CA 19 #'s going up after Folfirinox

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CA 19 #'s going up after Folfirinox

by cynto9 on Thu Jul 17, 2014 08:43 PM

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Hi all,  This is my first time writing in a blog but I was hoping to find some hope here. My husband was diagnosed with a rare form of pancreatic cancer stage 4 (mets to liver). We went to MD Anderson and he was put on folfirinox which our local oncologist here in Fl ia able to give him. He has only had 3 rounds of it but his ca19 are going up instead of down. My question is has anyone had this experience of it taking more then 3 rounds of chemo to start seeing results? And has anyone ever switched to Gem/Abraxane from folfirinox and had good results. Thank you so much for taking the time to read this and respond.  Cindy

RE: CA 19 #'s going up after Folfirinox

by bushy on Fri Jul 18, 2014 01:11 AM

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I have a friend who was on folfirinox for just over 12 months it did take a while before Ca19.9 moved, at this time her markers have gone back up and pain has developed in her back from tumors she is looking at radiation and 5fu.

Abraxane/Gemzar does have promising results, that will be the chemo my friend goes on, if and when her current regime does not help, but every person responds differently to Chemo,there are some inspiring stories on here with lots of information and support best wishes

bushy

RE: CA 19 #'s going up after Folfirinox

by Apryl773 on Thu Jul 24, 2014 03:01 AM

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First I want to say that I am sorry to hear of your husband's diagnosis. My mother was just a recently diagnosed with a rare form as well. Adenosquamous Carcinoma. She is also stage 4 with mets to the liver. We went to Moffit Center in Tampa and they put her on Gemxar/Abraxane which she receives from a local oncologist here in town. She is three weeks on and one off. She just started her second round today and her CA-19 numbers have already gone down. I know everyone is different, but you may want to ask his doctor about that treatment. Maybe Folfirinox takes a little longer? I don't know anything about it. Keeping you both in my thoughts. All I can say, is advocate for yourselves and DO NOT GIVE UP HOPE! April

RE: CA 19 #'s going up after Folfirinox

by Shasta38 on Thu Jul 24, 2014 03:35 AM

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My husbands ca 19 -9 has gone from 5550 to 9110 in 4 weeks before starting chemo. He is only 56 and was going to be put on folfurinox by md Anderson and moffit but we chose Space Coast Cancer Center. They suggested Folfox to start! He just went thru his first session of chemo of folfox which is leucovorin, fluorouracil (f-5u) and oxaliplatin. Only missing for folfurinox is irinotecan. We will see if his ca 19 9 has moved in the right direction next week. . We were told folfurinox will make him very sick! It's only been 10 days since first treatment but his pain is gone in his stomach. Also trying alternatives like CBD oil, apple seeds (vit b-17) ) and turmeric pills. Just wondering. How did she do on folfurinox? My husband threw up for 3 days ---no diarrhea and was back to normal after 5 days. I am worried about not using the folfurinox. I hear great results from it! Sometimes it's better to get a Cat Scan then check the numbers! Three labs had ranges of 3000 points different from another!!!! Good luck and prayers to your family!

RE: CA 19 #'s going up after Folfirinox

by Apryl773 on Thu Jul 24, 2014 05:08 AM

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I honestly do not know my mother's CA-19 numbers. She just told me today that they went down by half after only three treatments. I can ask her tomorrow what they were and are now. I have done some research since reading your post. Folfinox (spelling?) does seem to take longer to show results. I also read that CA-19 numbers don't really say too much. The CAT scan is more important. I don't know. I'm new to this just as you are My hopes were high that her numbers went down. I almost think that too much research is bad. All I know it this....her numbers were on the thousands and now they are cut in half. She is not in any pain, and she has yet to lose her hair (although it is slowly falling out). She is strong, and still full of life. Oh...she was diagnosed June 20, 2014. So it is still new to all of us. She is also young like your husband. Only 60 years old. Never smoked, hardly drinks, no drug use ever, and no history of the disease. So "shock" is an understatement. As we are so new to this, I really don't have any advice except to repeat what I wrote earlier and advocate for yourselves. And there is hope in everything. My mother is truly my best friend. To imagine a life without her is incomprehensible. As I am sure you completely understand. I don't know how to "friend" anyone on here. But if you need to talk Love, Peace, & Strength. April

RE: CA 19 #'s going up after Folfirinox

by Shasta38 on Thu Jul 24, 2014 06:26 AM

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Just curious. What kind of symptoms or affects did your mom get from folfurinox??

RE: CA 19 #'s going up after Folfirinox

by cynto9 on Thu Jul 24, 2014 09:26 AM

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On Jul 17, 2014 8:43 PM cynto9 wrote:

Hi all,  This is my first time writing in a blog but I was hoping to find some hope here. My husband was diagnosed with a rare form of pancreatic cancer stage 4 (mets to liver). We went to MD Anderson and he was put on folfirinox which our local oncologist here in Fl ia able to give him. He has only had 3 rounds of it but his ca19 are going up instead of down. My question is has anyone had this experience of it taking more then 3 rounds of chemo to start seeing results? And has anyone ever switched to Gem/Abraxane from folfirinox and had good results. Thank you so much for taking the time to read this and respond.  Cindy

Thank you to everyone that has replied to my original message. My husband has had 4 full rounds of the folfirinox now but his CA 19 markers have not been checked again (they were checked after the 3rd). We will be going back to MD Anderson the beginning of Aug for scans and to see the doctor. I would doubt they would keep him on the chemo (unless it showed great tumor shrinkage) because his side effects are bad for him. He barely will have 2 days of feeling better before he is due again for the chemo. The bad days out way any good days by far. Prayers to all and thank you Cindy

RE: CA 19 #'s going up after Folfirinox

by dhdebbie on Thu Jul 24, 2014 02:05 PM

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My husband had two months of Folfirinox (every other week) and did not get good results at all.  In fact, during the chemo, his tumor grew and he developed lesions on his liver.  He is now on Gemzar/Abraxane and is scheduled to be re-staged with PET scan and CT scan in two weeks. He has had three cycles of this chemo (three treatments weekly and then a week off = one cycle).  Good luck and know that there are alot of people here to support you and share experiences.  - Debbie

RE: CA 19 #'s going up after Folfirinox

by meah1 on Thu Jul 24, 2014 02:19 PM

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My husband had 3 months of folfirinox. 3 weeks on 1 week off x3.  His cancer liked it and grew while he was on it. The side effects were brutal.  Then they switched him to gemzar/abraxine. 3 months of that shrunk the tumor back to where it started. With brutal side effects.

RE: CA 19 #'s going up after Folfirinox

by cynto9 on Thu Jul 24, 2014 03:17 PM

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Hi ..Thank you for your response. Were the side effects as brutal with the gemzar/abraxine vs the Folfirinox?  Thank you

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