Topic: ukmember - you okay?

patricia, haven't heard from you for a while - thinking of you both, jules

Re: ukmember - you okay?

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

Re: ukmember - you okay?

patricia,

I was very upset to read your posting, i am so sorry that you and M have had such a dreadful week.  my dad would empathise with M being reluctant to go into hospital.  I think the thought of going into another NHS hospital terrifys my dad.  I can understand what a relief it was for you both to meet with someone who can help and you feel is on your side - i agree, so many drs seem unable to listen.  they tell you a load of brutal statistics and just leave you reeling and in shock - its like "this is how it is - go away and get your affairs in order" .."next please".. no compassion, no humanity.  It is a great comfort and can really lift you when you find someone helpful.

Patricia, i hope that you have some help and support right now, I think that your husband has been very brave and i admire his determination in the sense that he has always been clear in what he wants and what he doesn't want and not allowed himself to be pushed around, sucked into the system and onto the 'standard experimental treatment'

As for my dad - we have done our research and I feel that the drugs my dad is being offered should help - chemo starts on tuesday, we have a second opinion with prof cunningham at the marsden on weds, my dad is also starting AHCC.  the recurrance was very disappointing so soon after surgery, the battle continues. 

hoping that you have a better week next week, jules

Re: ukmember - you okay?

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

Re: ukmember - you okay?

hi - i agree with you about the NHS - lets face it, the NHS is beyond repair - when my dad had his second op he was in a bupa hospital which was lovely, the nurses were so caring (unlike the aggressive ones you come across in the NHS) - unfortuantly my dad is not insured so he had to use his savings for the op - i know that he is petrified of having to go into another NHS hospital ever - i hope he never has to.  I think that if you have to go into one then you need a relative with you fighting your corner because abuse and neglect is so commonplace.  and as for the food...don't even start me on that!

susan and patricia i am so sorry that you are having to deal with this dreadful disease and watch your loved ones battle it - it really is the pits.  Just venting your feelings on this board helps, i find, nobody else really understands how it feels.  my dad starts his chemo on tuesday, on weds we go to the marsden to see prof cunningham, although treatment for this disease is undeveloped (no money for the drug companies in it - too few people effected) - i think my dad should try some of the drugs being used on pancreatic (it is the same 'family') and 'fast forward' through the process, after all they always seem to end up using drugs proven on the other cancers, so why not just use the most effective drugs on the other cancers now? - i want to ask prof cunningham whether the tumor can be tested to see if it is her2 positive - if so then why not use herceptin? - i also want to ask him about avastin which seems to be used by the people on this board in the states (they are ahead of us on the cancer front) - i'll let you know how i get on..

i hope you both have a better week, jules

Re: 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

Re: ukmember - you okay?

Hi Caroline

Yep steroids have done the trick for mum at the moment, washed her hair today and she feels much better.

Nice to hear from you, hang on in there yourself.

Us carers are a hardy bunch you know, take care, Susan

Re: ukmember - you okay?

good to hear from you caroline - i am hoping that the sorafenib is successful - when do you have your ct?

patricia, susan - thinking of you both..

jules

Re: ukmember - you okay?

UKMember -- I know this is an older post, but the hiccups thing is common in the end. If others are interested there are posts about it on the Johns Hopkins Board.