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

Hi Fanny, great to hear from you also.  Pleased this has lifted your Dad's spirits!  Dad is coping pretty well with the treatment.  He hasn't felt sick at all which is good.  He is a little bit tired, but nothing to bad.  The main side effect that he is getting is the numb and tingling in fingers, and for a few days after the treatment everything that he touches feels like ice, also can't drink cold things.  Now he knows what to expect though, he just adjusts a few things and is all quite do-able.  I must say Dad was a bit scared before his first treatment, but now knowing what to expect he just takes it in his stride - and of course seeing the tumor markers go down has made him feel very positive about it all.  I hope all goes well with your Dad's first treatment too.  They told us, that if this treatment didn't work then they will try another 'cocktail' until they get one that will as we are all different.  This made me feel good, as then I didn't put all my weight on just this treatment.  Good luck and love hearing from you!!

Jules                   

Hi - I'm new to this & struggling with the site a bit so I hope I'm posting this to the right place as it seems its a while since anything was added.

My husband is recently diagnosed with stage 4 bowel with liver mets with no chance of surgery - we're waiting for him to be assessed to see if any chemo is possible

Although he obviously is seriously ill ( he has become so ill so alarmingly quickly) he is trying to ignore it - I'm forbidden from attending appointments with him so am only getting the "filtered information" & he doesn't want anyone told including the family - frankly I feel really alone & need some support but he doesn't seem to get it - his way of coping I know but hard non the less.

Anyone got a "cunning plan" that works

I hope everything is going as well as possible for you all & that you are finding some peace in your life - I think thats what I miss the most

Hi, I am new to this too, as I read your post it really reminded me of my dad, he is in denial and thinks that by not telling us the info that he is protecting us. Little do they realise that they are robbing us of the chance to support them fully and also to have the knowledge of what to expect, this I think makes me feel even more scared. My dad has gone downhill very fast and is in and out of hospital with infections continuosly, Im sure that they will be able to offer chemo, my dad was given one and it worked well for the cycles, they then left a gap and his body rejected the same chemo at the next attempt a couple of months later. They are trying him on a new one now, hopefully fingers crossed it will give good results, I do feel for you, it is like trying to live a life in limbo, my thoughts are with you both and wish you the very best :-)

Hi there Liz1718 - thanks for your post.  I am sorry to hear that your Dad has rejected the last lot of chemo... like you say fingers crossed for the next one to give some positive results.  It's so hard seeing your once, active healthy Dad having this disease - it really does suck!  My Dad is doing OK, though reading and lying on the sofa a lot, as his liver is still enlarged he gets uncomfortable.  The chemo is doing well, his CEA levels have dropped from 1700 to 300 so that is positive, and his liver function tests are on the way to being more normal.  The latest scan showed that cancer in his liver is coming back and appears to be dying, but still a lot in there.  I still don't really know what all that means, but it's got to be positive!  I just really wish that his liver would reduce back in size as it is this that is making him slow and uncomfortable.  Has anyone else had this problem?  He is coping well with chemo, you know the usual tingling in fingers and face and really feeling the NZ winter!  But no vomiting, or feeling sick so that is good, just a bit tired which I guess is to be expected.  It is really positive to hear from other people going through the same thing, so thank you... really love hearing from you all Xxx

hi Tuesday 2  - I just read your post.  It really is a hell of time isn't it. My brother and I were with Dad and Mum at the oncologist when we got the news... it was so hard seeing your strong Dad who has always been there for you to get this terrible news, really breaks my heart.  I too have struggled with this and remain possitive, for Mum and Dad - but it takes it's toll on us all, feel like we are on a time bomb.  Dad remains positive too, and I think a bit like your husband a bit in denial also - which is hard.  Well I hope that you and your husband work it out together and that he resonds well to chemo - my thoughts are with your both x

Hi Jules - Hope your Dad is ok & your managing to keep cheerful.

Malcolm has now started the 2nd cycle of chemo & doesn't seem as ill as he was so I'm hoping its the chemo reducing the cancer but  I know thats not really likely but then I wonder if they've got it all wrong & its all under control - then I remember the letter to our GP saying they were giving palliative care & the consent form said to "control cancer" not "treat or cure" & I'm back to square one - this all whizzes round my head 100 times a day - luckily I'm really busy at work which is the only time I get any peace

All the staff at the hospital have turned into saints in his life despite them endlessly messing him about ( including a social worker who has spent 4 weeks  messing with the forms  for his claim for benefits when she's supposed to be the damn expert ) & anything I do is nothing I know I shouldn't moan but I feel so isolated- sometimes it just all seems too much - I spent sunday afternoon trying to pretend I was gardening in floods of tears from something or other he'd said - then I feel pathetic

I work from home so am here quite a lot of the time - he cant work any more so he keeps saying his job his now being on tea & sandwich duty  for me whilst I'm working in the office & if he feels ok may push the hoover round the living room or empty the dishwasher - I've said he doesn't need to do it but he said he needs something to do as he is so bored then I heard him on the phone to his old boss telling  him  how I dont appreciate how ill he is & how hard I'm making it for him as I expect him to do everything which is too much - it so hurtful he made me sound dreadful but when I try to speak to him he just refuses to talk & walks off - I've worked the last 13 days without a day off as well as doing house stuff so I'm pretty whacked so then when he made some crack this afternoon about how I dont do anything I blew up & yelled " how dare you" he stormed off & wont speak so now I'm sat getting drunk alternating between being fuming mad with him & being fuming mad with myself for shouting at him

I married him at 18 so at 53 I've sort of got used to him - Who's taken my lovely dependable strong husband cos I need him back -

Hi Tuesday 

So sorry to hear you are struggling like this. It's a very lonely time watching your partner go through this. My husband Bob has just had his second liver op and is getting back to normal.There were clear margins around the tumour which was really encouraging and the surgeon was very pleased with the results, but after the last op on the liver the cancer came back very quickly so we just have to take each time as it comes. We see the oncologist next week to see if any more chemo is needed. But the important thing our oncologist has always said to her patients is you must never give up. Have you looked at  any trials, one offers cetuximab a biological drug which works in combination with the chemo. Ask if there are any trials going, panutab is a trial drug used for inoperable cancers. It certainly is worth asking about and the cancer research site gives good info about trials taking place.

Keep going Tuesday and don't forget this isn't your husband talking, it's the cancer and fear. Talk to your Macmillan nurse about how he's coping with the illness, they are so good about this sort of thing. We have all cried buckets on theis site and understand how you feel and what you're going though.

Love Judy

Hi tuesday am new to this site also and trying to get to the right forums not sure where to start there is so much! Really feel for you, it hard to be around someone who has cancer you feel so heopeless that what my husband keep telling me. I have been dignosed in march stge IV bowel cancer spread to the lining of my tummy so they cant operate, well they did do a laparoscopy and put stoma in place, i have had 6 lots of chemo only to be told yest it s not working and  that i  have a mass around my ovaries quite large too! i was devasteted to hear this news so they stopped the chemo ( I was on oxaliplatin and capecetabine tabs) and they are sending me for an ultrasound to see what that mass is.... I am scared and yesterday couldn stop crying, today i had alovely morning I went to an open day at college with my youngest daughter and for the first time in months the day wasn t about cancer or treatment or feeling poorly. All I do is wish you all the best, keep strong and try and remain positive let me know how you are getting on, try and take a break or go and see a friend you need a lot of care too, you need to look after yourself.

Best wishes

xxxxxxxx

Dad just had another cycle of his chemo, 6th one now!!  His CEA level went up '1' this time, to 301 (Down from 1700 originally!).  The oncologist said that it could just be a glitch, as it does happen sometimes.  A bit of a downer though as things appeared to be going so well.  Has anyone else experienced this before?  Just last time we got the scan results and the chemo was reducing the tumours in the liver, and his CEA levels have been coming down nicely.  They said that if it doesn't come down with the next blood tests, in three weeks, then they will change chemo to 5 FU (Irinotecan with flouroucil and folinic acid)  This looks really daunting, a lot more sessions and of course the loss of hair.  It looks a lot more intense, which is scary as he has tolerated this chemo he is having now so well.  Could anyone tell me how this 5 Fu chemo is for them?  Well I know I shouldn't worry about things at this stage, until we know, and thank GOD that there are other chemo's out there if one fails.  As for Dad, he is doing OK, fingers crossed that this cycle of chemo does better!           

Hi ya so glad your dad is doing ok with the chemo, was just reading up about the 5Fu and it does seem daunting hope your dad s bloods are ok and he doesn have to go through with it.....