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

Hi jules,

You know we are here anytime, it is so important to be understood. Kids just love their grandparents, it is such a sad time for them too. All I can do is send my love to your mum and dad and hope the fishing trip has some special moments for you all.

Lots of love Court

Ann, I am sorry you have had sad news about your mum. I hope you have some support too , Nev must be very pleased with his results. Hope the surgeons get to work.

Hope everyone else is doing ok

Love Court

Hi

My husband is 33 and has jsut been diagnosed with Rectal canc with mets on the liver and lung, he has not been given the otion of surgery, does anyone know if this is normal? He is on round two of chemo and has been lucky enough to have been put on avastin too.

Does anyone know of any other treatments that could be an option?

We are not prepared to jst take this lying down and will explore any options

Thank you  

Hi Nancy,

Sorry you find the need to be here.  My husband has bowel with extensive liver mets and, due to the mets being inoperable, he has not had any surgery.  He has just finished a cycle of chemo with cetuximab and his latest scan shows more tumour shrinkage and his tumour markers have plummeted from 27,000 to 1.  He has now been referred to a liver surgeon in the hope that the mets are operable, if not more chemo and the Onc. is going to apply for Avastin through the interim drugs fund.  He also mentioned SIRT(Selective Internal Radiation Therapy) as being a possibilty, (again he would have to fight for funding) and RFA (Radio Frequency Ablation).  Totally with you on not taking it lying down.  

Take care

Ann xx

Hi Ann

Thank you for your reply, it is good to talk to people that know what we are going through and I too am sorry that anyone needs to be here.

People keep mentioning cetuximab , can you tell me is this standard chemo for rectal cancer ?

I have been researching sirt and rfa and have mentioned it to the onc but he just keeps saying we will see! Very frustrating .

I wish you and your husband all the very best and do believe that a positive outlook is part of the battle .

You take care too

Nancy xx

Nancy,

I am receiving Cetuximab for my liver mets which are as a result of colon cancer. I've already had my ascending colon removed so the current chemo regimen Oxaliplatin + 5FU + Cetuximab is intended to shrink the liver mets before liver surgery.

Here is NICE's summary on Cetuximab:

What has NICE said?
Cetuximab given with other drugs called 5-fluorouracil, folinic acid
and oxaliplatin is recommended as a possible first treatment for
people with metastatic colorectal cancer only when:
• surgery to remove the cancer in the colon or rectum has been
carried out or is possible
• the metastases are only in the liver and cannot be removed
surgically before treatment
• the person is fit enough to have surgery to remove the cancer in
the colon or rectum and to have liver surgery if it becomes possible
to remove the metastases after cetuximab treatment
• the manufacturer refunds 16% of the amount of cetuximab used
on a per patient basis.
Cetuximab given with 5-fluorouracil, folinic acid and irinotecan is
recommended as a possible first treatment for people with metastatic
colorectal cancer only when:
• surgery to remove the cancer in the colon or rectum has been
carried out or is possible
• the metastases are only in the liver and cannot be removed
surgically before treatment
• the person is fit enough to have surgery to remove the cancer in
the colon or rectum and to have liver surgery if it becomes possible
to remove the metastases after cetuximab treatment
• the person cannot take oxaliplatin because of its side effects
or contraindications.
Treatment with cetuximab should stop after 16 weeks and the person
should be assessed to see if they can have surgery to remove the
metastases in their liver.
People with metastases only in the liver who receive cetuximab should
have their treatment managed only by multidisciplinary teams that
involve highly specialised liver surgical services.

Hope that helps

Patrick

Hi Nancy,

Yeah, that "we'll see" really gets you down doesn't it!  Cetuximab is a similar drug to Avastin (a Monoclonal Antibody), which is not a chemo drug.  The tumour has to be tested and be of a certain type for it to have any effect so not everyone can have it.   I don't know about Avastin but Cetuximab is now only used in metastatic bowel cancer,  as it has been found to have little effect  on early stage bowel.  Nev has had really good results with the chemo/MAB combo.  I hope it does the same for your husband.  By the way,  does Avastin, like Cetuximab, lead to  horrible acne type spots?

Ann xx

Hi Everyone and welcome Nancy, sorry you have had to join us but I hope you find friendship and advice in abundance here.  We are all in the same boat and here to help and support one another.

Jules - How is your dad. I hope you managed to get away to the fishing hideout that you wrote about.  It sounds a wonderful place and hopefully you will have many happy memories there.  I also felt so sorry for you when you said about telling your children about Grandad.  Last week I got so fed up with Alex and his foul temper and complete lack of humour I told my boys everything regarding their dads illness.  I explained that when first diagnosed he was told he had 2 years and because that time is coming up this year in May and that he is waiting for scan results (tomorrow) he is getting anxious and worried.  I explained that he wants to spend time with them and enjoy time with them. He wants to show them how to do things while he can. It was so hard that all 3 of us ended up in tears and it broke my heart but I think I did the right thing.  Alex takes it personally that they do not spend much time with us but they are 14 year old boys who are going through adolescence and want to play on x boxes or listen to music in their bedrooms.  I am finding it so difficult at the moment.  I want to climb in a snug hole and hide until it all disappears and goes away.

Magda - just wanted you to know that we are thinking of you and Gregory.  I think about this site so often and all the friends I have made here.

Ann - My hubby has been on Avastin for many months.  He started in June 09 and continued with it until March 10 then had a break until August and then started again in September 10 which he finished in December 10.  As far as we are concerned he had no side effects from it at all.  When he started the doc said that he could only have it for a certain amount of time due to the effects so not sure if his stomach problems are to do with this or not. If not then he has had not different side effects such as acne with the Avastin.

Nancy -  Hi.  Sorry for the ramble above.  Alex does not have the Cetuximab but after reading about it from Patrick I don't think he qualifiys because he is at stage 4, he has been told by liver surgeons that there is no chance of operating on this liver and that a tumour has now been found on the artery outside the liver which means that he can now only have chemo to give a quality of life.  There are other options such as Cyberknife and SIRT.  Unfortunately they are not suitable for Alex.  I think your oncologist will not say yet whether these are suitable for your husband as they need to see if the tumours can be shrunk with chemo first.  Alex cannot have the tumour in the bowel remeoved as that will make him unable to have the necessary chemo for the liver tumours and as the bowel cancer will not kill him then they say it is not a risk.  It is the tumours of the liver which are the problem.  Hopefully your hubby will respond to treatment, the tumours will shrink and other treatment can take place.  I wish you and your hubby well.  I am sure you will be back here with more questions and I hope we will be able to help you.

We are back at the hospital tomorrow for scan results and then we can plan our next few months hopefully.

Take care everyone

Jacqui

Hello to all!  Welcome Nancy, it's always sad to see someone so young affected by this disease.  It sounds like you have the right attitude and your Onc has the best drugs for you.  Stay positive, and like you say don't take it lying down!

Patrick, thank you for your advice in regard to Dad, it's great to have someone in the same age bracket to say how they are feeling.

Ann, those cancer markers are amazing!  Well done Nev, I am so excited for you both.  Dad's Onc did say that it's not the marker itself that they watch, as everyone does vary alot due to genetic make up, it's more the percentage drop that they are interested in... and look at you on both counts!!!  FAB!

Jash, yes we did get away to our family fishing spot.  It meant so much to Dad, as it's the place where myself and my Brother spent so much of our childhood.  It seriously is his favourite place in the world.  He is still doing very well at present, yes his tummy is tender from the enlarged liver, and his feet aren't doing what he would like, but seriously he is doing better than what he was back in October.  I also don't see any more weight loss since Christmas.  It was great to be there with him and Mum when he is still feeling OK.  And yes Patrick, like you said we didn't leave anything unsaid, I must say though that I am a very open person and always have told him how much he means to me, so that part was easy,  He is still feeling good in himslef so that helps also.  I still find it hard to believe...   Our kids were great, I was so scared that they might come out with some things, but no they didn't.  We seriously just had a great old time like we always do and just briefed on the old cance business and carried on having fun.  The one thing Dad did want to know was that we would keep coming to our fishing spot with Mum in the future - which of course we said for sure too.  Jash I think you did the right thing telling your boys, though can imagine how hard it was.  It's such a hard time being a parent of teenagers the best of time, let alone trying to deal with cancer among it also.  I think they needed to know as then it lets them know why you and Alex have such a short fuse, and hopefully help you along the way.  How are things going now that they know?  Have you told Alex?  Just remember that they are teenagers and it's such a confusing time for them just dealing with that, I hope they can show you  and Alex the support that you both need, if they don't... just remember they are your boys and love you.  I guess you will have your scan results now?  I hope that you get some good news to move forward with, Thinking of you.  Court how is it all going with you and your Mum?  I hope well.  Magda, has Gregory had his wish of more Chemo - thinking of you both XOX  

Love to all my Friends XOX Jules

Sorry, it's late here and I am having problems with this site!! Just typed out an Half how reply to all... and it's lost.  Everything is good here, I will post tomorrow as i now need to go bed!  Jash, hoping for good scan results for you an Alex XOX  Jules

Oh sorry about that... it did end up getting posted after all... Yeah and good night!