Hi - new to site, recently diagnosed Stage IV bowel cancer

[Cazza]

Hi I am on 5FU with Avastin so 48 hour infusion at home. I have had 10 sessions now with starting CEA of 250 but down to 6.6 today. I have had few blips along the way - due to have chemo today but neutrophils/white blood cell count too low so delayed for a week. They will not operate on the colon while the liver is unresectable and I have been told this week that I will never be a candidate for resection because of the location of the mets and other issues with the liver. So for me it will be 2 more treatements of 5FU then move to maintenance chemo - tablet form for 3 weeks and on 4th week Avastin to keep the CEA level low and maintain the tumours at their current size. I wish you good luck and that you prove the surgeons wrong - I myself am working on that!

[Son1807]

Hi Cazza I'm sorry to hear that you are not a candidate for resection. But things change all the time, new treatments and drugs are being discovered, and you never know what tomorrow will bring. Try to stay positive, I know that's hard, and sometimes gives you the shits when people tell you that, sorry! Is radiation an option for you? I have heard of SIRT (I think that's what they call it) it's like radiation, but if you have it, you can't be ressected later, unfortunately. Keep us posted on your progress with the maintenance chemo drugs, please. Sonya

[Aqua51]

Hello All...I'm sorry I haven't been here for a while but I'm so so sorry and sad to say my daughter Tracey lost her battle with that horrible horrible "C" disease 4 weeks ago on 20th. July. Tracey fought so hard to beat it, we are all so proud of her..thankyou all for your support! xoxo

[Cazza]

Hi Thanks for your message and apologies I have not responded sooner. am glad to hear you are doing well. Yes as you say we are all different and I am so grateful for each day. Having been initially given less than 3 months,8 months on I am still her and have just returned to work having moved to maintenance chemo. My CEA was 250 when I started this journey and at last test 3 weeks ago was 3.3. All tumours have shrunk significantly. So here's to continuing to fight tis disease and hanging in there until a cure is found which I am sure is not that far away with the new stem cell treatments around. Take care.

[Cazza]

Hi Thanks for your message and apologies I have not responded sooner. am glad to hear you are doing well. Yes as you say we are all different and I am so grateful for each day. Having been initially given less than 3 months,8 months on I am still her and have just returned to work having moved to maintenance chemo. My CEA was 250 when I started this journey and at last test 3 weeks ago was 3.3. All tumours have shrunk significantly. So here's to continuing to fight tis disease and hanging in there until a cure is found which I am sure is not that far away with the new stem cell treatments around. Take care.

[Cazza]

Hi Thanks for your message and apologies I have not responded sooner. am glad to hear you are doing well. Yes as you say we are all different and I am so grateful for each day. Having been initially given less than 3 months,8 months on I am still her and have just returned to work having moved to maintenance chemo. My CEA was 250 when I started this journey and at last test 3 weeks ago was 3.3. All tumours have shrunk significantly. So here's to continuing to fight tis disease and hanging in there until a cure is found which I am sure is not that far away with the new stem cell treatments around. Take care.

[Cazza]

Dear Pam I am so sorry to hear about the loss of your beloved Tracey. This is an awful disease and no one on the journey knows where it will lead. My thoughts and prayers are with you and your family. Carole

[round2]

Carole I seem to be on the same treatment with the avastin and 5FU bottle attached at home for 46 hours. I have a bag with a long drawstring and I push that up my arm and then secure it with a flexible tube bandage. I take that off at night though and just lay the bottle next to me at night. I have read on other replies about noise, mine doesn't make any noise. It's only my first treatment like this, since they found new spots on my lungs. I've completed bowel resection, radiotherapy and 5 rounds of chemo last year and was supposed to be in remission but they found the spots on my lungs at my first 3 monthly check up. I have also been told they can't operate because there are too many scattered across both lungs(6), so there is no cure. I have been told they can go through treatment, or they can remain there inactive. Luckily nothing shown up in lymph nodes, the original location or any other major organs. I was pretty shell shocked last week so I didn't ask many more questions and just wanted to get it started. So far it doesn't seem as bad as I expected. A bit of mild nausea, I have been told the drinking/eating cold anything cold is 48-72 hours but I have the sensitivity to touch cold items and I'm not sure how long that is going to last. I got some gloves organised just in case. 4 hours until disconnect, looking forward to it! Take care Carole and keep fighting, there are lots of people working on solutions and we just have to keep as healthy as possible until they can bring us through this horrible journey. Kim

[Son1807]

Hi, Just wondering if anyone has had cetuximab as part of their treatment. I have it with Folfiri. I was getting the cetuximab weekly, but now cutting it back to fortnightly, in an attempt to settle my skin rash. Has anyone got/had the rash? I have had a bad case of it ie thru my hair which fell out because of all the creams and lotions I had to put on my head. The dermatologists at Westmead hospital all came and had a look at it with their notebooks at the ready. I have it on my chest and back too and now it's flared up on my neck. For those of you wondering what the rash is, think pimply teenager and times it by ten!! I am embarrassed to go out, and spend a lot of time at home (i don't work) feeling isolated and depressed. I know I shouldn't complain as there are people worse off than me. Has anyone had it and can give some hope of it clearing or settling down? I was told it would settle after 2 weeks, then after 6-7 weeks. It has been about 9 weeks and I'm still waiting.

[DG]

No sorry it doesnt sound like the treatment i am on, I havent had a rash so far I have had 8 cycles so far and ive just had another scan, i go back for the results and possibly more chemo in the morning, I understand how u feel regarding the isolation and depression, try not to let it get a hold of u though, u need to hold a positive mind! believe me it will help, though i fully understand how difficult that can be, as i said i havent had that side effect myself ...yet but because chemo is culmative I wouldnt say i have escaped that part yet i think i still have 4 cycles to go 😞