Hi Dianne I am on Xeloda for Bowel Cancer. I have only had 4 cycles, but had about 6 cycles last year between chemo and surgery. The only side affects I had were sore feet and very sensitive hands. This happened over time. So I am up to cycle 4 now and only just starting to see signs of it now. moisturising hands and feet daily even on days off the xeloda should help to reduce these side affects. I too feel like I'm not on chemo! Although I do go in once every 3 weeks to have an avastin infusion, so that sort of feels like it, but no vomiting.....its nice! I feel like the xeloda is just like taking lollies compared to IV chemo, but my onc too assures me its doing something! Cheers Michele 🙂 ... View more

Hi Deb, I too didn't have an "ostomy" of any sort but my bowels were all over the shop too during the treatments. Be sure to mention it to your onc next time you see him/her. In our house we call ourselves "Poo-ologists" 🙂 No cringes here when it comes to poo talk!!! 🙂 Hope you are feeling well. Michele ... View more

Hi Jo, I haven't been on here for a long time. Haven't read your profile yet but just wanted to know how u got on with centrelink? I was diagnosed with terminal bowel ca in 2007 and like you was told I was ineligible for anything from centrelink as my husband was going to continue to work throughout my treatment. i was later told that with a terminal diagnosis you are entitled to a disability support pernsion and pension card. I think the income cut off may be about $65,000 but don't quote me on that. You as a carer of someone who is "terminal" are entitled to the carer allowence which is non-means tested. The carer pension is means tested. So for the 1st 12 months of my fight we got nothing, then a friend of mine pushed me to try again. I had palliative care help fill in forms. Because I was "terminal" they simply ticked terminal - 3 months to live and we have received it ever since. I mean really, who knows when you are terminal how long we have, anything could happen in the mean time. Who are centrelink to play God and say you are only terminal if the Doctor thinks you have 3 months to live. We hear so often of people being given a few weeks to live and going on to live for another 12 months. I was given 6 months to live and that was 29 months ago! I'm not lying to centrelink, the tumors in my lungs could kill me at any point, I could get a lung infection and drop dead.....who knows, not me and even my docs are suprised at how well I am, so if you aren't already getting some assistance, get pall care to help out if you have access to them! Cheers mihalo ... View more

Hi Bev, As you know I haven't been on the site really since it changed over, so I've just been sifting through posts and came across this one on your mum. I'm Sorry, but Are you Serious! They can't do anything for 3 months, that's disgusting. Did they say what the blockage was? Did they end up doing something sooner? How is she now? Cheers Mihalo ... View more

Hi Same, I too underwent treatment 2 years ago and the neuropathy got worse before it got better. I am back on treatment now (FLOFIRI) and I don't know if its because of treatment or simply coincidence, but the neuropathy is affecting my hands and feet again but in a deifferent way. I assume its just the permanent nerve damage. In my hands and arms (Up to the elbow) I get really bad pins and needles, especially when I sleep, my feet hurt to walk those 1st 10 steps when I get up in the morning too. Have you spoken to a naturopath? Often there may be a vitamin that can help with nerve repair. Also talk to your doc about a drug called Gabapentin (not sure of spelling but sounds something like gab-a-pen-tin.....I was offered this drug after nerve damage from my lung operation, it is quite expensive apparently, and may be a cheaper version on the market. Hope some of that helps. Aside from all that how are you doing? Cheers Mihalo ... View more

Just wanted to say what a great sister you are, as it must be very hard for you too. How is your sister doing? My friends mum was diagnosed with malignant melinoma 25 years ago that had metastasized. Basically she had it from her foot where the primary was and mets up her leg and all through the abdominal cavity, in liver, uterus and other places. She was given 6 months to live, had 5 kids and began a trial. That was 25 years ago, she has since even beaten Thyroid cancer too.....hang on to hope and good stories of survival like that. xxoo ... View more

Hi everyone, I don;t come on here very often, but just wanted to add a little here, might be a little opposing to what you have all said but at the same time I hear you and understand all you have said. If it were me Sir N N I would be getting more opinions. My experience with cancer, docs, hospitals and pal care etc so far have been nothing but outstanding. Who knows maybe its because I was a 29 year old mother of 3 diagnosed with terminal bowel ca and given 6-12 months to live, (that was 28 months ago) that has them treating me differently. I walked into the surgeons office to have my lung removed only to have him tell me he wasn't convinced it was the right thing to do as the pathology results of the lung tumors they had found were not consistant with lung ca but more like a ca from the abdo. So I told him to check my bowel. 3 days later i was in for a bronchoscopy, laproscopy and colonoscopy....which turned into a 4 hr colon resection. Not a pneumonectomy (Lung removal) This wouldn't have happened if I didn;t speak up and tell him what I thought was wrong with me. Next doc I saw was the radiotherapy onc. She referred me to pal care I told her no need they are for people who are dying and I'm not....she looked at me with those sad puppy dog eyes and said "honey you have terminal cancer and the only treatment we can do is to keep you comfortable til the end" I told her if she wasn't going to treat me outside the square and TRY HER BEST to get me into remission, I didn;t want her on my medical team......she was 8 months pregnant, looked at me with my 8 month old baby on my lap and she cried and said ok I'm on your team, lets do it 🙂 I then said that to every doc I saw.....my aim was to be the miracle case they all want and if they didn't think they could spare the time to look into alternatives and trials and extra treatments or surgeries that would keep me alive then I didn't want them on my team. After all its my life they have in their hands, why shouldn't I pick and choose whose hands they are to save me. My baby is now 3 and my eldest is 8. Pal care check in on me every 2 weeks via phone and pop out if I feel like a chat with them. They have been great in suggesting good antinausea drugs and other stuff I can ask them over the phone, don;t write them off, as far as I'm concerned they are there if I need them, but ultimately i am hoping one day they will be able to discharge me from their books 🙂 I'm still on treatment now, but doing well. Sir N N I hope ur mum is doing ok and u r spending good times with her, and still looking for a good surgeon. Cheers Mihalo ... View more

Hey dunedigger, I had 5 months of oxali and 5fu and don't have any side affects, finished 12 months ago. My neuropathy is all gone.....I guess we'll see about thatwhen winter comes along, but so far so good. Whatside effects are you having from Avastin? And how are you???? Is it working etc? Love to hear more about the Avastin. I haven't had any since last year. I was on a trial using either avastin or AZD2171 now known as recentin which works basically the same as avastin but is tablet form, in conjunction with the folfox chemo. Thanks Michele ... View more

Hi Molly, And others. I spoke to my pharmacist and he said its not on PBS yet so is still costing almost$19,000 for 9 treatments, I'll keep you posted if I hear more. Oh if you can claim back on tax it brings it back to about $15,500....still too expansive! Cheers michele ... View more