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

Patrick,

Sorry you are feeling so unwell, hope you can sort something out today.

Judy,

Hope Bob is ok, do you know much about SIRT or Cyberknife for liver mets, I'm ready to sell the house if necessary!

Jules, 

How is everything going?

Take care everyone

Ann x

Ann I know nothing about cyberknife, but quite a bit about SIRT which a good friend of mine has been put forward for. It is only for liver mets, if the cancer has spread elsewhere they won't use it. It is not NICE approved, but funding can be applied for to your PCT. Hers was denied even on appeal and her oncologist was shocked as she had had success with other PCTs. She has now convinced the Royal Free that she only pays for the actual procedure and medication which will cost about £8000. If you have to self fund the lot it is over £20000. However in some cases it has had very good result. A lot of prep scans etc are needed, because of couse the radiation beads have to be precisely placed. The really good thing is you are only in hospital overnight although feel poorly for a few days after. Ask your oncologist about it, or ring the Hammersmith and ask, as they are a big liver and pancreac centre. if you want more info let me know and I can email my friend.

hope today is a better day patrick for you.

Love Judy

Hi all and thanks for asking how things are Annfran.  Dad isn't going that great, really really tired (sleeping most of the day, and can't be bothered doing a lot) and last night couldn't even eat a roast lamb!!  And today had diarrohea, today he started to take the tablets for nausea and diarrohea so hopefully that will help.  He hasn't had to take them before.  Still can't find any information erbitux, really don't think it is funded.  Last time we saw the onc.  I asked about Avastin and she said that is very expensive and is only proven to give a couple of extra months??  I would love to hear comments on this, as this is contrary to what I have read.  That was from the registrar not our usual onc.   All so much information, very confusing.  How are you going Patrick?  I hope getting on top of things.  I told my Dad today, that if these pills don't make a difference then he needs to tell the Doctor so they can help.  That is the first thing that the onc. told us - yes common to feel tired, nausea etc with chemo but if it is excessive then they need to know as they can do something about it.  I would hate to think that Dad, or you Patrick are feeling crappy if there is something that they can do!!  Thinking of you all!

Hi All

I have been reading this thread since it started and I did add a comment on the first page.  I have not added since as I find myself getting quite depressed reading the comments on the site not this thread.  I am in a very similar situation to Annfran although my hubby Alex was diagnosed 18 months ago.  Last may he was so ill that it was hard to believe he would make it to Christmas.  However he started chemo in the June and from the first dose he started to look better.  I won't say feel better because of the side effects.  He has bowel cancer with mets on the liver.  He started with Oxaliplatin/capecitabine/Avistan until october and then the Oxaliplatin was dropped and then he carried on with the other 2 until March this year.  The reason was that the side effects were becoming too much and the shrinkage in the tumours were minimal so it was decided to have a 3-6 month break.  He had a scan in Junw which showed the primary tumour remaining unchanged.  but the liver had appearance of several small new liver mets and also a tumour on the lymph node near the liver!  Therefore he started all 3 drugs again at the beginning of September for 4 cycles.  We are getting all this on private medical so fortunately we are not having to pay for the Avastin.

The reason I have decided to write is because Jules mentioned Avistan which Alex is taking.  He seems to have very little side effects from it although he has been quite amazing during the treatment with no nausea.  It is hard to know what drug causes which side effect but without the oxaliplatin he did not get the cold feeling and gradually the hands and feet stopped becoming very dry and cracking. ( He had purchased a hand hot wax bath which seemed to work quite well).

Personally I am struggling through all this and I have seen a counsellor once which helped a little.  Alex gave up work last December so I am not sure if it is having him around all the time which is hard or the cancer hanging over us all the time.  He still manages to play golf and go fishing  (sometimes getting up at 5.00am) but it appears in unable to walk the dog  or get up once a week to see the children off to school.  Sometimes I just want to scream so loud!

I am really sorry to hear that Patrick is not feeling too well at the moment and I would agree with Jules that he must call the doc if he cannot keep anything inside him or he will end up on a ward having a liquid drip.  

Annfran, I know we made friends on here and I keep meaning to pm you but sorry not done so.  I have followed you on here and I hope everything goes ok tomorrow.

I will read through everyone elses comments and get back to any I wanted to comment on but have forgotten to.

Take care all of you

Jash

Hi everyone,

Sorry I havn't responded, I've been in a bit of a faff over the scan.

Judy, thank you so much for the info on SIRT, I will certainly return to the subject if it becomes necessary.  Have you heard about the rest of the scan?

Jules,

I'm sorry your Dad is not feeling great,  I hope the hospital can sort him out.

Patrick,

Are you feeling any better?

Jash,

Nice to hear from you.  Sorry, but I had to chuckle over the golf and fishing.  Not so long ago I had exactly the same (Nevs in a band), he could always manage to go out in the evening for rehearsals and gigs, but nothing else funnily enough!  I Think having them around all day when neither of you are used to it is very difficult anyway, without everything else .  It is such a weird life though isn't it, never really knowing whats going to happen next.

Well, thank you all for your good wishes for the scan.  The tumours have all shrunk!  They are going to give him another 3 cycles of chemo and 6 of cetuximab then re-scan to see if they can do a liver resection, I am really praying for that to be the case.

Take care all

Ann x

Hi Ann Can absolutley identify with the scan feelings but what wonderful news, you must celebrate and raise a glass. Hope this has given you a great boost. Bob gets his results tomorrow of the other areas of the body and have already begun to get that sick feeling a few days ago, just trying to keep busy.

I can't imagine how hard it must be Jash with young children, you must be rushed off your feet. our kids are grown up but I know when they come and stay chaos ensues with in 5 minutes.

Love judy

Judy,

My fingers are very firmly crossed for you & Bob tomorrow, the waiting is so awful isn't it?  Do let us know the outcome.

Am raising that glass as we speak, I was so relieved when the onc. told us.  I've just got to get through 6 weeks of chemo and another scan...........no worries eh!

We have a 30 year old child (?) living with us, consequently chaos ensues every 5 minutes, it is a man cub so we have the old stag/young buck thing happening, drives me insane!

Any way Judy, deep breaths and stay calm.

Take care everyone

Love Ann xx

Ann that is such fantastic news for you amd Nev!! I am so happy for you!  Judy, fingers crossed for you and Bob also!    Dad has spend two nights in hospital and probably will have more.  His nausea and diarrhorea didn't get any better and wasn't eating.   They have done a whole lot of tests... which I have no idea what the results are, but they have put him on an antibiotic (So it does sound like he has picked up some virus or something that has knocked him badly).  So hopefully that will kick in and he will start to feel better soon.  He doesn't like being in hospital (Who does I guess!!), so hard knowing he is there.  Mum and Dad live 1 1/2 hrs away from me so hard as I haven't seen him.   This will no doubt delay chemo for another week again.  I await some good news from you Judy, and Ann I know you will be still smiling which is great stuff!!  Patrick how are you at present?  I hope all out there are getting through this and finding some smiles out there too!

Jules xxx      

Well, Dad is still in hospital and we still don't know a lot of answers.  It's so hard, being 1 1/2hrs away and not knowing what on earth is going on.  Mum tells me he is very poorly, but then I think of the last CEA only around 2 wks ago that was reducing again... Oh I don't know, Mum is talkng very gloom and doom, and well  I'm at lost... I think yes he has an infection that we have to work through and be strong through, but we are still keeping the cancer at bay....  Please give me your honest reply's and good news stories too!!! I love hearing of all the good on this sight.... so many of you are so inspirational! XXX  My family and I are going to see Dad tomorrow... XOX

Hi Jules,

Not much point in being anything other than honest really!  All I can say is at the stage your Dad is Nev was exactly the same, white blood cells hit rock bottom, temp. through the roof, infection, hospital on i.v. antibiotics.  He was in for a week and I was very perplexed as to how he seemed to be getting worse rather than better.  He too missed a week of chemo and we really noticed the difference.  His bloods were all over the place and things looked very bad.  He saw the onc. who prescribed GCSF injections (they improve production of white cells) from then on things have only gone up and, well, you know where we are now.  That was my (very long winded) attempt to say try not to give up just yet, I almost did and it was awful.  No one can honestly say what will happen, everyone is so different, but, as someone (can't remember who) once said "it ain't over 'til its over" (actually, I think its words to a song from my youth)!  I do wish you had access to MAB drugs, I'm sure that is what has really helped Nev, I'm sure they are available in NZ, as for funding, obviously I have no idea.  I would press your onc. (organ grinder, not monkey) on mono-clonal antibodies.  Cetuximab has only recently been available here on the NHS, Avastin still has to privately funded.  The tumour has to be a certain type (K.RAS Wild Type) for them to be effective.

I truly hope and pray that you find your Dad a wee bit better when you see him tomorrow.

Take care

Love Ann xx