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

Dad's appointment today went pretty good actually - a lot better I think than what we thought it might. The scan showed a third reduction in the size of the tumors in his liver - still extensive but heaps better! The down side is there is a wee new tumor that isn't responding to the treatment. Dad is booked in for chemo on Monday and we will hit these tumors that are responding to the chemo and they want to keep a close on things via scans. So we were really happy. Would have been great to hear they were all being blasted by the chemo but like the oncologist said the good does out way the bad. And so many people don't get any response to chemo at all. There was a brother to a guy that Dad knows who was in the chemo ward the day Dad started chemo getting his treatment (For the same cancer as Dad) and he died a few days ago at the age of 54, so we were all feeling pretty down about things. But we are all feeling a lot better. He also gave Dad some new 'Pills' to help in the reduction of the fluid in his feet and ankles, so that will made a huge difference too.    I also asked about Cetuximab, and no it is not funded here in New Zealand.  Our Onc has worked in the UK where it was funded and said that if it was funded then he would offer it to Dad.  If we were looking at funding it ourselves then it would cost around 40K - 60K for the treatment.  Dad is saying no at this stage, but I think he needs time to digest all the info.  I told him I don't want his money, and would far more see my Dad around a lot longer!  Of course no guarantees so food for thought I guess. 

Well all, things are all go for more chemo next week and I am hoping that  we are on top of controlling Dad's side effects.  Hope you all are doing OK out there!

Love to all ! - Jules  

Hi Jules, Well your news today really cheered me up. Chemo can do good things and well done your dad for all that he has gone through. Glad he can get back on track with the chemo to sort  out all the mets.

Your poor mum must be so glad and hope the meds sort out the old ankles.

I was feeling the strain today but am much encouraged now. This is great for you all , nice timing before Christmas too.

Strength and happiness to you all

Court

Hi Court, thank you for your words and pleased it cheered you up also.  Sorry you have had a bad day.  You are right it really is a strain, and so hard seeing our parents - The strong ones - having to go through this CRAP.  Really does take it toll.  I know you have been suffering from a cold, so I hope that that is getting better too, as very hard looking after our own children and of course the constant cancer on our mind when we need to get better ourselves as well.  I hope that your Mum's building is coming along and that is all going to plan and hopefully keeping your Mum occuppied too.  Well i'm off to get organised for my middle gorgeous daughters 7th BD.  A great something to make us all smile and forget about for... well for a little while anyway!  Love to you and your Mum!  Jules xxx          

Hi all

Haven't posted for a while but have been reading all your posts. You all seem to have such strength.

Magda - I really feel for you and Gregory, hope his situation is improving. Ian - hang on in there, it kind of gets to be a routine that you just have to cope with. Jules, things sound more hopeful for your dad. An, remember, parents feel they have to be strong, to help their 'children' cope. Ann, I don't know how Nev is managing to work, I can barely work and it's my husband that is having Chemo!

We've had some good news - Terry's first scans since diagnosis and his first 4 cycles of Oxaliplatin/Capecitabine with Cetux have showed really good results - he apparently had 8 lesions in his liver, all over an inch, some of them can hardly be seen now! SO he's been referred for liver surgery in Basingstoke, which apparently is one of the best places. He's having a 'final' cycle of chemo while they sort it out.

I know it sounds crazy, but this has knocked me for six. I can hardly concentrate, worse than when he was first diagnosed. He coped really well with the chemo to begin with, but as they say, it cumulative, and now is very tired. Still, so long as it's working.

With best wishes to all of you, I read your posts and think of you often.

Mandy x

Hi everyone,

What great news Mandy, the best Christmas present!  When will Terry be having his surgery?  I know its scary, Liver surgery is not exactly a walk in the park is it, but it does give very real hope for the long term.

Jules,

good news from you too.  Is your Dad continuing with the same regime?  

Court,

How is your Mum and your cold?

Sue,

How are you doing, did you get your chemo?

We are supposed to be in Wales now but weather has made it impossible.  We had great difficulty getting to the hospital for chemo on Thursday but we made t in the end.  Scan set for Christmas week, results 5th Jan.

Take care all

Love Ann xx

Hi all

Thank you for all replies and I am sorry for not replying. I am having really bad time. Gregory is still in hospice. The pain seems to be under better control but vomiting not yet. He still cannot eat too much. He is scheduled for chemo on Wednesday but I just do not know how he will cope with it... I will update you with more details when I gain more strength, I feel really down seeing "my love" in such a bad condition... I know I have to prepare myself for the worst...

Take care

Magda

Hi Magda, don't ever say sorry for not replying... you are there for Gregory and that is the most important. I have been thinking of you.  I think it is good that Gregory is still in the Hospice, though I can imagine it breaks your heart to see him there, I know for care that is the best place for him to be.  I hope that the vomiting can be controlled, and that he can find strength.  My love and prayers and well wishes goes to you and Gregory - keep fighting.  XOX Jules       

Hi all,

Magda,

As Jules says as difficult as it is to see Gregory so poorly he really is in the best place.  I hope they are looking after you too.  We are all thinking of you and hoping Gregory improves enough for chemo.

Take care

Ann xx

Magda,

This whole cancer thing is very hard to cope with in every way. None of know if we will survive and if we do, how long we've got. One of my greatest challenges is to come to terms with that. Equally it's something that my wife is also trying to come to terms with. She dislikes it when I'm in hospital for 3 days worth of chemo infusions so it worries me as to whether or how she would cope when I die. Note I say when as it's only a matter of timing not whether I will die as that is inevitable anyhow. I just hope I will have a few more years yet - but who knows - certainly not me.

Gregory is without doubt best in a hospice where they can cope with his pains. For your own sake you are by the sounds of it slowly coming to terms with the possible outcome. That is important for your own well being and I strongly advise you to accept some professional counselling as soon as possible. It will help you talk things through with someone who is not directly involved.

Patrick

Hi all!   Magda, how are things going with Gregory?  I hope that things are OK.  Thinking of you both.  Patrick, how are you going, I hope you don't mind me asking but I was wondering why you have to have stay in hospital for your infusion?  Is there a reason that you can't go home with a portable pump?  I was just wondering that's all.

Well I wanted to ask advice and or your experiences from all you knowledgable and well informed Cancer people and careers out there.  Well Dad did have a scan and the liver mets have shrink by a 1/3rd which is great news, but on the other side of things is that there is a new wee bit in his liver that has developed, which his Onc said won't respond to this chemo as it has developed when he is on it.  He is currently on 'Folfiri'. So the way I see it is that maybe Cetuximab might do the trick!?  In New Zealand it is not funded so if did did have this KRAS gene then we would have to fund it ourselves what would be around 40K - 60K.  I wanted to hear from all you amazing poeple out there from your experiences or your views on this.  Of course it is Dad's decision,  though I know Mum wants to fight this.  It's just the unknown I guess, what if it does nothing... but that's what I said to Dad - hey what if it does!!  Just sucks that it's not funded, then it would be a no brainer.  I keep telling Dad that it is funded elsewhere, so that tells you it is worth a shot.  I just don't want him to decide too late.  Looking forward to hearing from anyone who has something to add on this.  Thanks XOX