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

Hi Ann,

Really sorry that you and Nev are having it so rough. The intense decision making process sends me to the edge.

Firstly the Liver. My mum seems to use two different MRI machines. One apparently gives images that are obvious to the untrained eye the other a series of blur. My husband has just advised me my mum might need another scan. I don't think my nerves could hold out.

Secondly , I take it that they would plan to do both bladder and bowel in the one op? I know you will be busy ensuring you have a good urologist on board. I know it is not as common but I have heard it reported that the bladder can be well resected.

Ann I can see just how intense this is for you both and I am so so sorry you are having to go through it. I am still holding out for all the surgery for Nev. He is pushing on and you have sought out all the right people and I truely believe getting the right surgeon is half the battle as some seem more specialised than others.

Holding on tight with you and glad that the prof is taking charge of the scans.

Love Court

Hi all,

Mandy what woderful news and I am delighted your husband is not only making a good recovery but sounds fitter than most. Long may this continue for you both. Enjoy.

Jules, my friend the photos are selected!!! When I return from my holiday they shall be hitting the web. They are from last years holiday , enjoying each others company despite cancer. My mum picked her own photos as they mean a lot to her. All will be revealed.!!

Love Court

Hi everyone,

Mum had a chat with her consultant on Monday about continuing her chemo, and both agreed she should carry on, which is what I hoped they would say. More tests yesterday have found a blood clot in Mum's lung which the doc thinks is responsible for the breathlessness, so that has cheered my Mum up as she had thought it was the lung mets getting worse. It's funny that having a blood clot can be good news but hey ho! Although she does now have to inject herself every night until the chemo finishes, but she's fine with that.

Jules, thanks for your concern, I am so pleased you still write on here,yes Mum has lost about 2 stone in weight as hardly eating anything, but we have arranged to see a dietician to get some high calorie drinks so hopefully they will help.

I bought Mum a lovely wig last week as her hair has thinned and gone whiter than white, she really suits it and it has boosted her confidence so much, she wishes she had one years ago!

Anyway, good luck to everyone waiting for news.

Gill x

Hi all,

Gill glad your mum's treatment plan is working out. Always seems to be bumps on the chemo road.  My mum has lost three stones in weight but has regained one and looks to me as though she is enjoying food again.

Ann, thinking of you lots this week and hope slow though it might be your all heading in the right direction.

Wee update. Had consultation with liver specalist. Very informative and caring. He went through the risks and benefits of both chemo and surgery and concluded that if all tests come back ok then she will go on the urgent list for surgery. However he thoroughly went through the informed consent and that was very difficult to hear despite being necessary . In addition she may be left with only 27 % of her liver and I got to see the proposed surgery on the screen.

I was left feeling glad that there are surgeons around like him but totally sick at the thought of it.

My big boy headed off to high school today. So weeping mother on top of everything else. Think I am just going to hide!!!

Wishing you all well ,

Love Court

Hi All.

Just a little catch up as I have not posted on here for a few weeks.  

Court - Any news from the liver specalist.  I hope you get the news that you want.  I have heard that they can take up to 75% of the liver away but I am not sure how quick it grows back.   Hope your son got off to school ok.  How old is he?  My boys went through the lower, middle and upper school system so I get confused with what age children change schools?

Ann - How are you and Nev. You are always close to my thoughts. Have you got a date for the scan that the liver surgeon wanted done? who is the liver surgeon? The waiting must be doing you in especially when you must have thought a few weeks ago you would have some answers and a clearer picture of what was going to happen in the next 6 months.  Take care and sending you well wishes.

Jules - How are you doing and hows your mum.  Are you getting up to see her much? I know how a small family can take up so much of your time?  This year will be hard with all the first milestones.  I am not saying it gets beater the second year but a little easier maybe.  

Gill - I hope your mum is ok and enjoying the wig.  It is amazing how good they look now and how much confidence they can give you.  Fortunately Alex has not lost any of his hair or has it changed colour.  I think his family has strong hair as his dad was 87 when he died and had a head full of strong hair, his mum is 91 and look amazing.

Well tonight we go to see the oncologist.  Alex had his scan on Monday and we go to get the results so fingers crossed.  This is the first scan since 2nd line chemo started so not sure what to expect.  He has had such a bad lower back since March time and is still having stomach cramps that I am going in expecting to hear good and bad news.  We emailed him a copy of Mandys post regarding Terry and his liver op so hopefully he will have an opinion on that and explain his thoughts on that.

Providing all ok I am going away on 22nd June to Spain with my girlfriends for 4 nights so it will be good to let my hair down and just do nothing for 4 days. Then I have my brother over from Australia for 3 weeks so hopefully some good times ahead.

Love you all and thinking of you

Jacqui

Hi Jacqui,

Thanks for asking after my mum. Really nice of you. Hope Alex got on ok at his  appointment.  The chemo always gives my mum abdominal pain to the point she can be rolling round the bed. Her post chemo ct scan showed inflammation in her colon. Have they sorted his pain medication?.

I was reading yesterday about a new trail that has shown really positive results in American and is now going to be Liscensed. Will pop back on with the name.

My big boy is 11 , so will be one of the younger ones. However he has loved his visits and looking forward to all that it has to offer.

I am so happy you are getting away for a complete break. It sounds just fab. Enjoy every min of it . I honestly think you do so well with your kids and husband that this will be lovely just to have time to rest and not to have to think!

Mum heads off next week. Think I have an element of doubt as the oncologist was happy to keep with chemo. However the surgeon feels that it is a reasonable plan. Will be glad to get her through it and back home.

Sending love to all,

Court

Hi everyone.

Well I am sorry to say but not good news.

We say the oncologist yesterday evening and the 2nd line chemo of cetuximab and Folfuri has not worked. There was a marked increase in the size of the tumours and the cancer has now spread to bones in the lower back and glands up in the chest and throat.  Not the news we were expecting and just feel blown apart.....

The oncologist is going to keep him on the 5FU and put him back on the oxciliplatin from next week.  He will have 3 lots of this before we go on holiday.  A scan before we go away and then if its working Al will fly back for treatment but if it is not working we will meet up with the oncologist in September to discuss options.  He mention that the only option left is the old cancer drugs that were used before these better ones came along so I feel as though we are clutching at straws and he did not hold out much hope for the chemo to work.  Al is going to have some radio therapy on his back to try to ease the pain.

We are just sitting here quite speechless and numb.  Its his 53rd birthday tomorrow, what a present! 

Hope you all have better news.

Jacqui

Jacqui, I am totally gutted for you both. I had hoped it was the chemo causing the pain.

If I remember right Alex did well on oxaliplatin. I hope it does its good work again. I do truely believe its the most powerful.

I was actually just coming on to add the drug details.It is presently available (from what I can gather) as a phase III trail in the uk called Zaltrap. It is for previously treated metastatic colorectal cancer, designed to block compounds that help tumours grow new blood vessels.

Generic name. Aflibercept Trade name. Zaltrap It is a second line agent and going to the european medicines agency. The results are promising.

Jacqui, I am here for you and truely hope the oxaliplatin starts pulling it back in.

Hope also the radiotherapy  helps deal with the pain too.

Really sorry you are both having to go through so much,

Love to all your family,

Court

Oh Jacqui, I too feel just gutted for you as well. I bet your head is just spinning. I am pleased to hear that there is a treatment plan in place, and also pain control for Al's back. You know, these old drugs can still work on certain people, and also the way everyone reacts to all the treatments is so different. As ripped apart as you are, try to refocus, and look at this as another bump in the road to 'jump' over... And most importantly, have a wonderful Birthday for Al, you both deserve a wonderful day. My love and prayers to you both, with love and hugs - Jules ...   I will catch up on you others soon.  I have my lovely mum here and are off shopping!

“The Best”

God saw you getting tired
and a cure was not to be.
So He put His arms around you
and He whispered “Come to Me”
With tearful eyes we watched you.
We watched you fade away.
Although we loved you dearly,
We could not make you stay.
A golden heart stopped beating,
Hard-working hands at rest.
God broke our hearts to prove to us,
He chose to take the best.
It’s lonesome here without you
we miss you more each day.
Life doesn’t seem the same
since you have gone away.
When days are sad and lonely
and everything goes wrong,
we seem to hear you whisper
“Cheer Up and Carry On”
Each time we see your picture
you seem to smile and say,
“Don’t cry, I’m in God’s hands,
we’ll meet again someday!”

I Found this and thought it is so true for my Dad, and it warmed me from the inside.   It would have been My Mum and Dad's 43rd Wedding Anniversary today XOX.