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

Hi Patrick

Have you been offered cetuximab? Yesterday Terry was told he could have cetuximab. He wondered why I was pleased as it meant extra treatment, and possibly extra side effects, but my thoughts were that he would be having another treatment added on to kill the nasties, and that that had to give a better chance of killing all the nasties than not having the extra treatment. Anything at all that gives a better chance has to be a good thing. He's only 53.

I've also heard good things about cetuximab, but you have to make the decision that is right for you. I wish you well, let us know what you decide.

BW Mandy

Hi Mandy & Judy,

Mandy

Good luck to `Terry with the cetuximab, I'm sure it has helped Nev, an awful lot of his previous symptoms have gone.  Arm yourself with something for the rash and (the thing Nev finds worse) the splits on the fingers and heels, they get very sore, I, like you, was a nurse so I'm plying my former trade on a daily basis!

Judy

Will be right there with you tomorrow, the results of Nevs first scan since chemo started are due on Wednesday, I really need to know but I don't want to if that makes any kind of sense.  My greatest hope is that, like Bob, his tumours will now be operable, he hasn't had any surgery yet, even the bowel primary was inoperable.  I hate this not knowing what next, currently he has finished both chemo and cetuximab and I have no idea how they intend to proceed.

Good luck everyone

Take care

Ann

Hi Ann, Bob's liver scan was clear! Can't quite believe it, we don't have the results of the rest of the body yet, but the ct scan and micro bubble ultrasound on the liver were both clear. After 3 years it's the first time we haven't had an inconclusive result!! The radiologist actually said the scan was clear so I'm hoping against hope he looked at the whole body, but mustn't raise hopes too high!

Will be thinking of you on Wed. Bob's onco said these fast growing tumours often respond well. You still have the second line chemo, apparently irinotican and avastin  is very effective so keep that in mind won't you.

Aveno cream is very good for the split fingers and cream and the antibiotics are helpful for the rash. They say the greater the rash the better the effect! Double edged sword. 

Someone I know had an inoperable bowel cancer, but after tumour shrinkage with chemo she had the op successfully so you never know how things will turn out. The fact that Nev feels so much better must count for so much.

have a good weekend everyone

Judy

Judy,

Thats really great news, fingers crossed for the whole body.  Yes, I'm hanging on to the hope that as Nev is so much better something must have happened, after all chemo and cetuximab are the only treatments he has had so it can't be down to anything else!  I will be on their case over the "what next", will they give avastin on the NHS?  Thanks for the advice re. spots and splits (sounds like kids tv characters).  I'm sure you and Bob will have a good weekend after your news, hope everyone else is ok.

Take care

Ann x

Judy,

Avastin is not actually approved by NICE. It has highly significant possible side effects - like possible gastro-intestinal perforation which can lead to death if not diagnosed very quickly - 48 hours max. Anyhow unless things have changed in the last month, it's not on the NHS menu.

Patrick

Hi Annfran and all!  No I don't know a lot about cetuximab at all - thanks all for your posts on it very informative!  I have tried looking on the internet and don't think it is funded here in NZ, unfortunately - but I will ask the oncologist next visit.   Dad is doing pretty well, has still had a few tummy pains, but nothing like what he has had before.  He said that he had his worst day yesterday, (Fri, after chemo Mon and Pump down on Wed), just extremely tired this time around and feeling pretty crappy.  He is feeling better today so hopefully will have a few better days ahead.  Annfran good luck for those scan results, it can be so nerving.  Sounds like Nev is doing great though, so should be some positive news, and lots of thanks for him feeling so much better also.  I will be thinking of you x.  To all out there, it's great to see so much good info on this forum, and lots of positive news!! XOX       

Patrick you are right it's not approved by NICE and does have some side effects, but one has to weigh up the pros and cons. You of course are very carefully monitored and have to be alert to problems, but Bob's onco said it is well tolerated in the main. It can be very effective when combined with irinotican and both Bob's onco and the liver surgeon at the Hammersmith want to have that as a backup in case the cancer returns. Most people don't get those side effects and in the States it is used as an ongoing medication on its own after chemo is finished. Oncologists can apply to the PCTs for funding and our onco said she has been successful a number of times. However you are right to point that out.

Ann thanks so much for your note. We do as I have said have to wait for the rest of the scan to be looked at, but the radiologist said the scan was clear and I'm hoping he may have had a peek at the rest of the scan. Good luck on Wednesday, so hope you get some better news. 

Jules just check that cetuximab isn't being liscenced under another name, is it erbitrux? Certainly it is used in Australia, as is SIRTS (selective internal radiation therapy)Hope you Dad continues to feel that bit better after the chemo wears off.

Love Judy

Judy,

Interestingly I am due to have my liver dealt with in the Hammersmith. Currently I'm under the care of St Mark's in Harrow.

I am not at all convinced by the 'carefully monitored' aspect that you mention. As far as I can make out, the whole chemo scheme works on the 'fire and forget' basis. I am constantly caught between the chemo nurses who tell me I need to see my own GP, and my own GP who tells me that I need to see the oncologist. The fact is that the NHS fails to cope properly in that loop. There are too few oncologist consultants looking after far too many people. I should be able to call my oncologist consultant and get an appointment - however they don't let me - I have to go through the loop - which is hardly being monitored carefully. It's self-monitoring and little more than that.

I'm in constant abdominal pain, hate the taste of everything - so find it hard to eat, feel generally awful all the time, sleep very badly and only in 2 hour slots, have diarrhoea every few days, feel the cold chronically - even on a warm day, have lost weight - I'm now 66.8kg & 5ft9in. In general I am finding the whole regimen appalling. I feel as if I'm dying anyhow, but with a poor quality of life whilst I have one.

Perhaps things will improve, I only hope so. Then to have to decide about Cetuximab in addition to my Xelox regimen is certainly stressing me. The ASCO report on Cetuximab is that it's not effective. Not even if you express the K-RAS wild type gene. In fact in older patients 70+ (I'm 65) the outcome is worse with Cetuximab. This has been my reference on Cetuximab: http://www.medscape.com/viewarticle/723309

Patrick

ps. Anyone can sign up to Medscape

Who is going to be your surgeon Patrick? Bob was under the care of Mr Jaio. Bob was at Charring Cross for chemo and if he ever needed anything he used his Mac nurse who would phone back usually that day with an answer, maybe you could try that. He has built up a good relationship with her and she seems able to get hold of Bob's onco very quickly. It was never suggested that he should contact the GP for anything as you will find you have far more knowledge of your regime and illness than they do.

The cetuximab reacted very well, the first time round without it the tumour remained the same size, once cetuximab was introduced withing 3 months it had shrunk 50%. Another patient Bob was friendly with on the trial had his tumour shrink from 10cms to 2cm and it then became operable. It costs a lot of money and so the figures from the trial should show it has some value. All I can say is that it worked for Bob, but it did mimc the side effects of the other chemo. Certainly the histology reprt on the liver tumour this time showed extensive necrosis (dead tissue)

Is there any possibilty of them reducing the treatment to reduce the side effects? Bob wasn't on the full percent and the bolus was left out so that he could tolerate it better. Bob found the irinotican harder to take and so they swapped him back to folfox and 5FU. Keep reiterating how poorly you feel, and St. Marks must have a chemo/ macmillan nurse who can help you, they are a specialist bowel hospital afterall. I can't understand it, Bob has always been able to phone and make an appointment when needed, although it has to be on the dyas she is there obviously. Is St Marks just particularly over subscribed?

Hope you can get some sort of relief from such awful discomfort.

Judy

Judy,

Please excuse me for not replying today, but I am feeling really ill at the moment - with extreme diarrhoea and severe abdominal pains. I'l try to return here tomorrow if I feel a little better.

Patrick