1 (edited by jules Thu, 26 Jan 2006 16:56:23)

Topic: XL119

Hi, I notice from the chart you have compiled for this site that XL119 is the only drug specifically for cc - does anyone have anymore info about this - eg how effective it is/side effects experienced etc.  I am trying to research chemo as i expect my dad may have to start some soon (he had resection 3 months ago).  many thanks, Jules

Re: 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

Re: XL119

Dr William Steward
University of Leicester
Nurse contact; Liz Andrzjchewski
0116 258 5998
Stage 3 trial

Re: XL119

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

5 (edited by ukmember Sat, 28 Jan 2006 05:44:01)

Re: XL119

My husband is living a more or less normal life except that he is not going into work. he is in contact with work by phone and email, talks to friends, puts his affairs in order, yesterday he went to lunch with a friend and then to Costco. Yesterday evening we had dinner with friends and he was just as normal. Only problem is that he can't sit still for too long as he has no flesh on his bum and quickly gets uncomfortable.

My husband is almost the opposite to your father, in that he seems to want to pretend that because so many things are 'normal',  nothing is happening. This morning he made a comment that he wasn't gaining any weight despite the fact that he is eating very well. That clearly worried him. Last night our friends told us a the son of one of their friends is evaluating all the research on chemotherapy and cancer. Surpringly despite all the trials it appears that the data has not been systemmatically evaluated. They mentioned my husband's case to him and he said - PDT is proven to be effective and (more important given the tendency for my husband to bury his head in the sand)  he also said, Don't hang around waiting for the NHS to get its act together, move as quick as you can'. This seems to have penetrated my husband's consciousness and we have now decided that feeling well is not the same as being well, and we have to act. We are seeing the oncologist on Wednesday and will make a decision about chemo.

WE are now looking to get PDT in France. We have a good friend there who has been treated for bowel cancer . WE have sent his oncologist our info and are waiting for a reply. There are several centres in France that perform this treatment.


WE have the video from the Bristol Cancer Centre and this morning we are going to watch it to see if we want to go there for a few days and deal with this illness in a body/mind context. My husband is a very spirtitual man. He is totally convinced that the disease arose because of his psychological and mental situation. he thinks he made himself ill and he believes he can make himself better.   

I work from home but I have other people who work with me so I try to keep a separation between work home. We are moving into other offices soon because it is not really suitable, should my husband become more ill to be at home.  We are lucky in the support we have; I have three grown up children who are very supportive. Luckily all of them are now close to home, my daughter moved from Bristol back to London once her father became ill. We have good friends who have cooked for us, people visit during the day and my husband is in touch with many friends throughout the world - thanks to the wonder of SKYPE.

Are you an only child Jules? Your father is lucky to have you work so hard of his behalf and I am sure it makes him feel loved and valued - which is an important element in healing. last week I read the comment of a well kown oncologist asked what distinguishes those who survive cancer from the rest. She said --in a word Love. The people who do well are surrounded by others who care for them and show it. I know you are looking desperately for a medical solution but in a way even if there is no guaranteed medical solution, the efforts you are making on his behalf and the time you spend together are what counts.

Good luck to you and you family,
Patricia

Re: XL119

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

Re: XL119

I was in the XL119 phase 3 clinical study and dropped out because I was assigned to the control group rather than the XL119.
However, I just learned that the study is being changed to open status, and that all participants will get XL119.
This sounds like very good news.
Woody

Re: XL119

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

Re: XL119

The trial you are talking about is a phase III trial worldwide.  The results won't be available for a few years.  My wife was on a phase I trial of XL119 and oxaliplatin.  That combo gave her about five months of no symptoms.  The only side effects were tingling in the hands and feet.  Good luck, Jules.

Re: XL119

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!

Re: XL119

I heard that the trials for this drug were terminated for an unknown reason. I spoke with a Center in Iowa that was doing the trials and they said they were just told to stop.

Re: XL119

http://www.fiercebiotech.com/story/exel … m=internal

Shares of Exelixis took a hit after the biotech reported that Helsinn Healthcare had shelved a late-stage trial for the anti-cancer therapy becatecarin (XL119). Helsinn had licensed the therapy from Exelixis, which in turn, had licensed it from Bristol-Myers Squibb. Helsinn halted enrollment after concluding that the therapy was proving less effective than chemotherapy. The drug was aimed at tumors of the biliary tract.