts) each year, in the US. It is the second most common cancer of the liver and approximately, each year, about 3600 people will die of biliary tract cancer; accounting to about 1% of all cancer deaths.
When Pauline and I attended the World Conference of Gastrointestinal Cancer in Barcelona we learned that the occurrence of Cholangiocarcinoma is estimated to be near 3% world wide.
Multiple studies have documented a steady increase in the incidence of intrahepatic cholangiocarcinoma over the past several decades with the reasons unclear. Improved diagnostic methods may be partially responsible. Taiwan has the highest incidence of this cancer.
Just a few more thoughts to share with the hope that others will follow with more information.
Best to all,
MarionTwo or three things that our surgeon said at Leeds struck me as interesting 1. There is a ‘mini-epidemic of CC’ along the Humber estuary of the UK, which is where lots of petrochemical and manufacturing industry has been situated.
2 He also said that in the US it is possible to pay for a scan even without being referred with symptoms, so some people are having it picked up much earlier.
3. He was also interested in the fact that my dad’s father had returned home jaundiced from WWII – he had put it down to hepatitis of some sort.
