im a 42 yr old male living in ireland (rep) 6 yrs ago i was diagd with fap
following on from an immeadiate illeostomy, i felt great for 6 months , then 7 desmoid tumours appeared, which was diagd terminal.
i had a 16 hr op to remove 5 orange sizes tumours and 1 3stone tumour measuring 1foot by 1 foot by prof robin phillips in st marks , harrow in london. i am now left with only 80cms of bowel left, all large and small bowel gone, now left with short bowel syndrome,chemo and radium has not worked, i now have 3 more tumours on my right psoas (spelt right?)
which is blocking my femoral artery causing restricted blood flow and bouts of low blood pressure, nothing can be done they say. also i have 3 tumours in my left quadrant causing major probs, again they say , they cant op, because they say the more they op , the more they grow back,is this true? im also facing up to tpn, why is this?
my condition is terminal, they say at best ,maybe 3 yrs at best.
for pain im on actiq 6by 600mg and 2 by 200 mg, oxycontin by 140mg daily along with a host of other tabs like tamoxifen , fareston. calcium, iron etc. any ideas for this condition that i have ?
none of my siblings have it nor any one going back generations,however
my 21 yr old daughter has now been diagd with fap and has a pouch fitted
last yr , which is not working great.thank you
john
following on from an immeadiate illeostomy, i felt great for 6 months , then 7 desmoid tumours appeared, which was diagd terminal.
i had a 16 hr op to remove 5 orange sizes tumours and 1 3stone tumour measuring 1foot by 1 foot by prof robin phillips in st marks , harrow in london. i am now left with only 80cms of bowel left, all large and small bowel gone, now left with short bowel syndrome,chemo and radium has not worked, i now have 3 more tumours on my right psoas (spelt right?)
which is blocking my femoral artery causing restricted blood flow and bouts of low blood pressure, nothing can be done they say. also i have 3 tumours in my left quadrant causing major probs, again they say , they cant op, because they say the more they op , the more they grow back,is this true? im also facing up to tpn, why is this?
my condition is terminal, they say at best ,maybe 3 yrs at best.
for pain im on actiq 6by 600mg and 2 by 200 mg, oxycontin by 140mg daily along with a host of other tabs like tamoxifen , fareston. calcium, iron etc. any ideas for this condition that i have ?
none of my siblings have it nor any one going back generations,however
my 21 yr old daughter has now been diagd with fap and has a pouch fitted
last yr , which is not working great.thank you
john