High CEA level

Hi Nettie123

If I am reading this correctly you are still on active treatment. Whilst it gives you such a fright some people get a bit of a CEA rise due to the actual chemotherapy . Despite a spread my mum’s CEA was actually only 7. Something at diagnosis. However after a couple of cycles of chemo it popped up to over 11 . Worried sick does not cover it . Spoke to the oncologist who said it can rise in some people during chemo . Just a small rise in the grand scheme of things . Sure enough once it stopped it dropped back down and the scans showed significant shrinkage . The second year of chemo the exact same thing happened.

Additionally inflammation /infection etc can cause it to rise . Two years in a row my mum’s popped up and we thought the worst only . Scanned again and all was clear . A couple of months later it came back down . It’s not used to diagnose bowel cancer as there are too many other false positives that affect it .

They always waited a wee while and did another test with my mum . Give you time for chemo to leave your system . I always found oncologist did not over react to small rises . Different if it kept going up or shot right up .

Hope that gives you some encouragement.

How are you getting on ? Hope you have managed well .

Court 

Hi Cout

Thank you so much for always being there with a swift response! What you said was reassuring.

Yesterday, had another phone call, from my Macmillan nurse. She said my oncologist was not over worried, but as CEA was over 6 he would book a PET Scan. I expected to wait a while, but was phoned yesterday afternoon and had a PET Scan today. NHS deserves so much praise for that amazing service!

Have a wonderful Christmas and your Mum too.

And to you and your family. I doubt the private sector could get you in as fast and hopefully that will give you peace of mind . You have a great team there .

Court 

Hi Nettie 123 how are you I'm sure the levels will come down my levels have come down still a little more to come down we're did you have your cancer I lost weight  just under 8 stone are you still walking aboat I try and get a couple of walks in depending on the weather

Hi Winst8

Thank you for your message. My cancer was rectosigmoid, had spread to 7 out of 20 lymph nodes, hence had Folfox Chemo, for four months. Then recommended to have 3 cycles of Capecitabine. One more to go in the new year.

I too, lost weight. Was 7 stone 3. Now back to around 8 stone.  I do an early morning work out most days. Ony 15 minutes, 8 minutes to music, the rest just exercise and balance.  Keeps my husband entertained!!  Also walk/run with my labrador most days. She has two a day. I do one of them. Weather is horrid at the moment. Getting later with dog walks as 'waiting for it to brighten up'!  

Glad your CEA came down. Hope it continues to come back to normal.  Best wishes for your full recovery.

Nettie123

Thanks Nettie 123 I'm having my treetment Friday iv got terrible dioreah and cramp pain in my right abdomen iv noticed if I eat something different I pasta bake and I felt nauseous has well my GP won't proscribe me imodium only laxido

Hi Winst8

Hope the treatment goes well on Friday.   Sorry to hear about the diarreah and pain. It sounds really miserable. It's annoying having to be careful with what we eat. I'm finding I have to only eat a little fruit or veg each day, as the effects are not good otherwise!  I've had to buy imodium to have in, but haven't taken any yet. 

Best wishes for the new year. Here's hoping it will bring good things to you, especially good health. 

Best wishes

Nettie123

I'm quite disgusted that your Dr's won't prescribe immodium for you, I guess I was lucky and was given it routinely whilst going through Chemo. I really would insist on having it prescribed, why should you have to pay for it when you get your other meds for free...

Hi theyv proscribed it to me now after my family was going to put a complaint in I thought laxido would make things worse