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

Hi Jules - fingers crossed for your Dad that its just a blip

Does anyone know whats a bad CEA level ? - is eveyone the same ? I thought they said his was 49 which seems a lot lower but maybe I just got it wrong.

I hope the new chemo works for him & isn't as bad as your fearing

Try & keep cheerful - yep I know pot & kettle !

Kate

Hi lvinginhope

I haven't checked back for a few days & now I feel really sorry that I haven't answered you cos you sound so sad - I cant imagine what it must be like for you when the news seems to be always bad but fingers crossed that there's something good just round the corner

My hubby is on the same chemo ( Oxali & Cape).just coming to the end of his 2nd cycle - I'm trying to convince myself he seems better so it must be working but that might just be wishful thinking - I still struggle to believe the oulook is so bad for him - apart from being exhausted all the time & needing blood transfusions for aneamia there's nothing else wrong with him - no pain or discomfort & hasn't needed any sort of procedure so it seems a bit unreal

The trip to the college sounded good - whats your daughter doing ? you have a couple of other kids - are they all settled & happy ?  -sorry now I'm being nosey

I'm a sufferer with the crying thing - sometimes I find myself crying for no reason at all then other days I can be quite matter of fact about everything - on Friday it was with some idiot on the phone at the job centre who was insisting he should go for a job evaluation as he must be able to do "something"              (this is because they've finally awarded him £65 a week ESL after arguing for months but no seem determined he's got to go back to work - if only) I got rather cross when she said it probably wasn't as serious as I was trying to make out - I'm afraid I asked for her phone number so I could let her know the details for his funeral - it was rather cruel really I quess she was only a youngster doing as she was told but I was so infuriated but I felt sorry then cos she sounded quite shaken

I've sent you a friends invite if you'd like to accept - dont know why but it does seem easier to share your worries with people outside your day to day life but of course I'd understand if you dont accept -

All my very best wishes are with you

Kate

Hi Jules , Hope you are all getting on well in New Zeland. My son asked me to check his homework one night before school broke up. I found  a well constructed sentence on how I spend lots of time on the macmillan web site where we all help each other! So I have used the summer to add a bit of balance to my life.

I just wanted to add a little to your dad's cea markers. My mum only ever got to 7.4 at diagnosis despite the involvement in her liver. We were told the onc likes to see an initial downward trend. However chemo itself, cell death and inflamation can cause it to rise as treatment progresses. My mum at her 6th cycle went up to 10. after going down to 3. You can imagine our concern ,but they were not too worried. It took months to go back down.

My mum became really sore around her liver area ten days into each cycle.I could not find much info on this. It is great that your dad has shown a good responce to chemo. In my mum's health authority you do not get scanned until 6 th cycle as the prof believes research shows most shrinkage occurs during the second half of treatment. We seem to be the only ones doing this. A long wait though. I do hope if it is right you might get more good news.  Hang in there.

Love to all and sorry for back tracking a bit. I am thinking of everyone at different stages of treatment. We are coming up to the next set of scans. Grateful for them but hate them too.

love court

Hi Court, thanks for your message.  I know what you mean about trying to find some balance... it's hard when this cancer world seems to take over!  Thank you for the info on CEA markers.  Dad's oncologist said that some of his patients have markers of 6 or 7 and are totally disabilitated by their cancer and other's are in the 20,000's and are coping quite well.  He said that the actual reading itself it quite irelevant as everyone is very different, but it's more the downward trend that they are looking for to see if the treatment is working and when that stops happening is when they look at the treatment and what else they can do?  All seems very confusing to me!  I hope that you get some good news at your scan, know what you mean about hating them... such an unsure time isn't it.  Dad will have his blood tests again next week and so we are hoping for that trend of downward CEA markers will start up again!  He's getting pretty tired and very unenergetic, guess that goes with it.  Poor buggar is so bored though, never seen him lie around reading as many books as this before.  Keep me updated on your Mum's progress and love to you all XOX             

Hi all,

not been on the site for a little while as sometimes it gets too difficult.  I have asked Tuesday2 to be a friend as we seem to have similaraties such as husband given up work and it is really difficult.  if anyone else wants to be a friend then let me know.  My hubby had no symptoms at all.  It was only picked up when he got the flu and still had a bad cough six weeks later.  He had a chest xray which showed up clear but showed shadows on the liver.  He had the usual chemo by drip and then 2 weeks of tablets and then a week off from June to September.  He then carried on with the tablets and Avistan to March this year.  It was only stopped so that his body could have a rest and that the tumours had shrunk by 75%.  He had a scan in June and is now due to start all three treatments again in September.  At the moment he looks better that he has for the last 3 years.  This time last year you would not have given him 3 months.  Life is hard.  He has given up work and we have 14year twin boys.  When he is on chemo he tries to fit everything into the week that he is off the tablets.  At the start of chemo he was only really tired and bad for 2 days 5 days after treatment.  This gradually increased until there was very little energy most of the time.  This is why they are giving him a break.

As I said it has been hard but I have had some good friends to talk too.  I also fell into anger depression in May and I could have packed my bags and left.  My gp contacted our local hospice and I went and talked to their counsceller.  I thought it was a waste of time at the time but it actually helped talking to someone who was not connected to our family and did not know my hubby.  We now are on an even keel I think but hubby does not really let me know what he is thinking.  Not sure if it a good idea but he has started to take apricot kernals (B17). 

sorry to have gone on.  hope you are all managing today.

take care and thinking of everyone

Jash

Hi Jash - I'm having trouble accepting your friend invite ( probably me ) but I will get it to work.

I'm sorry to say my story is very similar to yours - he was getting tired but hey he's getting on then after a routine blood test it all went wrong- he's diabetic so has bloods done every 6 mths so within that time the bowel cancer had already spread extensively into the liver & is stage 4 - they say this is because itsso aggresive so not good but he's banned me from his appointments as I ask question & expect some proper reasons for things so now I only get filtered info so I've no idea what they say - mind if they dont tell him he wont ask- he's like an ostrich with head firmly in the sand

He struggles with not working - our oldest son has come to visit for a few days & is doing some odd jobs round the place - he's insisted on helping , going to the shops for the bits etc but is now absolutely shattered but he wont be told - I know when they've gone it'll take ages for him to get back to normal - normal now there's a word

I cant imagine how you manage with the boys as well that must be really tough- how are they dealing with it all ?.

I guess we all cope in different ways - I need the info so I know what I have to beat but he pretends anything he doesn't like just doesn't exist - drives me made but then I have to accept its his choice

I hope things are going as well as possible for one & all

Kate

Hiya Jules

Very sorry about your Dad.......not cool at all any of this Cancer business is it.....Just thought I would get in touch with ya, if I can help anyway :-)

Am from NZ too (Chch) and was diagnosed last August with the same as your Dad at age 30 (am 31 now.) Been reading and reading lots too, to try and get my head around it all..Don't really post much in support forums..been a bit scared about really accepting "cabbage situation" (what I call the nasties lol!) but saw you guys are from NZ too.. :-)

I had no symptoms really at all and the ones I had looking back now, could say was to do with other things! Just icky embarassing big bloody "splat" (Not something you really wanna tell anyone about lol!) I only told my mum about it a few days after it happened and she had me straight into Chch hospital for tests. Surprise!!! Had actually googled before saying anything about it and there was all these other reasons...right down the bottom of the page.."Bowel Cancer" Okay... Am a 30 year old female...that is not going to be an issue....Shoot.......!

The surgeon initially wanted to do a Colon resection till I had a scan and they found mets in my liver. I can't have surgery because the little nasties are through both lobes..They transferred me to Chch Oncology folks to see if they could help at all. At first he had said to me nothing could probably be done, but he would refer my case on to see. I know what you mean about worrying about being in lil ol' NZ and if we are getting the best care here! SO will let ya know my situation so far and hopefully might reassure you about your Dad :-) (Sorry to go on about me but hope you find info helpful :-)))

When I started Chemo treatment was offered option of going on a research study they are doing here in NZ, Aussie and I think US also..Run by Sirtex Technology (website http://www.sirtex.com/content.cfm?sec=aust_nz&ID=aust_nz)  I was initially offered FOLFOX6 Chemo..the FU5/Oxaliplatin (I have had the FU5 in IV/Drip..is the same drug as your dads Xeloda..just not in the pills! :-)) The trial is an extra treatment option where they are comparing the standard Chemo (Phew.....we're okay! It's the best available med. treatment everywhere at present! :-)) alone compared to the Chemo plus targetted radiation spheres into liver. It's randomized so half are just on Chemo (Me) and half receive Chemo plus additional Sphere treatment. I think you can pay for this additional treatment in Aussie and US am thinking about it for future anyways! 

The trial is good though...I have my oncologist here in Chch (who is awesome :-)) and extra support of the Chch trial research nurse (who I can ring up and hassle when I get stressed..she's great! :-)) Just the extra support you get....The Chemo treatment I'm on (like your Dad) I think is funded fully in NZ but it's just the extra support and monitoring on the trial you get which is awesome...Have also been having a CT every couple of months under the trial...peace of mind to know whats going on! :-))

Have had 20 cycles of the Chemo so far...am not totally sure but have been told that here in NZ the standard treatment is 12 cycles (6 months)...on the research program have been able to continue on! (Colon nasty can't be seen on scan and Liver nasties are nearly gone! :-))

Anyways :) Get your Dad onto a research program! ....Not just the extra treatment options.....but the support too! Have read about a couple of other Chemo drugs we don't have here in NZ...Erbitux and Avastin.... hmmmm....!

Again...sorry for going on about me! Just saw you guys are kiwis too!

Big Hugs

Rachael

Hi Rachael - great to hear from another KIWI!  Just a a buggar why you are here!  I bet you were knocked for a six when you found out that it was bowel cancer that was causing your symptoms!   Your research sounds great, I can't believe that you have had 20 cycles!! How are you coping with all that?  Sound like it is doing a good job though... kill those nasties!!   Great to hear that you have a good support network.                                                                              

My Dad's CEA went up again this time, which was a real bummer and we all felt gutted as it all started off so well and the Nasties were getting a good hiding, then they decided to fight back.  So Dad starts his new chemo 5 FU on Monday.  Orinally they told us that the 5 FU would start in around 4wks, so as you can imagine, we were all a bit worried about these nasties getting out of control.  But then they came back and said all go for Monday!! Yeah!  This 5 FU all looks a bit daunting, with treatment every 2wks, which is done through a pick line (think that's what it's called) in his arm, and then you go home for a couple of days with a pump, then back again to get it disconected.  They live in the country so an hour and a half drive each way.  They kind of said that if this chemo doesn't work then there isn't a lot of other options, and then we have a tough talk.  Very gutted about all that.  Hoping like hell that those nasties buggar off!

Well, that's all from me for now. Take care all who are reading this and love to hear from you all.  And Rachael, thanks again, and keep fighting those nasties sounds like you are doing a great job!

JULES

Hi Jules

Your posts are so full of great detailed info - thanks so much, it's really great to read and get some idea of what is going to be heppening soon for my husband.

He was diagnosed on 5th July with Rectal cancer, only picked up because he kept having the urge to have a 'pooh' - luckily in the UK we have this "2 week rule" so he was referredby our GP under that. Diagnosed on first appt at outpatients - sent for CT and MRI of bowel - CT scan showed shadows on liver and lung, so further MRI of liver - this has showed some cancer, and some cysts, all about an inch - God am I panicing! - however, he is doing gardening as I write this, not feeling at all ill, so we are hanging on to that big time.

They have now finally decided to give him chemo first - before they do a TEM - (transanal endoscopic microsurgery) but our local hospital does'nt do chemo so we haven't yet seen an oncologist!! (diagnosis was 6 and a half weeks ago!!) So... our oncology appt is tomorrow and I have been busy doing loads of research into all the drugs etc. I work in the pharmaceutical industry so I have some understanding of how the system works etc, and used to be a nurse years ago, and Terry my husband is a psychiatic nurse...

I must keep focussed... need to focus on having my questions about the chemo (and formulary, and 'why are you going to give him THAT chemo??' trying to make sure he gets whatever is best rather than just what the NHS funds - I mean, we can do an IFR can't we???) ready for tomorrow, but am finding it impossible to concentrate, as I keep finding all these threads about liver resection, SIRT, cyberknife etc etc, and just wondering how much I'm going to need to know!

Soooo much to take in...

Jules, hope your dad is doing well, and Best wishes to anyone who reads this

Mandy

A Big Hello to all, Just want to send some love to NZ. To the strong Rachael. My mum had six rounds and was so tired. It is great to hear your news.  And Jules , I am so sorry your dad had to swap chemo but send love, strength and hope to you and your dad that this new one will get to work. Also want to send encouragement to Mandy  and hope all goes well with the chemo. It can be so hard to hear about liver involvement but on a positive note the chemo managed to reduce my mum's 4 cm down to 7mm. 

I have  grounded myself again this week . Two months away from the hospital was bliss and to face it all again has been a little tough.  I keep drifting off in my own wee world. I booked a hair dressers appointment with the totally wrong shop. Then when shopping I headed off to the toilet, empty but looked a little different. Came out to find  I was in the gents!!!  I think the poor man was as shocked as me.  So I am heading away for the weekend, hopefully clear my head.

Stay strong everyone.  love court