XL119

Hi Jules,

There is a trial going on in Leicester under Prof Stewart, one of many trials world wide. I will post the number of the research nurse later in the day. I am at work now.

Did you father manage to make an appointment to see Dr Cunningham?

How is he generally?

Patricia

Patricia,

thanks for the info.  I think this drug looks hopeful.  How is your husband?  It must be a worry for you when you are at work.. do you have any support at home? - my mum feels very isolated - some people avoid you, i think they feel embarressed and don't know what to say - the best thing they can do is just listen.  My dad just seems to want to talk over the illness, the operation etc..over and over, i can understand that this is helping him to make sense of it all.  My Dad is finding it hard to live with the uncertainty and is depressed, i find this hard to deal with sometimes as i just want to make the most of the time we have, however i can't really imagine how it must feel for him.  He still gets really tired and is troubled by a persistant cough which drains him other then that physically i think he is doing okay.

kind regards

Jules

Patricia,

thankyou for your message.  I think that you have such a positive attitude and I admire your approach to this.  I agree that to have a support network is so important.  Unfortuantly my dad does not have such a network, he took early retirement when he was 53 and his passion since then has been sailing, now that he is not fit enough to sail he is very depressed.  He would never be willing to do anything other then be skipper and in charge!
I am 35, have 2 brothers who I never hear from and my parents only get the occaisional phone call from them.  My dad has refused visits from friends as he feels they are coming 'out of curiosity' - my dad is a very private man and is unable to discuss how he is feeling, it makes perfect sense to me that the whole body and mind needs to be treated and it must help to be able to talk openly about how you are feeling, however i keep reminding myself that i can't really appreciate how my dad feels.  My dad was really poorly before he would agree to any treatment.  His faith was in the NHS, he had health screening privately about 3 yrs ago which picked up abnormal liver function, he then was seen by a liver consultant on the NHS for 3 yrs who put his liver problems down to 'alcohol damage' despite the fact that he'd never drunk to more then the occ glass of wine - even when he was admitted to the local hospital in Jan 05 with abdominal pain they failed to spot the fact that he had a tumor covering about 60% of his liver, they discharged him saying they didn't know what was wrong with him, my dad then progressively got worse - he became jaundiced, was in pain, could hardly move, could not eat and was in agony with the itching and fevers.  He went back to his GP who claimed that he didn't know what could be wrong with him, but would try to get him a scan on the NHS, eventually i persuaded my Dad to have a scan done privately and it was not until july last yr that this was picked up.  My Dad does not have health insurance and has had to use his life savings to pay for scans, treatment, operations as we have been told that he cannot wait for NHS treatment.  I think that you are wise to go to France - I believe that in theory you should be able to claim back cost for treatment from the NHS when you return - a case recently went before the European Court of Justice concerning a lady who had a hip replacement in France as she could not wait forever on a NHS list.  I think the NHS just cannot cope with the pace of modern medicine and that the system is crumbling, I would pursue these alternatives if i were you..

I appreciate our exchanges on this board and thank you for your kind words and encouragement, i don't feel quite so alone.  I hope that i can be of some comfort and help to you too.  I am thinking of you, your husband and your family every day.  Take care,

Jules

Woody

You say that the XL119 Ph3 trial is being changed to open status.  Please could you provide a link to the source of that information ?  Reason I ask is that I live in the UK and there is an XL119 trial here too but I declined to participate because half the participants get 5FU rather than XL119 and of course being a blind trial they don't know what they are getting (not sure how you managed to find out).  If the US trial has changed to giving all participants XL119 that could imply that the results so far show significant benefits from XL119, as you say very good news.

Thanks

Geoff

Any new information on XL119?  My mom has been battling cholangio since Nov 2004.  12 rounds of chemo (gemcitabine & cystplain) reduced the size of the tumor such that she could have triology radiation.  This was completed in 1/06 at Stanford.  She has clean CT/PET scans until August, last month.  There are new tumors.  The Radiation Oncologist doesn't have anything more from her.  We are meeting with the Oncologist on 9/28 and looking for anything new to pursue.  Thanks!