NEW TO THE BOARD FOLFIRINOX???

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RE: NEW TO THE BOARD FOLFIRINOX???

by Kjohnchas on Tue Mar 18, 2014 05:02 PM

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Debbie,when they first found tumor in my husband,they had put in a stent,a wire mesh one,at that time he couldn't eat ,he has never had any problem with it. This was inserted down with scope through his throat,it is a in out thing prob have to spend the night. Be sure to ask if stent is plastic or metal,as I have heard a metal one cannot come out. My husband can't have surgery anyway but they say impossible with this stent,but ask cause not sure. Our dr has never checked his CA19-9, said it wasn't reliable,he has a pet scan every 3 months. Best of luck let me know if you have any questions,best to you Kathy There is no pain with this procedure

RE: NEW TO THE BOARD FOLFIRINOX???

by kat228 on Wed Mar 19, 2014 02:05 PM

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On Mar 18, 2014 4:41 PM dhdebbie wrote:

Today we found out that he needs to have a sent put in his bile duct.  Last week's bloodwork indicated that his liver enzymes are higher than they were and they don't want to wait until he becomes jaundiced.  He is not happy about needing this because he has this done on Monday and his next chemo on Wednesday.  He did have a CT scan this past Friday, but we don't know the results of this new scan yet.  Hoping that things have not changed and the situation is not worse than it was initially.  We are both so nervous of having the type of cancer that is so aggressive that nothing helps.  As I said, we were told his cancer was operable; that the tumor was 1 cm on the head of his pancreas and his MRCP and biopsy did not indicate that it had spread anywhere else.  The doctors recommended two months of chemo before they attempted to do surgery.  His CA19-9 was 1092.  I understand that this number varies from person to person.  Can someone explain this to me?  Thanks.

Hi, The Ca 19-9 normal range is 0-37.  Your husband's cancer sounds like it can be cured with the Folfirinox. My husband had stage 4 pancreatic cancer one year ago today when he started chemo. He now has no signs of cancer on both the CT and PET scans. His Ca 19-9 originally was 5400 and now it is 29. Hang in there. Keep fighting. Be positive. Continue the chemo. It works. Best wishes for you and your husband.

RE: NEW TO THE BOARD FOLFIRINOX???

by champagnejoey on Sun Apr 06, 2014 01:00 PM

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On Mar 16, 2014 9:59 PM TOMA76 wrote:

Hello Everyone,

                               Wanted to give everyone an update on how I am doing. Just finished my 10th round of Folfirinox on Thursday. My Ca 919 is now down to 630. Other than the fatigue and all the other nasty side effects I am living as normal as possible. Hoping everyone is doing well and fighting the fight.

Great to hear that.  My dad age 55 just completed the 9th cycle.  Its some toughh stuff.  I wish you the best.  Keep fighting.

RE: NEW TO THE BOARD FOLFIRINOX???

by loveformom on Sat Apr 12, 2014 06:16 PM

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Who is your oncologist ? ,y mom seeming someone from penn but I don't think he is that good , please help me to save her life by share your information .. Thank you....

RE: NEW TO THE BOARD FOLFIRINOX???

by TOMA76 on Sun Apr 13, 2014 12:00 AM

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Dr. Stephanie Wagner. She is at the Bren Simon Cancer Center at IU in Indianapolis Indiana. She specializes in pancreatic and brain cancers. I would highly recommend her.

RE: NEW TO THE BOARD FOLFIRINOX???

by dhdebbie on Thu Apr 24, 2014 09:58 AM

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Well hubby had a CT scan done on Monday. Not good. After four treatments of folfirinox, the tumor actually grew and now there are little spots on his liver. Surgery is off the table and they tell us chemo will basically extend his life -- that it is not a cure. We are desperate, so we are going on Monday to CTCA in Philadelphia to get another opinion and see if they offer some type of treatment that Sloan did not offer us. Need support. I am feeling so alone and hopeless right now.

RE: NEW TO THE BOARD FOLFIRINOX???

by rnrblazer on Thu Apr 24, 2014 01:10 PM

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dhdebbie,

So sorry to hear of the ct results....  but good choice to visit CTCA .  While correct there is no cure currently for stage 4 pancreatic cancer, they do a wonderful job of caring for the quality of you and your husband's life.  My husband was dx stage 4 in August 2011-  (28 months) so he was inoperable from the beginning.  He will start his 5th line of chemo when we return from our break in May, he has had radiation and chemo embolization. Yes they are "extending" his life-  but he and I have been "living" for an additional 28 months so far, much longer than the 3-6 months he was given at the first oncologists office.  We have been so blessed to have found our team at ctca, praying you and your hubby find strength at this trying time.   

Blessings~ Rose 

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