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Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

CA19-9 importance?

Postby Michaela1 » Thu Oct 04, 2018 8:10 am

Hi guys,
I was wondering if anyone can alleviate my fears over my rising marker scores from blood test?
Basically at the beginning of treatment they were 1000 and something, after treatment one in went up to 2000 and summat, then 3000 and now previous to my 4th treatment it was 5050.
The really heart breaking thing was whilst I had to be an inpatient for 3 weeks (escaped a week ago), my cancer specialist right hand woman told me my marker had gone done to 27, which was fantastic news and my wife and I cried with relief and joy. So to be told yesterday that that result was a mistake was gut wrenching!😔😕😦. I saw the printout for myself so it wasn't a consultant read mistake, but something has gone wrong in the path lab! They are going to re run my previous bloods for Tuesday, and are going to see what has gone wrong.
But primarily my question to all who can help is what does this all mean, is my cancer getting bigger, is my treatment not working?
Many thanks if you are able to help.
Michaela.

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: CA19-9 importance?

Postby Dandygal76 » Thu Oct 04, 2018 8:44 am

Michaela - I would phone the nurses. Sorry to have a negative opinion and there are benign reasons you can get rising markers like this but in my experience, in pretty much every case I have known, it is because the cancer is growing. I made this mistake with dad but I am not just going by that - I researched a lot and they always showed the same thing. Call the nurses though because they will be the ones in the real know.

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: CA19-9 importance?

Postby toodotty » Thu Oct 04, 2018 11:11 am

Hi Michaela1,
Firstly the CA 19-9 marker is only about 90% accurate and should not be read in isolation. I had no CA 19-9 markers at all at the start of my treatment, another reason PC was not diagnosed, but mine did rise during the course of treatment, this seems to be fairly normal I think. Don't forget that the chemo will not stop the cancer on day one of treatment, it will probably slow it down and then eventually stop it. This has been my experience, one of my symptoms was a digital pulse at the bottom of my ribcage which was so prevalent that it would make my abdomen pulsate the whole time. Immediately after Round 1 of Folfirnox the pulse disappeared for 4 days and then started creeping back by Round 2. After each round it was taking longer for the pulse to re-start and then by Round 4 it disappeared for good. This I took as a good sign. I know you are having a hard time of it, but try to keep positive. If the Oncologists didn't think Folfirnox was working then they would look at an alternative treatment.

toodotty

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: CA19-9 importance?

Postby Michaela1 » Thu Oct 04, 2018 12:31 pm

Hi Danny and toodotty,
I think they are going to make a appointment with my oncologist regarding the results as I'd seen him when I was an inpatient for 3 weeks, and he said we'd see how it went next time. So maybe they will have to change it!
It is so hard to know if it is growing just by how you feel. How do I check if I have a digital pulse Toodotty? When did your ca19 go down Toodotty?
Dandygirl I will definitely ring the nurses now.
Thanks guys for your words of advice.x
Michaela

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: CA19-9 importance?

Postby toodotty » Thu Oct 04, 2018 5:41 pm

Hi Michaela1,
A digital pulse (sorry this is a horsey term which is a sign of infection!), is basically a pulse where you wouldn't expect to have one. In my case it was visible in that my stomach was pulsating, like there was an alien living in it. My PDAC is in the head of the pancreas so I guess it was this, it also meant that I was unable to sit down at all for about 3 months due to the pain.
My CA 19-9 marker is currently 5, but this is the lowest score my Oncologist has ever seen anybody have and as I previously said it was showing zero before I was diagnosed even though I did have PC. But yes I think it would be sensible for you to speak to your Oncologist about your concerns.

toodotty