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

Hello All,

My father recently passed away but sounds like your family members are all doing really well and I always ignore the stats its completely individual..if anybody has ANY queries or are worried about any symptoms please ask me anything, ive seen everything, i wish i had read this forum ages ago but have learnt everything the hard way and now consider myself an expert...:p

Only wish the national screening programme that is being rolled out had been rolled out 3 years ago could have saved so many lives

Exciting to hear cetuximab is being funded in places..my dad couldnt get funding on nhs

Best of luck to everyone

Sarah x

Hi all. Thanks Mandy, for your wishes. Dad is having another chemo cycle as we speak. He had a nice weekend away, but vomited again after having a lemon fizzy drink then one of his milkshakes (the ones from his Dr, to boost up his weight) - maybe that was a bit much for him, or anyone else have any ideas?  Good luck Mandy for Terry's progress on his treatment.  Sarah, lovely to hear from you also,  I am so sorry that you have lost your Dad to this horrible dieases.  Thank you for your support, and your obvious knowledge I'm sure will be useful!  I often joke to my husband that I should be an oncologist!  Love to you all and will keep you posted on my Dad's progress, we aren't going to see him today as my kids are all full colds!

Jules XOX

 Well it wasn't a good meeting. There are six tumours most microscopic, but it means a lung resection is out of the question for the moment. Bob will have a portacth fitted and then have oxaliplatin and avastin, hoping ot will shrink the tumour enough for something , or maybe just contain them. The oncologist hopes for a good result, perhaps enough to ablate them. We are just exhausted, more disappointment. Bob seems to have taken the news in his usual way, the rest of the family is not quite so matter of fact. 

Sorry not to have better news but there we go. He looks well and we are still going to Berlin in a couple of wekks time as the oncologist has suggested as we won't be able to get away for a while. We'll get our heads round it soon and then the fight will begin and that chemo had better be ready to see some action.

love Judy

Well Judy, as you know chemo can do wonderful things!  Try to enjoy your holiday and re-focus when you get back.  

Dad was meant to have chemo this morning, but they saw a rise in his potassium levels and are keeping him in hospital and doing a scan tomorrow morning as it may be a blockage... maybe that's why he has been sick lately?  Oh I don't know I just hope that they can sort it out so he can start to feel better again, and get back into chemo! XOX      

Hi everyone,

Sarah,

I'm sorry about your Dad and thanks for your kind offer, I sometimes think people on here know more than the medics.

I have a question, how do you ever manage to get your head around this poxy disease, or is the truth you don't?

Poor Bob, you must be going out of your mind Judy, and you Jules, I hope they sort your Dad out soon so he can get on with his chemo.

I am sitting here,once again, worrying about Nev.  He was taken into hospital on Saturday with what may be a bowel obstruction, he's really quite poorly at the moment.  Its so difficult telling people shortly after the good news re. his scan.  We were hoping to get away for a few days between chemo sessions, back to the drawing board on that one!   I hope you and Bob manage to tame the beast enough to enjoy your holiday Judy.

Ah well ladies, the struggle continues.

Love to all

Ann xx

Hi Judys,

I have stage 4 bowel cancer with liver and lung mets. I had successful surgery on liver and bowel (together) but so far chemo has failed to shift the lung mets and now there are "about 6". I  was hoping for ablation but it seems unlikely now. I had 6 months capecitabine, -no shrinkage, 3 months 5FU- growth so now am on irinotecan and getting a scan in late Nov. Hope you have better results from the chemo. Have a good holiday.

Love Jen XX

Hi all, and Ann - why is it that on this roller coaster ride we are never on the top for long enough to enjoy it...? What Nev is experiencing sounds similar to what Dad is dealing with.  Has Nev ever had his bowel operated on at all?  Dad hasn't and is having a scan this morning to see what the go is, I'm just frightened about what else they may find on the scan as we haven't had one for a while and of course chemo has been interrupted quite a bit.  Well Ann chin up that they operate and sort this out and he starts to feel better again... we all keep on going and try to find smiles inbetween!  XOX    :  - )    

Ann...I am only just starting to get my head around the disease now..which is sad that its after my dad passed..but only now can I look at clinical trials and drugs and symptoms..at the time..everything is too scary..I didnt want to know what it meant when my dad got a croaky voice..or shoulder blades started to hurt..he didnt want to know either! I think youre all very strong and brave for being so knowledgeable about drugs and cycles and symptoms..i was truely ignorant..on purpose! but I think it will help you

Jules you are right about the rollercoaster....treatment is very odd highs and lows with new problems cropping up all the time and you just wish for a few days of normality..did it turn out to be an obstruction? i wonder if they would do a bowel op..i suppose its to do with the trauma of the op and the time wasted on recovery when the really need to keep on at the mets with chemo

I do think we should probably all re-train as oncologists but I would give everyone every drug they wanted lol

xx

I have been out of the swim on this thread for the last two weeks. Almost exactly 15 days ago I had to call the ambulance at 1:00am to take me to hospital. I was in day 9 of my 3rd XELOX session and everything went pear shaped. Black diarrhoea, gripping stomach pains and violent sickness. I then spent a week on drips and antibiotics without food. I've lost 5kg and at 5ft9ins I now weigh 9.5stone. I'm weak, tired and unable to stand up from crouching without pulling myself up. This has been a nightmare. So far I have only completed one full chemo session and yet they tell me my liver mets appear (CT scan) to have if anything shrunk a little. Meantime I felt as if I wasn't going to survive that ordeal.

Next week is a meeting with my oncon who has been reluctant to accept it's all been caused by the chemo but she has been pushed to accept that that is the only explanation. It's all very hard work and I feel very alone in this struggle not just with the chemo but with the oncon.

oh dear patrick..that sounds awful..black stools was it melena? surely you need a chemo holiday..it might be helping your liver mets but QoL sounds so awful..they really need to review your drugs dont they..have you been reviewed by the pain team?