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it is what it is, cea trending down, large increase ca199

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

http://petertrayhurn.blogspot.de/2013/03/possibly-challenging-result-cea-64-down.html

this result was on the tail end of removab course 2 dose 3. which is the final one. i did have some fever and flu symptoms and bowel upset.

playing straight friends like its been the last 2 1/2 years.

got to love the challenges of this illness.

this result could still actually be really good news, time will tell, have not chatted with doctors yet. just got the result by email.

just an update, getting this off my chest, its processed, as far as i am concerned its now ancient history.

could life get any more uncertain or exciting.

who wants a boring existence anyway ? not me . anyway i don't have a choice in that anyway.

stay positive for me, i am.

hugs,

pete

 

Chelsea71
Posts: 1170
Joined: Sep 2012

I really admire your attitude. If only it could be bottled and dispensed to others, like myself. I recently asked Steve, "What the he'll did we do with ourselves before the cancer set in. Where was our focus? What did we do with our time?". It's all become about keeping him on this side of the grass. Good luck!

Chelsea

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I wonder how much the removab's tumor killing effect may be having on these numbers. Maybe you just need to wait a bit and see how the numbers sort out. 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

thats my prayer. we got to have some fun with all this. the medical certainty so comforting. ( not, I am being ironic )

hugs,

pete

John23
Posts: 1832
Joined: Jan 2007

Don’t write it off just yet, Pete!!

 

Good things can take time!

 

To tell you the truth, Pete…..I’m worried more about those (like Tedd), that might have been convinced that it’s a great idea to sell off the life insurance policy and/or mortgage a home, to pay for the treatments that sounded so worthwhile.

 

Well….. maybe we’ll find out that it is indeed worth every penny borrowed or saved, and you’ll have saved a couple of souls hoping for a longer life.

 

I hope so! I’d like to see –you- around for longer than I figure I’ll be around.

 

I’m wishing you the best, my friend, “keep your eye on the prize”!

 

John

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

not throwing the baby out with the bath water just yet.

but john i know the hope my result may engender, i am trying to at least play it honest.

i could have sat on the results till tuesday and the next set of results.

my gut just said spend 30 minutes, document it, get it accurately off my chest with my thoughts.

putting my initial impressions in black and white helpful.

its too hard for me to tell at this point, so its just be cool and enjoy life, and play the treatments step by step.

re others hopes, depending on a range of factors they may do better, the same or worse than me. 

so glad i jumped on the plane january and am here doing the best i can, and annoying the doctors in my way.

if its post removab the ca199 will settle sooner or later, if its a met, its possible it will keep on climbing.

still a few alternative and conventional offerings up the sleeve. but tonight i'll try prayer.

the prompt relaying of the result was mainly for ted and ren. maybe the ca199 sky rockets with removab, from my reading thats possible.

hugs,

pete

 

 

John23
Posts: 1832
Joined: Jan 2007

 

Re:

maybe the ca199 sky rockets with removab

 

I know that the CEA can rise with the death of a large tumor, so you may be on the right track, thinking that the “CA199” might have the same reaction to the death of a lot of cancer cells.

 

You’ll know soon enough, so don’t waste time worrying. You made it this far Pete, and you’re doing OK, right? That’s more than most with the prognosis you were given! We just have to keep our eyes on the horizon!

 

Be well,

 

John

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I'm hanging in there and reading all of Pete's posts. I haven't committed the money yet so don't worry about that but just the fact that they got rid of the tumors (per ct and pet scans) is enough to convince me it is probably worthwhile and my onc agrees. We discussed it and she felt significant tumor reduction would be very beneficial to me even without getting to ned status. Honestly I'm not convinced that hallwang can cure us but I'll settle for life extension if possible. I do have a limit to how much I will spend chasing more time and the advanced insurance payout is that limit. My wife will still get 3/4 of the policy if I die so I'm not spending all of it. I also have a separate policy through my work that is worth more money that will not be touched. I want to live as long as possible but I won't sacrifice my family's financial future to do it. 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

you, me and ren can go thirds. of course we each have to keep the dream alive. its possible.

heck we might even make a profit out of the illness, now that would be cool.

hugs,

pete

tanstaafl's picture
tanstaafl
Posts: 963
Joined: Oct 2010

CA19-9 can be hugely affected by inflammation.   I would consider CA19-9 values away from -ab, other treatments and illness as most useful.  I use ESR as our inflammation guage along with liver values for reference.   A steady data collection is important to monitoring.

Last time for us two years ago, it was easy to reverse the CA19-9 climb with enhanced chemo, but elevated CEA only stayed level until surgical removal.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

as in steady eddie ,

cool as a cucumber in a frying pan, thats me.

hugs,

Pete

ps we got to really understand these markers way better than our onc's, even the hallwang doctors have given up controlling me, i pay for the tests, i order what i what.

i will what labs do what and where in germany for how much. if these therapies really help others, we will all know the results. and our dear conventional onc's will be waiting for the next drug based trial, while we will have real results. sorry but screwwwww waiting. have you got time too ? i sure as hell don't. i say push the system and your doctors as hard and firmly as possible. but its your life, you do your thing. i am doing mine. that said i will help anyone on this path, if its close to mine.

annalexandria's picture
annalexandria
Posts: 2222
Joined: Oct 2011

my vote is for a flare, indicating that those bad little SOBs are dying off.  When do they scan you again?   AA

But I have edited to add, after reading your blog just now, that I don't think it's totally cool to be criticising your "friends" here at CSN both at your blog and on the other colon cancer forum.  I feel when someone writes a post here at CSN they should be able to expect that the rest of us won't go off and link to it and criticise it elsewhere on the Net.  I do realize that once we put stuff online, there's no guarantee of privacy whatsoever, but I would hope that all of us here on CSN would be more respectful of each other.  We shouldn't be using what folks share here as fodder for our personal blogs (and not in a kind way, either).  Disappointing. 

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