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

Hi to all!!

Well Dad got his picc line put in started his 2nd line chemo "folfiri"  (amazing -  ask me all this six months ago and i wouldn't have known all these cool names!)  All went well despite travel to and  from treatments and cleaning and cleaning of picc line... then last night Dad got severe pain and was crippled over and ended up in the local hospital.  He's now doesed up on morphine and at home and seem to still not know what the pain is all about. He is still booked in for chemo on Mon so we presume that is sill happening??  He said the pain was on his left side under his rib cage... The locaL GP said something about maybe the cancer has hit the bone!!!  Still don't know and are hoping this isn't the case!!  Since Dad's  been at home he is doing OK and feeling OK, but of course still on pain killers.

Well i need some good news from all my followers out there... so don't be shy!! Love to hear how things are going with your all. 

So we are hoping for chemo on Mon and that things are all good!!  LOVE LOVE AND HOPE TO ALL XXX

JULES

Hi Jules

Sorry to hear your Dad has been in such pain, in my experience GP's (certainly in the UK) know very little about any kind of cancer so don't let this comment worry you. The GP should just be prescribing what the specialists recommend for pain control etc and offering support.

We're very lucky, our GP is fantastic. Partly I'm sure, because we know her so well. Terry has had quite a few bouts of bad hiccups, and the GP has advised that he take the metoclopramide for that, she also explained that the reason he wasn't sleeping too well may be the side effects of the steroids (in his case Dexamethasone) which apparently make you euphoric! So she's prescribed sleeping tabs for the next cycle when he is on the steroids again.

Terry has now started his chemo - XELOX - last Friday - which was my birthday, a lovely way to spend the day, but to be honest we thought it was a good omen that finally the nasties were starting to get blasted - that was a fantastic present! His consultant has told him that when the biopsy report comes back, he will add in Cetuximab to the XELOX if he has the 'wild type K-RAS' gene, and if not will try to get him onto Avastin.

Terry is coping really well - he has mega tingling in his hands, particularly if they get wet or cold, when he says he feels like they have lightning bolts coming out of them, not painful as such, just weird and uncomfortable. Now that the capa tablets have started to really kick in, he is starting to feel really tired. But absolutely no nausea/vomiting - so take heart anyone about to start, it's not all doom and gloom! The day after the IV Oxaliplatin, we had friends round for the day, and the next day, we pruned one of our climbing roses that was threatening to take over....

We are trying now to be really positive as the onc has said he hopes to be able to 'cure' Terry - however, we have to be realistic.

Hope you're all managing out there - I think of you often, wish there was something I could do to help, but have my hands full at the moment!

Take care

Mandy

Hello everyone,

I'm new to this thread but have so much in common with quite a few of you.  My husband has stage 4 bowel with extensive liver mets. He is deemed inoperable and incurable and is having palliative chemo.  He was diagnosed April/May and was told the primary had been there for about 3 years.  He had been completely symptomless for over 2 years and when he became ill it took about 8 months to find the cause because his only symptoms were tiredness and shortness of breath, both of which, we later discovered, were due to severe anaemia.  He was started immediately on Oxaliplatin and Cape tabs, but he tested positive for K-Ras wild type so was changed to Oxaliplatin + 5Fu and Cetuximab.  He is doing really well and is a lot better now than he has been for ages, Mandy he (Nev) also gets the terrible tingling in his hands plus if he touches anything cold he goes through the roof.  The main side effects are caused by the Cetuximab, terrible acne, but this is "desirable" as it seems people who react in this way fair better than those who don't and splits to the fingers and heels which can be very painful.  He has never experienced any sickness. He is due to have his first scan since chemo began on 14th Sept. and I am absolutely dreading it, I expect everyone knows what thats like!

Hope everyone is doing ok

Take care

Ann

Hi Jules,

I have had a right hemi-colectomy and now have mets to my liver. I'm on Oxaliplatin + Xeloda - about to receive my 3rd cycle of chemo next Thursday.

I have constant pains in my abdomen, and sometimes in my chest. Not every night but sometimes I have to take pain killers to get any sleep at all. I feel awful almost all the time.

I think your Dad is receiving the standard chemo treatment for his combination of cancer. Some chemo consultants add Cetuximab if you're genetically suited to that mono-clonal antibody. However the latest studies in the USA, reported this year at an annual conference of US Oncologists, is that Cetuximab is not effective. That was on a trial of about 1600 people - so it is significant, particularly as the patients were also on Oxaliplatin + Xeloda.

The other drug which is considered is Avastin, but the truth is that on average (and that's an important qualification) it prolongs life by only a matter of weeks. Apart from that it is staggeringly expensive and is really not cost-effective - even less so when you find out about the possible side effects. Gastro-intestinal rupturing is one possible side effect. If the doctors don't recognise that within 48 hours the patient will die - as simple as that. The balance between risk and reward for Avastin is in my opinion not worth it.

Don't worry about living in NZ, your Dad is by the sounds of it, getting good treatment. Just do all you can to minimise the ordeal he is having to go through. And I can assure you it is a real ordeal. It's the greatest challenge of my life so far.

I am taking all sorts of supplements in an effort to minimise chemo toxicity and to maximise chemo effectiveness. I will never know if they're effective but I'm taking them all the same - (after consulting the pharmacy team at the hospital). I'm also exercising every day - gentle gardening and so far 15 minutes on a rowing machine that I bought specifically to help me through. It's hard doing the rowing when I feel so awful but everything that I read tells me exercise is crucial. I used to play tennis once or twice a week so I have been reasonably fit for a 65 year-old. In fact those that I play tennis with me refer to me as speedy Gonzales as I used to run down every ball. I look forward to being able to do that again - got to have a focus.

Enough for now.

Hi annfran,

Each stage we reach is 'dreaded' by us all. So have strength and just deal with the results as you find them. We have cried, been depressed and with help from family and friends managed to lift ourselves back up again. Just keep going and do everything you can to lift your spirits. I have been advised to keep well clear of everyone so as to reduce the possibilty of catching whatever is around (because my immune system is so compromised by the chemo). So we visit beautiful gardens and keep out of doors as much as we can. I don't even go into the supermarkets - I sit in the car and wait - it's boring but safer.

So although you dread Sept 14th just be calm and ask yourself and the chemo consultant what can be done. That's all that you can do that is positive.

Hi

I am new to this group but I have decided to join you because my fiance 34 years old has been diagnosed with IV stage duodenal cancer (small bowel). There is no protocol to treat it because is rare. Depending on doctors, duodenal cancer can be treated as colon, stomach or pancreas. I have an evidence that biological drugs are working too. His cancer spread to distant lymph nodes but all organs are still clear. Doctors are very pesimistic and keep palliative approach only but according to the info that we found he still has chances.

I am trying to get as much as possible evidence for Gregory's oncologist about people especially with IV duodenal adenocarcinoma or IV small intestine adenocarcinoma who got Avastin or Erbitux with chemotherapy or without chemotherapy. But any evidence will be great. Please let me know if you had good outcomes and give some details like: chemotherapy regimens, other drugs, length of the treatment and outcome. I will be trying to persuade the oncologist to add biological drugs to the chemotherapy that is not simple in UK if even impossible... But I have to try everything... SO PLEASE HELP!
Magda

magdawojnar,

Do all your research online - use Google extensively and also look at the NICE website.  If you can find it also have a look at the drug manufacturers' websites and at their drug information. As with all chemo drugs there are risks and rewards so read carefully. Chemo is horrible - I'm undergoing it right now. Just keep going and make considered judgements. For example so called 'wonder drugs' all have significant side effects and don't always achieve the manufacfturer's claims. Be careful. Do NOT give up - where there's life there's hope, but without hope there's no life.

Get support from family and friends - talk and talk again.

Hi folks

Another good place to get drug info (other than the macmillan site of course) is electronic medicines compendium, which can be googled. Look at the patient information leaflets (PIL's) or if you are technically minded, the SPC (summary of product characteristics).

I've downloaded all the relevant NICE technology appraisals - the summaries are helpful - and looked at all the cancer charities websites - there are often useful links. NICE make judgments based on populations but generally,if a drug is really likely to help, then NICE will recommend it. In any case, don't forget you can apply for individual funding if your consultant supports you.

Hope this helps

Mandy and Patrick

Thanks very much for your reply. The problem is that nothing is approved for small bowel cancer but I am in touch with people who had good results with biological drugs despite of their doctors' pesimistic view...

I will be searching and keeping hope...

Magda

Magda,

Completely ignore the fact that nothing is 'approved' for it. I have met someone who for 14 years has had no gut at all - totally removed. I had never heard of such a thing but I met her whilst in hospital when I had my right hemi-colectomy and she was a happy woman.

If you're in the UK then get yourself assigned to St Marks in Harrow as it's the reference hospital in the UK for colorectal cancer. The top surgeon there is Mr Robin Kennedy. He's very incisive as well being a caring man.