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

Hi all - Thanks Patrick for the response. Sound like you are going OK, great to hear that you have hired a rowing maching - good on you! Dad does find that the tenderness in his tummy stops him from doing a lot of things, and does lie on the sofa a lot. Also thank you for the your comment about Dad getting the best treatment, appreciate someone else's opinion.   Mandy - it sounds like Terry is doing very well, great to hear... keep us all updated with his progress sound like he is doing just fine!  Annfran - lovely to hear from you also, good luck for the 14th!  Yes scans are scary... but don't forget can hold some promising news - and it does sound like things are doing pretty good!  My Dad went in for his 2nd cycle of chemo (Folfiri) on Mon only to find out that his white blood count hasn't come up enough... another blow unfortunately.  We still don't know what this new pain was, so no answers there.  Dad is still on the morphine that the GP said to take, but Dad thinks he doesn't really need it.  So he is going to find out if he can stop taking it.  Dad and Mum are away down South for a couple of days since they have a break off chemo which is great for the both of them to take their minds off things.  I'm praying that his white blood count comes back up so that we are all go for chemo again next week!!

Great hearing news from you all XOX

Jules,

I had very bad pains between my belly button and the base of my ribs. I ended up in tears for days until I complained a great deal. They put me on Co-codamol (a codeine based opiate) which fixed the problem - dunno how but it did. Anyhow the point of my story is that they gave me sufficient Co-codamol to last me a month! After three days of taking the Co-codamol I decided that I would see whether I could do without it - it turned out that I could.

I told the MacMillan chemo nurse and she was displeased with me and told me that I should be taking at least a lower level of Co-codamol all the time. I ignored her as I hate taking pills just for the sake of it. The point is that where pain killers are the subject matter only the patient knows whether they are necessary. So trial and error is the only way. If your Dad stops them and it hurts then go back on a lower dose, if it still hurts then raise the level back to where the medics prescribed it in the first place. Only he can tell what is necessary and he should be encouraged to experiment himself. He will feel more in control if he does that and I am sure that's important for his mental well-being.

Hi everyone,

Hope things are ok.

Jules

Nev kept getting pains on his left side under his ribs and in his shoulder blade, he was told it was caused by swelling of the liver capsule.  I sometimes think you just have to accept that half the time Drs. just don't know.  He took Co-Dydramol for a few days and it went away. Also, re. 5fu, Nev is on that now and is tolerating it very well (its given through a pump over 46hrs), although his hair has begun to thin has no sickness or nausea.

Mandy

Re. Cetuximab, it seems the report that recently came out says it has no affect on early bowel cancer but works well with liver mets, it is now only recommended for advanced, metastatic bowel cancer.  Certainly in Nevs case he has been so much better since he started it, (apart from the acne type rash which drives him crazy and the splits to fingers and heels which are painful) . chemo regime has to change though, you have to have a picc inserted and have 5fu instead of cape tabs (this is NICE Protocol).  Anyway, scan tomorrow so next week we will know if its all been worth it!

Take care

Ann xx

Hi all!

Thanks Annfran.  That information was very useful as Dad is about at the same schedule as Nev. He also hasn't had ansickness or nausea, and Mum just shaved his hair off as it was falling out badly even after one treatment!  Mum felt terriable doing it, but hey it's only hair, and it will grow back!  Dad had his 2nd folfiri treatment on Mon, it was all go as his white blood count was back up - YEAH!  Mum and Dad saw Dad's uncologist and good a good report, which was great and just what we all needed!  He has put weight on again, his CEA is lowering (let's hope this treatment keeps on working!!!), the size of his liver is decreasing, and the X-Ray showed nothing!! So looks like the GP's thought on secondaries to the bone are wrong!  Thank GOD!  Well we are just stoked to have some positive news after things started to go backwards.  Dad is looking good, so in good frame to fight!  Love hearing from you all XXX        

Hi Jules,

Great news about your Dad,  have the pains in his side gone (the pains caused by "bone secondaries"!) Nevs hair has nearly all gone, but he is now the proud owner of a very dashing grey (he's 56) beard.  He gets terrible acne from the Cetuximab so he can't shave.  Speaking of MAB drugs, can you have them in NZ?  It has really helped Nev (well, I hope it has), he has certainly been so much better over the last few months than he was this time last year, sleeping all the time and hardly able to walk more than a few steps.  He had his first scan since chemo began on Tuesday, next Wednesday we get the results......

Hope things keep going well for your Dad.

Hope everyone else is doing ok

Take care

Ann x

Ann,

I am currently considering whether to accept Cetuximab as part of my treatement. The latest findings in the USA are that it is not effective and yet my consultant says it has been highly effective with many of her patients. Your comments certainly add weight to her claim - so thanks for your comments. Do please update us when you have the results from the latest CT scan next week. Meantime good luck.

Patrick

Hi Folks

My fiance 34 years old has duodenal (small bowel cancer). We leave in UK and his oncologist decided to test him against Cetuximab. But she also said that even if the test is positive and he could be treated with it the local authority (Edinburgh) will rather not pay for it. But we can try to complain.

Does anybody know any ways to get even some funding for the treatment if it gives any chance to have good results? Also do you know the cost if we decide to pay ourselves? Please advise and help if you can. The problem is that there is no treatment approved for small bowel cancer but I know couple people who had good outcomes from biological drugs.

Magda

Hi Magda & Patrick,

Magda,

I can't really help with the Cetuximab question re. your partner.  It has only recently been licenced by NICE for NHS use (does that include Scotland)?  It would also seem that it is only useful against metastatic bowel cancer, predominantly liver secondaries.  I'm afraid it is really quite expensive £10,000 plus I believe (I'm sure someone will correct me if I'm wrong).  If he has the right type of tumour  and your Health Authority refuse to pay I guess all you can do is appeal the decision.  

Patrick,

Again, Cetuximab appears to be of no use in early bowel cancer but results have been very good with liver mets.  Nev is the first person to be treated with it at our cancer unit so everyone is waiting for the outcome.  Will keep you posted.

Take care

Ann

Hi Magda, Patrick and Ann

Firstly, re funding - NICE guidelines state that the NHS should fund cetuximab in certain circumstances - look at NICE technology appraisal guidance 176. However, NICE doesn't apply to Scotland, they have their own version, called SIGN - website is http://www.sign.ac.uk/ .

Also the UK government has announced that there will be extra funding for cancer drugs from next April, but there will be interim funds available from October - the test for whether Cetuximab may be effective is the K-RAS wild type gene - if the gene is mutant, it seems that cetuximab is less likely to work

The cost for cetuximab is approx £955 for the first dose, and £680 for subsequent doses. My hubby starts his cetuximab tomorrow, and will have it every Friday, which will equate to £2315 per cycle. Apparently the total average cost for cetuximab for approx 8 months, which is how long patients had it for in the trials, was £22,796.

For example, Oxaliplatin is about £500 per cycle, and Irinotecan is about £830 per cycle, so you can see the difference!

Sorry if this is really technical, but I've been doing my research! Amazing what you can find out on the internet! Hope this helps.

Take care, Mandy

Hi we have some knowledge of cetuximab as bob has now had it twice, both for liver cancer secondaries. We initially had to apy for it as it was not NICE approved and this was two years ago. He didn't qualify for the trial as he had had chemo less than 6 months previously. However half way through the treatment the PCT decided to fund it, first time ever for Richmond and the second half of the 8 cycles (sixteen doses but each two represent a treatment) It cost  us approx £5 400. We didn't have to pay for some blood work as they used the tests from Charring Cross and apart fom the initial consultation the oncologist waved his fee as we were self funding. What a wonderful gesture.

Bob then had his liver op but unfortunately it came bck quickly and so this time he had irinotican and cetuximab, but by now it was NICE approved. He has had a second liver op which has shown clear margins, this was in June, and he goes fo his first follow up scan tomorrow and we both feel really unnerved.And sick!

Cetux is only for potentially operable liver secondaries. It certainly shrunk Bob's tumour first time, second time with irinotican it was less successful but the histology on the liver tumour showed a good amount of necrosis of the tumour, so something was working! However the tumour was still operable. we have tried to remain postive, he has continued to work all the way through, we really really would like a breather and a clear scan, but know that deserving isn't the same as getting.

Resectable liver tumours offer a potential cure, but potential is the word. If you want any other information do ask. Think of us tomorrow!!! 

Good luck to everyone

Judy