ukmember – you okay?

Dear Jules, Patricia, and Susan-

Just a note to say I’m thinking about you three in England. My doctor says chemo is not on the horizon for me for a while. I think he’s getting some clinical trials set up in Grand Junction, Colorado, so that those will be available there if the Sorafenib doesn’t work out which we really won’t know until July, two scans from now. If a second clinical trial doesn’t work, then I’ll probably go onto chemo. I am trying to make notes from this website about what chemo is the best, but I haven’t really sorted it out yet. My oncologist (or was it the surgeon?) said chemo works 35% of the time (at best) on cholangiocarcinoma. Since we have a rare cancer, I’m sure it doesn’t get the research dollars as other cancers. Someone has to be in that 35% that the chemo works on. And it does seem that there are many success stories on this site. Maybe people who talk on the internet have a higher success rate than those who don’t talk about it. Who knows. There’s a study at University of Kentucky about the use of the internet and cancer. If you go to my blog from this site, and check the comments on my April 27th post, you should be able to link to that survey if you’re interested.

Anyway, I hope each of you has some time or support for yourselves. I know my husband probably needs a break from me sometimes. I try to encourage him to do some things for himself. Each of you has done so much for your loved ones – you
have been wonderful!

Guess that’s it for now. Hang in there. Sometimes it gets better. Steroids have been great for me. My friend who has beat the odds with pacreatic cancer mentioned tarceva as helping. Patricia, your integrative medicine doctor sounds like a good choice at this time. Hope we all have a “rally” here soon.

-Caroline Stoufer

Hello Jules and Patricia

I too can sympathise, I seem to be going through the same as you Patricia.

Mum has been given steriods in the last 5 days and seems to be picking up on the eating side.

However, she is still extremely weak, I am hoping that with food everything will build back up again. It is good to feel optimistic again, however, she seems not to want to go anywhere, she seems to feel too safe at home.

I agree with the NHS, mum went downhill very quickly because she didn’t like the food, so next time we will try to get her in and out as quickly as we can.

Take care everyone, Susan

No not really. I have had a bad week, since last Thursday day when M went into hospital to have his ascites drained. They kept him in overnight because his blood pressure was low after the procedure – which he hates; he can’t sleep loathes hospital food and just gets more and more irritable. In the end they let him out on Friday.

Sat, he slept most of the morning which I worried about and he didn’t eat and had an attack of the rigors (severe shivering) which is often the sign of an infection. I worried that his blood pressure might have gone down again, so I asked a friend who is a doctor to come over and take his blood pressure. It was very low so I phoned the duty oncologist and he said call a blue light ambulance!! When I told M he had to go back into hospital he flatly refused. I checked again with the oncologist and he said he should come in and if he had an infection and low BP he could have a stroke.

Anyway after a great deal of persusion we finally convinced him to go, which was just as well because he had a very high white blood cell count and a nasty urinary infection. The kept him in on an IV antibiotic and rehydration fluids for 2 nights.

Now he is back home but not well. He sleeps most of the day but what worries me most is that he is hardly eating. At least today he is drinking — for a couple of days he was barely drinking – a factor which contributed to his low BP He is so thin, I can feel all his skeleton and still he can’t eat. On Wednesday he had a very bad attack of hiccups and burping for 2 hoursand brought up mucous and froth (Does anyone else have any symptoms like this?) Then he was sick – despite having nothing in his stomach and brought up what looked like dried blood in the mucuous. This was horrible he was in a great deal of distress – fortunately no pain. Today he had 2 spoonfuls of yoghourt, a cracker, a bit a blended fruit and some lentil soup and a little bread and butter. The hiccups are continuing but despite getting something from our GP to treat it, he won’t take the medicine. He can barely stand and his voice is very soft and breathy.

I have no idea what to expect. Couls he just gets weaker and weaker. I have read that 30% of cancer sufferers die of starvation. Or could this dip be followed by an improvement? Does anyone have any idea?

On the brighter side on Thursday we made a trip to see an integrated medicine practioner. She is a qualified doctor who believes in both orthodox approaches (where suitable ) and complementary treatments too. What a relief!!!! She listen to us for an hour and talked about all the possibilities and for the first time since this whole things started we felt we had someone who cared and was interested in helping M heal. You know his NHS consultant so you can imagine what a relief it was after him

M had a blood test which has gone off to Greece for analysis. This will tell us what treatments both orthodox and alternative are likely to be effective. WE will discuss the results with her in 10 days time and then start with appropriate treatments. I have confidence in her and trust her which is a new feeling. Let’s hope M will be strong enough to go forward with this.

I was really sorry to hear about your dad, I wanted to respond at the time but as you can see things have been very difficult here. I hope the chemo goes well and that both you and he can keep hopeful. Best wishes to you both
Patricia