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Frantic - need support/advice

Posts: 100
Joined: Mar 2004

My dad was diagnosed in 5/02 with stage IV colon cancer. We have had severl surgeries and ablations. Until Sept. 06, his cea level never went above 17. Out of no where, it went from 3.9 to 55.1 in one month. Pet scan showed multiple spots (not very sure about this - conflicting opinion between onc and radilogist if all were necessarily cancer). Took a month to start treatment - to get an appointment. Former surgeon at Johns Hopkins recommended Folfox with Avastin. At the end of October, cea jumped to 186. We have never been here before, very nervous and upset!! As of today (after four weeks of treatment), his cea is 180. Oncologist seems encouraged by this but I am not. I feel that if the treatment was really working, the number would be much less. Is this the beginning of the end? I was hoping that this treatment would do wonders and kill most of the cancer and give him another opportunity for ablation or resection of the liver. As of our last pet scan, the cancer was only in the liver. The colon lite up; however, he had a colonoscopy and it was clean. Should we try another treatment. The surgeon/oncologist at Johns Hopkins wants my dad to do this treatment for two months and then have another pet scan. Well, I am afraid to think what that might look like with a 180 cea level. The cancer has probably gone to his lungs. Any stories of encouragement would be greatly appreciated. Thanks so much.

chynabear's picture
Posts: 483
Joined: Jul 2005

I have heard that the CEA levels can jump greatly during treatments. I don't know if it is in relation to any coctail or certain drugs. Maybe you could ask the onc. I know this isn't much help, but my thoughts and prayers are with you and your family during this very scary time.



Posts: 105
Joined: Nov 2006

dear frantic,

i am a stage 4 rectal cancer survivor, i had 15 nodules in each lung and 2 spots on my liver, i did do the folfox with avastin,also had the 5fu and leukovorin, my cea always continued to drop with each lab draw after so many treatments of chemo. however there were times where i was at a stand still with my cea numbers not moving. as you know, cea levels can increase for thousands of different reasons, does not have to be cancer. please sit back and take a breather, if you trust your doctor, continue to follow treatment as he as reccomended. but if your instinct tells you to seek second opinions them please do that. I would like you to know that i am in full remission since march from these treatments. keep your head up, i will pray for you and your father, god bless you


KathiM's picture
Posts: 8077
Joined: Aug 2005

Oh, dearheart...I cannot speak to CEA....mine was .5 in the midst of stage III rectal...not a good indicator.

I AM sending strong, healthy vibes...sigh....sometimes I feel sooo powerless!!!

Hugs, Kathi

Posts: 168
Joined: Feb 2005

ALWAYS get a 2nd opinion especially if you are having doubts about what you hear the first time.

Posts: 106
Joined: Nov 2004

Sorry I have not gotten back to you. I have been literally flat on my back with compression fractures and out of work. My Cea level has always been 0.5 since the colon surgery in 2003. The Drs. never did a base line CEA level before the surgery
for colon cancer. How ever the CA19.9 one for the pancreas keeps on climbing as well as the pancreatic enzymes. I had a petscan in July 2006 where they found no mass. I also had MRI's And MRCP's of the bile ducts which were negative. My increased in levels is still undetermined. They all went back to normal and now starting climbing again. There are always conflicting stories between all these DRs. Sometimes these lab. tests could some what be conflicting. Maybe the new chemo is affecting the CEA. Hang in there. I hear your grief with getting appts. and getting things started and communication between DRs. Your friend

Posts: 1
Joined: Dec 2006

I'm 39 nine with stage four colon cancer with met.to liver. I'm in my ninth treatment of the same chemo your dad is taking. After my fifth treatment my pet scan came back clear in the colon. After my seventh treatment the tumor were gone from liver. I had three. I am in remission now and tomorrow I will have my ninth treatment. Three more to go. !!!!! My CEA goes all over the place too. I've been hearing so many positive stories of surviving the ordeal. I know people with stage four that have survived !!!! One women I knoe has been in remission for seven years, one five AND MANY MORE. kEEP THE FAITH !!!!! wE ARE LIVING WITH THIS,NOT DIEING FROM IT !!!!!!!!!!

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