We are Macmillan. Cancer Support
Hello everyone - my first post here!
My 42 yr-old sister was diagnosed in April with adenocarcinoma of the bowel and subsq' secondaries have been found in her liver, lungs and lymph glands. She has had the tumour removed but is also suffering with clots on her lungs (post-op) and a debilitating loose cough - and is due to start her chemo' Tuesday - today she went for her pre-chemo checks and they rang this afternoon to say that due to raised enzymes she cannot now have the part of her chemo' (Xelox) that involves taking tablets at home for 2 weeks and INSTEAD must have a permanent line inserted at her elbow and have a 48 hour treatment by bag every two weeks. Having done some research this seems to be a PICC line??? It seems her liver couldnt support the capitezibine(?) tablets in its current state.
Does this mean her liver secondaries are worse than thought? Is this new option an inferior treatment...ie: does it reduce her chances ? We know she is stage 4 and cannot be cured but we are hoping for a few years!!!!!!!!!!!!
We just seem to get bad news every other day!
Really sorry to hear about your sister. I can only comment on what I have learnt from my Mums treatment for bowel cancer that has spread to liver, lungs and lymph nodes. Read my lengthy (!!!) profile if you want to know more about my Mums diagnosis and treatment.
Her first line chemo was CAPOX every 3 weeks - oxaliplatin on a iv drip and then capecitabine tablets, twice a day for 2 weeks. Capecitabine converts to 5FU once in your body. Unfortunately this treatment did not work so we are about 3 cyclesin of a planned 6 to a second line treatment FOLFIRI every 2 weeks - irinotecan and folinic acid on an iv through a Hickman or Central lie in her chest ( more about that in a minute) and then a little battery pack pump of 5FU that she goes home with and lasts for about 48hrs before it needs to be removed by district nurse at home.
She was supposed to have a PICC line in her arm but they had probs finding a suitable vein as her veins were quite small and thin so in the end they gave up and decided to do a HICK in her chest instead. Both sound horrid but you soon get used to them.
To best of my knowledge your sister is not being 'short changed' by having the 5FU intravenously instead of cape tablets. Sorry - I have no idea why if the liver function is not 100% then its better for the body to have 5FU intravenously - maybe its just easier for the body to cope with, chemical reaction etc
I hope this helps, feel free to contact me anytime.
Big positive hugs to you and your sister, keep your chin up
Thanks Louise - that has helped alot!
In my sisters case she had her abdominal pain put down to IBS - her age is 42 so that clearly didnt help (too young) No family history we are aware of ! When the pain came again she was hospitalised with poss' appendicitis. A scan showed 'fluid in the bowel' but nothing developed from there. Her pain passed and she went back to work only revisiting her GP when the lumps came up in her neck. Her GP thought them of no concern and said come back in a week - she did and it blossomed from there quite rapidly!!
We are looking into Avastin but i have to admit the cost is prohibitive - i understand ther emay be a NICE review with Roche reducing their price but will it be soon enough???
My sister, my 76yr-old Mum (who herself is recovered from Non-Hodgkins 6 years ago & a stroke last year) and myself had a lovely day shopping in Derby yesterday - sis had a Motability scooter and it made all the difference! I had a real wobble when, at one stage whilst sitting outside a changing-room whilst they were giggling inside, i realised that i am going to loose both of them in the not-to-distant future!! Must stay positive!!
Glad I could be of help.
Re Avastin, we also looked into funding it ourselves, we not wealthy just ordinary working family but as a family we were going to collectively club together.When we first enquired just before Mum started chemo we were told nothing to lose by delaying to see if the NHS treatment worked first. Unfortunately this proved incorrect as the CAPOX did not work and during this treatment the cancer actually spread more to the peritoneum and to add Avastin now would be too risky as one of the side effects can be small tears to the bowel wall and with the mets now there, we ere advised against it. I don't want to scare you but if you want to and can fund Avastin do it sooner rather than later.. wish we had, as now have that devil on my shoulder saying would we be in a stronger position now if we had.
I did a lot of research into funding private treatment alongside NHS treatment to keep costs down so please shout if you have any questions I can help with.
Re what the future holds, I just wish I didn't know, getting a cancer diagnosis just seems to rob you of living a 'normal' life with a que sera sera attitude .. but after a year of living like this I've learnt life doesn't stop here and now, tomorrow is another day to live life to the full as much as possible.
Let me know how your sister gets on - she on same treatment plan as my Mum and she had 8 cycles so if I can give you any tips on what made things easier for Mum be glad to help
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