Topic: new to this site....please help...

_Hi everyone...my dad was dx in 12/13/07,wipple done in 01/03/08,followed by 5 weeks of radiation and 5FU.he had a month break and than aftr his scan we found out that he had mets to his liver.they were sure about one 7mm,but there was this other lesion that they were not sure,but he started on GEMOX,had his 5th treatment today.he's doing good,gained all of his weight back,he's the same that he was when dx.but my biggest concern is that his CA19-9 keeps going up,it has never been this high not even when he was dx.i'm going crazy over this.when i look at him i can't believe he has this horrible disease.you can't tell he's sick when you look at him.i know that this chemo he's one is the strongest one ou there and if this isn't working waht else is left?i don't wanna think about it...he'll have scans on tuesday and i just can't stop thinking about the worst.I do bellieve in a god of miracles but at this point i'm just not sure if the miracle will happen to my dad.what if god wants to take him?i'm not ready for this.he's everything to me.i wanted to be in his place....i'm very glad that he's not in pain and i don't wanna see that happening.but anyway,does anybody have anything to tell me about the ca19-9 level going up?has anybody experienced that?
please help..i'll keep praying for all of us...

lilly

Re: new to this site....please help...

Hey Lilly...I know exactly how you feel...I'm so sorry for  the uncertainy and frustration this is causing you...my husband is going through the same thing you father is...minus the radiation at this point in treatment...whatever you do...don't give up...the miracle is having the wonderful father God gave you...the miracle is every day with him...the miracle is that you believe that God is in the business of miracles...and they certainly might not be the ones we want right now....but they are all around us every day...my dad died of throat cancer three years ago...we all prayed for miracle after miracle....but God was ready to have him at home with Him....of course, like you, we didn't want that...we wanted him here...the miracle of his death was that he was now in the arms of his Heavenly Father....and as a believer there is nothing more wonderful....and to know that one day I will be there with him too, is yet another miracle that happened a long, long time ago on the cross.  Hang in there...when your down and out and don't even have the energy to speak...quietly whisper a little prayer for hope and strength and you'll be surprised what a miracle that is!

Heather

Re: new to this site....please help...

hey Heather,thanks or the reply.I'm not giving up,and i do realize the miracle to have my dad around me.we are here now watching the celtics game,and i can't barely hear his voice.he's very weak today,just had his chemo treatment so he'll be down for 3 days or so....but i do pray everyday for him not to sufer and i do bknow that god will do the best for him even though it might not be what i want.but thanks again and I'll be praying for your familly as well,and I'm so sorry for the loss of your dad but we know that he's in a better place than us.God bless you and your husband...

Re: new to this site....please help...

Lilly
I dont know anything about CA199 levels. I am one of those whose head is firmly in the sand most of the time. Lalalalala is going on in my head when the doctor speaks. IT works for me.

Anyway,sorry about your dad. I hope they can figure out what is happening. Perhaps the CA19-9 elevation is a result of the stress from treatment. My liver tests (sorry dont know which one...lalalalalala) went up when I had "sludge" build up in the now narrower bile ducts. It could be something simple like that.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: new to this site....please help...

Hi Lilly,
     What number is his CA 19-9 at? My husband Butch was diagnosed in March of this year. His CA 19-9 was UNBELIEVABLY high. It was much higher when we got to the Mayo Clinic, again here before starting chemo. After the 1st round of treatments (xeloda and Gemzar (gemcitabine), his CA 19-9 has more than halved - but - it is still 19000! Is this Gemox you mentioned Gemzar, because we were told that gemzar was supposed to lower that CA 19-9 number, and it did for Butch. I did an enormous amount of reading on this tumor marker, and there are reports of patients who had abnormal numbers for other reasons - some had a benign tumor (we know my husband's tumor on his liver is malignant), some had a blockage in the bile ducts (people with primary schelrosing cholingitus are prone to this), and other reasons. What does his doctor say about this? How are the scans otherwise? We will all pray for you and your Dad,  and we will all keep the faith.

Joyce

Re: new to this site....please help...

Hi Lilly,

CA 19-9 is a common tumor marker for a number of people here.  However, other events other than tumor growth can cause a change in the number.  So I tend to look at the trend of the CA19-9 rather than the absolute number as an indicator.  Please try not to worry about a particular number.

I'm sure your dad appreciates you being there for him.  Your love for each other is the most important thing.

G

Re: new to this site....please help...

hi guys,thanks everyone for replying to me.i do look at the trades and that's what has been bothering me.when he was dx it was 536,than after the surgery came back to 32.during chemo/radiation was 78 and than went to 411 when we started chemo again and from there 978 and 1431 last time we checked it.i'm just very concerned but the dr said the it does go up  before it goes down but to me it's just way to high.he's getting scans again next tuesday.

Re: new to this site....please help...

This whole darn CA 19-9 thing just confounds me - a pox on it! I guess we just have to accept that , like everything else that goes with CC, it is a little different for each individual depending on the circumstances. Hopefully, you will feel better after your Dad gets the results from the scans - it is the waiting that is the worst, so I've found.

Joyce