Make the days count....

[agnesslouise]

I've had a tough day as started my second line chemo today. I'm back on same carbo/taxol and have felt low all day. First time I was so buoyant & went through everything with ease. I was on a mission to prove I would be cured, my oncologist always said long term control but I didn't want that! He has been so pleased with me & I was given NED March '16. Report said complete response to therapy & told it was excellent. I continued on Avastin but in mid Oct'16 CA125 started to rise. It was 37 on 5th Sept which was actually my birthday! On 2nd Nov 190, I don't know what it is now. Recent CT scan is still NED but oncologist wanted to start chemo again. I feel low as with what appeared to be excellent results my remission has been so short at 7 months and just keep thinking how & why did that happen. I did worry so much about it coming back but expected at least 2 years. I agree that we must all make the days count & enjoy our remissions to the full. I do try to be upbeat & positive but it is all so hard & as you start to understand this disease you realise how awful and totally unpredictable it is xxx

[Lily-Anne]

I'm surprised that they suggested chemo with a clear ct scan. The CA125 rises with inflammation in the abdomen it could be linked to lots of things like bowel or stomach. A per CT will give a better indication and I would push for that before taking more chemo

LA xx

[Choski in reply to Lily-Anne]

Lily-Anne ....what's a per CT scan?

Clare xx

[Daniellafriman in reply to Choski]

Maybe she means pet ct.just a typo. I do not know. I only know pet scan 😁

[Lily-Anne in reply to Choski]

Pet CT oops

[Choski in reply to Lily-Anne]

😀 I thought it might be a pet but didn't want to assume! These days I don't !

[Choski]

So sorry that you feel so low, that's such a hard place to be.

As Lily-Anne mentioned below re your CT scan being clear - did you have any other symptoms apart from raised CLA? I understand that if 125 is raised with no other signs or symptoms that it's normally a watch and wait approach. Did your Onc say why he/she wanted you to start chemo again? It's worth asking.

Take care and a big virtual hug for you

Clare xx

[agnesslouise]

Yes just on raised ca125 but my trend has always been very accurate. I have no symptoms. I did ask if another type of scan could determine more about where the microscopic cells could be but he said no. I asked him for the best treatment for me. Next time I saw him he recommended carbo/taxol again & said he'd changed his mind about a break. So here I am, 1 down & 5 to go. Feeling much brighter today as steroids kicked in xxx

[Diane1947]

I love reading the comments. Thank you for your encouraging words of wisdom. I am somew new to this, but I am enjoying the open and honest dialog here.

[Chamber]

Best of luck with your treatment

Judy xx