Folfirinox failure

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Folfirinox failure

by nov94 on Tue Sep 22, 2015 07:55 PM

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Thankful to the forum as I have learnt so much.

Husband,  47, had four rounds if folfirinox. Bad pet, multiple peritoneum mets, possible incipient liver met, early ascites.

Probably awitching to gemzar/abraxane. Need hopw yet know everone's journey is so very different.

Suapected Brcaness maybe juat wrong guess.

RE: Folfirinox failure

by nov94 on Wed Sep 23, 2015 12:34 PM

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On sep 22, 2015 7:55 nov94 wrote:

Thankful to the forum as I have learnt so much.

Husband,  47, had four rounds if folfirinox. Bad pet, multiple peritoneum mets, possible incipient liver met, early ascites.

Probably awitching to gemzar/abraxane. Need hopw yet know everone's journey is so very different.

Suapected Brcaness maybe juat wrong guess.

Need hope here, please, oncologist just told us second line treatments have fewer chances

RE: Folfirinox failure

by loggie on Wed Sep 23, 2015 01:14 PM

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On Sep 23, 2015 12:34 PM nov94 wrote:

On sep 22, 2015 7:55 nov94 wrote:

Thankful to the forum as I have learnt so much.

Husband,  47, had four rounds if folfirinox. Bad pet, multiple peritoneum mets, possible incipient liver met, early ascites.

Probably awitching to gemzar/abraxane. Need hopw yet know everone's journey is so very different.

Suapected Brcaness maybe juat wrong guess.

Need hope here, please, oncologist just told us second line treatments have fewer chances

I did four rounds of FLORFINOX and it didn't do much. Everything remained stable, which isn't necessarily bad. CA-19-9 only came done a small amount. My oncologist had me switch to Gemzar/abraxane and I've done six infusions so far. After three infusions my CA-19-9 dropped from 221 to 101 which is great. I'm actually writing this at the airport as I'm traveling back to Mayo for scans. I'll let you know it turns out. I was really worried too as I had read that FLORFINOX was the gold standard, but my surgeon/oncologist said that was nonsense and he has had several cases where his patients respond to the Gemzar/abraxane combo better and I feel like I'm one of those based on how I feel plus the results of my CA-19-9 test mentioned earlier. I will let you how things go after my all my appointments are done on Thursday. In the meantime, let me know if you have any questions. I'll be flying a good part of the day so I won't much access to email. One last thing, I'm 47 also.

RE: Folfirinox failure

by Jess24lynn on Wed Sep 23, 2015 02:38 PM

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On Sep 22, 2015 7:55 PM nov94 wrote:

Thankful to the forum as I have learnt so much.

Husband,  47, had four rounds if folfirinox. Bad pet, multiple peritoneum mets, possible incipient liver met, early ascites.

Probably awitching to gemzar/abraxane. Need hopw yet know everone's journey is so very different.

Suapected Brcaness maybe juat wrong guess.

My mom was dianosed 18 months ago with stage 4 PC with mets to her lungs. She started out with folfirinox. She completed 2 rounds. Her scan showed growth in her lung nodules. Her CA19-9 also increased, reached an all time hight of 486. Her oncologist switched her to G&A. She tolerated this regimen much more. She also had an amazing response to it. Lung nodules shrunk with every scan, tumor in pancreas is down to 1cm by 1.2cm and is thought to be dead/dormant because it has not done anything in over a year. Her CA19-9 got all the way down to 15. She was on G&A for 8 months. She decided to take a break, was off chemo for almost 3 months until her lung nodules began growing again and her CA19-9 was increasing. She is now on high dose xeloda(1500mg twice daily). She is doing very well, feels great, her CA19-9 is slowly coming down again. We have a scan in 3 weeks so we will know more on the effectiveness of this chemo them. So this is my mom's 3rd chemo regimen. There is no reason to think your husband couldnt have success as well. There is always hope. IF you aren't already seen at a major cancer center that specializes in PC, I would try to get into one for a second opinion. We reached out to Johns Hopkins after folfirinox didn't work. These hospitals have doctors who only treat PC and have alot more knowledge about potential treatment plans. I hope this was helpful!

RE: Folfirinox failure

by Curlygirl1 on Wed Sep 23, 2015 03:49 PM

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Jess,

My husband failed after 5 months of successful Folfirinox. He jsut started last week on G/A.  Yesterday was his 2nd in the 3 and I found out he only got the Gemzar alone.  This is so distressing.  Did your Mom ever have Gemzar alon?  Everything I read says both.

Robyn

RE: Folfirinox failure

by Jess24lynn on Wed Sep 23, 2015 03:51 PM

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On Sep 23, 2015 3:49 PM Curlygirl1 wrote:

Jess,

My husband failed after 5 months of successful Folfirinox. He jsut started last week on G/A.  Yesterday was his 2nd in the 3 and I found out he only got the Gemzar alone.  This is so distressing.  Did your Mom ever have Gemzar alon?  Everything I read says both.

Robyn

No she never received gemzar alone, but in the beginning she did miss a couple of treatments due to her blood counts. I worried too but I think it is normal to miss a treatment here and there.

RE: Folfirinox failure

by loggie on Wed Sep 23, 2015 04:13 PM

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On Sep 23, 2015 3:51 PM Jess24lynn wrote:

On Sep 23, 2015 3:49 PM Curlygirl1 wrote:

Jess,

My husband failed after 5 months of successful Folfirinox. He jsut started last week on G/A.  Yesterday was his 2nd in the 3 and I found out he only got the Gemzar alone.  This is so distressing.  Did your Mom ever have Gemzar alon?  Everything I read says both.

Robyn

No she never received gemzar alone, but in the beginning she did miss a couple of treatments due to her blood counts. I worried too but I think it is normal to miss a treatment here and there.

I too missed several treatments due my blood counts and could never do three in a row as originally planned. In addition, my dosage was reduced my 25%. I would ask your oncologist about the possibility of reducing the dosage rather than removing the abraxane altogether. It's my understanding that the reason the combo works so well together is that the abraxane does something to allow the Gemzar to attack the Cancer cells. I'm sure you can find more on this on the Internet or my another poster. Also, there's been a recent study that show doing the Gemzar/abraxane every other week rather than 3 on and 1 off is just as effective and it reduces they side effects. You can do a google search on Gemzar/abraxane and the study should pop right up.

RE: Folfirinox failure

by Curlygirl1 on Wed Sep 23, 2015 04:19 PM

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I actually have read that, too which is calming my anger somewhat.  I jus

t feel like I, as the wife, am trying to manage his therapy and no one is helping.  The orders say Abraxane day 1 and then it's blank after that so did he get interupted and never finish the orders or is that how he really wnated it?  The MD is on vacation, of course, so we are talking to the stand in guy tomorrow.  I will innsist on Abraxane tomorrow. Grr.

Robyn

RE: Folfirinox failure

by nov94 on Wed Sep 23, 2015 08:38 PM

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On sep 23, 2015 4:19 Curlygirl1 wrote:

I actually have read that, too which is calming my anger somewhat.  I jus

t feel like I, as the wife, am trying to manage his therapy and no one is helping.  The orders say Abraxane day 1 and then it's blank after that so did he get interupted and never finish the orders or is that how he really wnated it?  The MD is on vacation, of course, so we are talking to the stand in guy tomorrow.  I will innsist on Abraxane tomorrow. Grr.

Robyn

Sorry to hear you are having trouble with your husband's treatment and missing medication.

RE: Folfirinox failure

by nov94 on Wed Sep 23, 2015 08:47 PM

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Thanks for your messages, we are being treated at a local hospital in Bilbao/Madrid, but they have reluctantly accepted to follow the advise of a Madrid oncologist who also works at John Hopkins, he is Manuel Hidalgo, a mice avatars for the pancreas expert.

That is why having not so nice news from someone of that level is so devastaging, but at least he wants to have us ready to jump into third line hopefully guided by biopsy results or a clinical trial. Local doctors are nowhere near as proactive.

Meanwhile I yearn for G&A success after folfirinox failure stories, just to keep my hopes alive.

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