Folfirinox - Results?

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Folfirinox - Results?

by megomego on Fri Feb 01, 2013 06:00 AM

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We are looking into next treatments for dad.  Has anyone tried Folfirinox?  And if so, what were your side effects?  Best treatments for side effects?  Scans after treatment?  How long did it take to achieve results?  Best advice you can offer???

RE: Folfirinox - Results?

by oliveF on Fri Feb 01, 2013 08:41 AM

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I have been through 9 cures of folfirinox, overall I had limited side effects

I had some nausea and loss of appetite after the first cure, accupuncture helped me

major issue was persistent  neuropathy after 8 cures

overall it stopped the tumor growth but it did not shrunk the tumor, CA 19-9 went down significantly

RE: Folfirinox - Results?

by maxxschiken on Fri Feb 01, 2013 01:22 PM

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On Feb 01, 2013 6:00 AM megomego wrote:

We are looking into next treatments for dad.  Has anyone tried Folfirinox?  And if so, what were your side effects?  Best treatments for side effects?  Scans after treatment?  How long did it take to achieve results?  Best advice you can offer???

My wife at the age of 57 was dx with inoperable stage 4 pc/liver mets in July 2011 and began folfirinox about a month later.  At dx they found a 5cm tumor on the body of her pancreas and two small less than 1cm spots on her liver.  She tolerated 19 sessions within a 10 month period ending in June 2012 without a break from treatments and the outcome was literally a miracle. Mets to her liver were gone and the tumor reduced in size to 4mm after 6 months of treatments.  After an additional 4 months of treatments the liver remained free and clear and the 4mm tumor became a less than 2mm scar tissue! She's been off all chemotherapy treatments since then and her quarterly ct scans and monthly bloodwork have been stable. Since June 2012 her scans have shown no evidence of new or progressive metastatic disease and no tumor recurrence. The only medication she has been taking since being NED is metformin to treat her type 2 diabetes.

Side effects were mild throughout her treatments mostly some fatigue during the week of treatment and for a few days after.  I can remember some days after leaving her first four hour infusion and carrying her bulb of 5FU, we'd be out shopping and walking in the mall for hours and hours.  On her off week from treatments, most of the time it was as if she wasn't sick at all and many many times she forgot she had cancer!  She had some sensitivity to cold things such as opening the fridge and cold water.  Her taste buds were shot during treatments making many things including water taste bitter but she always maintained the thought that she needed nutrition to maintain her weight and strength to get to the next treatment.  She embraced each and every session of folfirinox and I really believe the mind is a powerful tool.  She remained positive until all the work was done! 

The best advice I can give you as a caregiver is to provide your Dad with the strongest and most compassionate support system as possible.  The fact you are here tells me you will be just that!  Hang in there and visit this forum as well as others such aswww.cancerforums.net   and John Hopkins Pancreas Cancer discussion board athttp://pds17.pathology.jhmi.edu/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(199,8)/1420848934

 

 

RE: Folfirinox - Results?

by megomego on Fri Feb 01, 2013 03:17 PM

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Thank you.  Did your wife ever have the rest of the pancreatic tumor removed or no need since scar tissue now?

RE: Folfirinox - Results?

by pingpingli888 on Mon Feb 04, 2013 02:01 PM

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I am very excited to hear your sife's story.

I was DX to PC stage 2 Feb 2012 and had a successful whipple procedure in March 2012. Doctor told me I was "cancer free" after that surgery but needed to have 6 months "maintenance checo"to insure a longer and better life...during the 5th months chemo, test result showing my cancer spread into liver... my oncologist introduced me to Folfirinox. Since September 2012  to December 2012 I tolorated 6 cycles of Folfirinox, my tumor marker dropped dramatically from 690 to the last result 27. And my Mets in liver totally resolved after 6 rounds of Folfirinox.

Now I feel just like a normal person. But my oncologist still insist me to continue another 6 rounds of Folfirinox with same dosage and cycle... It is a very hard treatment. I am reluctant to fo through it again. Would you please advise based opn what fact your oncologist decided 9 rounds of treatment ? how long you have stopped treatment?

 

RE: Folfirinox - Results?

by maxxschiken on Mon Feb 04, 2013 02:20 PM

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On Feb 01, 2013 3:17 PM megomego wrote:

Thank you.  Did your wife ever have the rest of the pancreatic tumor removed or no need since scar tissue now?

According to her oncologist at UCSF, "no need to disturb what is no longer there."  The less than 2mm scar tissue has no metabolic activity.  We will just leave it alone.

RE: Folfirinox - Results?

by maxxschiken on Mon Feb 04, 2013 02:26 PM

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On Feb 04, 2013 2:01 PM pingpingli888 wrote:

I am very excited to hear your sife's story.

I was DX to PC stage 2 Feb 2012 and had a successful whipple procedure in March 2012. Doctor told me I was "cancer free" after that surgery but needed to have 6 months "maintenance checo"to insure a longer and better life...during the 5th months chemo, test result showing my cancer spread into liver... my oncologist introduced me to Folfirinox. Since September 2012  to December 2012 I tolorated 6 cycles of Folfirinox, my tumor marker dropped dramatically from 690 to the last result 27. And my Mets in liver totally resolved after 6 rounds of Folfirinox.

Now I feel just like a normal person. But my oncologist still insist me to continue another 6 rounds of Folfirinox with same dosage and cycle... It is a very hard treatment. I am reluctant to fo through it again. Would you please advise based opn what fact your oncologist decided 9 rounds of treatment ? how long you have stopped treatment?

 

My wife received 9.5 cycles or 19 sessions of treatment.  They stopped the treatments completely after 10 months of continuous treatments and when she got her CT scan in June of last year revealing no evidence of new or progressive metastatic disease and no tumor recurrence.  It has been 8 months now OFF all chemotherapy.  The only medication she is taking is METFORMIN to treat her type 2 diabetes which she was diagnosed with 6 years prior to being diagnosed with inoperable stage 4 pancreatic cancer in July 2011.  They will keep her OFF treatment until her blood work or quarterly CTscan reveal something is going on.  For now, she remains stable so there is no need to medicate what is no longer there.

RE: Folfirinox - Results?

by bestfriendmom on Tue Feb 05, 2013 03:15 PM

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my mother has stage 4 PC that has metasized to her liver.  She under went the whipple procedure in January of 2012 however they were not able to remove all of the tumor as part of it was hiding behind an artery.  She had 3 rounds of Gemzir (spelling) and had to stop because she got pancreatis in what was left of her Pancreatis.   In August 2012, the told us that they believed that she was NED and we started working on her bucket list.  In October after a trip to visit her 98 year old mother in New York, I noticed that something was not right.  We went back to the dcotor's and found that the cancer had spread to her liver.  The tumor is wrapped around her arties.  She has had 8 treatments of Folfirinox and is tired all of the time.  She also is sick to her smotach most of the time.  All of these are treatable sick effects.   We go this Friday to see if the tumor has shrunk at all.  This chemo has been easy on her then the other chemo.  The side effects are not as bad and they are easy to control.

I have read hear on this website and othe place that Folfirnox doesn't alway kill the tumor.  It stops the growth of he tumor and lowers the tumor markers.  I pray on Friday that we find that it is shrink her tumor because it is the only treatment left for her.  She is not a candiate for radition because of how the whipple procedure was done

 

good luck you are in my thoughts and prayers

RE: Folfirinox - Results?

by sheann on Wed Feb 06, 2013 01:27 AM

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On Feb 05, 2013 3:15 PM bestfriendmom wrote:

my mother has stage 4 PC that has metasized to her liver.  She under went the whipple procedure in January of 2012 however they were not able to remove all of the tumor as part of it was hiding behind an artery.  She had 3 rounds of Gemzir (spelling) and had to stop because she got pancreatis in what was left of her Pancreatis.   In August 2012, the told us that they believed that she was NED and we started working on her bucket list.  In October after a trip to visit her 98 year old mother in New York, I noticed that something was not right.  We went back to the dcotor's and found that the cancer had spread to her liver.  The tumor is wrapped around her arties.  She has had 8 treatments of Folfirinox and is tired all of the time.  She also is sick to her smotach most of the time.  All of these are treatable sick effects.   We go this Friday to see if the tumor has shrunk at all.  This chemo has been easy on her then the other chemo.  The side effects are not as bad and they are easy to control.

I have read hear on this website and othe place that Folfirnox doesn't alway kill the tumor.  It stops the growth of he tumor and lowers the tumor markers.  I pray on Friday that we find that it is shrink her tumor because it is the only treatment left for her.  She is not a candiate for radition because of how the whipple procedure was done

 

good luck you are in my thoughts and prayers

Good luck on Friday hope and pray your mother gets good results - Blessings

Sheann

RE: Folfirinox - Results?

by susie45 on Wed Feb 06, 2013 02:20 AM

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Sending special thoughts and prayers to you and your mom.

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