My Dad 66yr old with bowel cancer stage 4 with liver mets

Jules,

Every other week I spend 3 days in hospital for Cetuximab + Oxaliplatin + 5FU - in that order. The Cetuximab takes about an hour and is a smallish drip bag. The Oxaliplatin is about 1 litre and takes about 6.5 hours (150ml/hr max) followed by 2 litres of 5FU at 52ml/hr (about 22hrs per bag). On that basis they infuse over 3 litres with saline or glucose flushes between each different chemo. So the process is quite involved and requires the intervention of nurses pretty regularly. The Oxaliplatin is the nastiest as it usually hurts which is why I now specify no more than 150ml/hr. The doctors last time accepted that without debate.

At £1000 per bag of chemo it's all pretty expensive - but at least I know where all my taxes are going - back into me!

Cetuximabis as you know carries no assurance that it will work. I do hope it works for me but only time will tell. CT scan this Thursday - initial result next week.

BTW - in the intervening weeks I'm given just Cetuximab - as tomorrow.

Patrick

Hi Jules

Don't know whether this will help or not... Terry is having Oxaliplatin and Capecitabine, and has had Cetuximab added in from cycle 2. He is just about to complete cycle 5 (one more dose of cetuximab this coming Friday). He was diagnosed in July, with rectal cancer with 'multiple' lesions on his liver. He has just had his 1st scan (after cycle 4 - so 3 cycles of cetuximab) and  his onc phoned us to say that the liver mets had shrunk, some were now hardly visible. I had originally glimpsed a report which said they were all about 1-1.5 inches.

Yes, we think cetuximab is worth trying. Especially if your Dad has the wild type gene, rather than the mutation. However there have been some articles (in the medical press) lately, that some people, with certain types of mutant gene, have been shown to have a good response to cetuximab.

Terry is 53 yrs young. We are struggling financially with him not working, but I think we would have (tried to, in the current economic climate!!) re-mortgaged the house if we had needed to fund it and it wasn't available on the NHS. Provided of course, that the onc thought it had a decent chance of working for him! The girls (22 and 26) would, I'm sure, have rather had their dad around/given every chance, than to have an 'inheritance'.

Terry is now waiting to hear about when his liver resection will happen. It will be the first time he has been in hospital, except for the one night a month or so ago when we went out for a meal and we foolishly had prawns! That will teach us to read the blurb they give you about being on chemo!

In the end it will as you say, be your dad's decision, which no doubt he will make with your mum.  Are there any trials going on for it???

Hope this has helped in some small way.

Thinking of you all....

Best wishes Mandy

Mandy, thank you so much for that useful information.   And what fabulous news for you and Terry, I just love to hear these good news stories!!  All the best of luck with it all.  I think the biggest thing for Dad, is that cetuximab isn't funded here, so therefore I think he sees it as not worth a shot, as may only give you a few extra months...  I think it is worth it, even if it has little affect, at least we know we did all that we can.  Yes like your girls, I would much rather have my Dad around a lot longer than any money.   Well I guess time will tell.  I printed out all the info on cetuximab for Dad and Mum (as they aren't internet users), so I will see what happens.                 Jules

 Hi All Hope everyone experiencing bad weather is managing ok.

Jules interesting topic. We do not get funding for it either and I feel like you but have not talked about it with my mum. She will only deal with what she is presently going through. But I would like to think that all options have been explored.

All is well here. I had a six hour journey just to hand in some blood to the hospital . Snow has ground us to a halt. The old potassium is slipping so doubled the dose and holding just below normal.

Magda hope you are still able to travel.

Mandy, great news and I do know what you mean. Its the best news ever but somehow it as though you allow your emotions to catch up. Dont worry the joy descends. I think we were almost inappropriately happy dropping her into the ward, grandchildren the lot." Here she is, sharpen your knifes. "  The next time I saw her she was in ICU. Back down with a bump. 

Sending love to Nev and Patrick too. Think if I remember correctly you have scans this month.

Love to all

Court

Court,

I've just returned from having had a staging CT scan. Of course when I got to the hospital there was a major power cut that meant either transferring to another hospital or sitting it out. I sat it out and was rewarded with being dealt with as the first outpatient. Mind you a few people made a song and dance over the power cut and blamed the hospital for not having generating capacity to cope with the whole hospital - ridiculous of course as it's a huge place and would need a small power station of its own.

I've now got to wait until next week for the initial results. I'm keeping my fingers crossed.

Patrick

Hi

I am not bad with driving through the snow J I am Polish so we used to it. J Gregory is still in the hospice but finally he seems to be better with the pain control and vomiting. He has also started eating better about for about 2 days. He had a blood transfusion yesterday and had a line put for the chemo. He decided to postpone chemo and get more strength as he was not able to do it so far because of all these symptoms. He will get it probably on 20^th or 22^nd. NHS refused to pay for Cetuximab as we expected. So I will be appealing as the oncologist suggested and then if the appeal if rejected I will be negotiating with the hospital to pay only for the drug not for the service. This was advised by the oncologist too. When Gregory feels better I feel stronger too.

Patrick I will keep fingers crossed for you results.

I am sending warm hugs to all of you…

Magda

Magda,

Many thanks for your good wishes for the results of my CT scan which I had today.

Interestingly I am having Cetuximab but I'm not sure how it's being paid for. I think it's one of those trials which if it works then it's paid for by the NHS otherwise not.  I do hope it works - I've now only got days before I find out what it's doing.

I do hope they manage to stabilise Gregory and get him onto some chemo. I'll keep my fingers crossed for you both.

Patrick

Hi all!!  Well what a cold snap you are having there!  I hope you are all keeping warm... mmm we might have a BBQ here for tea tongiht...  he he he    Don't worry all, you can pay me back in our winter!  Patrick, good luck with your scan results. I don't know about you and your wife, but I find that waiting on scans absolutely frightening!  But as my Dad says, what will be will be.  I sounds like you are doing pretty well, with chemo symptoms on this regime - that alone must make you feel a little more human again.  Court - yes such a bummer about Cetuximab not being funded, seems so unfair depending on where you live you can get it funded (Magda, you too are feeling this same thing!).  Dad always hs problems with his postassium levels too, can make him very wobbly and confused if they get too low.  At least we know now and they keep a good eye on it.   Magda - great to hear from you.  Magda - great to hear from you.  Sounds like Gregory is getting stronger and good news that he may be able to have chemo soon.  Good luck and wish him stength.  And as I mentioned there, so unfair about Cetuximab - it really does bloody annoy me that it's not funded to all.  Laurpat - We haevn't heard from you here for a while, I hope you are doing OK. Well all love to everyone, and keep warm!!  ......  = ) Jules  

Jules,

Of course I want to know the results of my CT scan but I take the view that it will be whatever it is. If it's disappointing then I've got to hope that I can be put on another lot of chemo that will work. Perhaps a lower dose of XELOX - assuming I can tolerate it. It would be a very high risk strategy as it put me hospital last time but I know it began to shrink the mets in my liver. I do hope I don't have to go down that route but if needs must be...

Patrick

Hi All

I have at long last managed to write something down on the tread.  I read each one when it comes through on email but never seem to get onto the site to reply.

Everyone seems to be "getting on with it" at the moment except poor Gregory, I really hope that he will get to have the chemo soon as he does appear to be getting really good care at the hospice and getting stronger. Thinking of you Magda and Gregory.

We have a scan coming up on the 5th January and if it shows a good result then Alex will be given a 3 month break to allow his body to recover from the chemo.  I started up a new tread as well as Alex seems to be a different person on this round of treatment compared to the last and I fear that it might mean the treatment is not working this time.  Apart from the one treatment when he was sick all the way home (even the docs think he caught a bug as son was sick the next day) he has had hardly any side effects from the chemo.  He does struggle to get out of bed in the morning but he is usually up at 8.00.  He used to not be able to get up until 10 and then went to bed at 9.00pm.  He used to be washed out after day 4 of the treatment and now he seems pumped full of adrenaline and is bouncing off the walls. They did up the anti sickness but cannot believe it could have this much difference.  Hopefully everything will be ok.

I think I have done nearly all the christmas shopping as I only have one more week and then the boys finish school.

Anyway, keep well eveyone and hopefully we will all get the news we want with the scans coming up.

Jacqui