Folfirinox

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Folfirinox

by Jess24lynn on Tue Jun 17, 2014 01:50 AM

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Looking to hear about people's experience with folfirinox. Was it effective? Has anyone been deemed NED off this treatment alone? Anyone with PC w/ mets to lungs only have any experience with folfirinox? My mom was diagnosed 2 months ago with stage 4 PC with mets to her lungs. She will be having her 4th folfirinox treatment next week and her 1st scan July 8th.

RE: Folfirinox

by sue1234 on Tue Jun 17, 2014 02:49 AM

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My husband has had good results with oxaliplatin and 5FU. Unfortunately, there was never any hope with NED. It's been stable since Xmas. They recently took him off the oxaliplatin so just getting the 5FU. 

RE: Folfirinox

by JohnNY86 on Tue Jun 17, 2014 03:32 AM

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Over 50% of my cancer went away after 4 treatments. I'm on treatment 8 now and my next scan is end of July. I'm 28... So I seem to deal with side effects pretty well but the drug has been effective so far. I wish your dad the best.

RE: Folfirinox

by JohnNY86 on Tue Jun 17, 2014 03:34 AM

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I meant your mom - so sorry- I'm responding from my cell phone. My apologies and best to your mother.

RE: Folfirinox

by maxxschiken on Tue Jun 17, 2014 11:58 AM

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On Jun 17, 2014 1:50 AM Jess24lynn wrote:

Looking to hear about people's experience with folfirinox. Was it effective? Has anyone been deemed NED off this treatment alone? Anyone with PC w/ mets to lungs only have any experience with folfirinox? My mom was diagnosed 2 months ago with stage 4 PC with mets to her lungs. She will be having her 4th folfirinox treatment next week and her 1st scan July 8th.

My wife Annie was NEVER a candidate for surgery as she was diagnosed with inoperable stage 4 adenocarcinoma pancreatic cancer with mets to her liver back in July 2011 at the age of 57. Her first PET/CT found a 5cm tumor on the body of her pancreas and two lesions on her liver measuring just under 1cm each along with lymph node activity. They gave her 3-6 months without treatment and possibly 8-10 months IF she tolerated treatment. Not if the treatment worked but that the treatment itself may cause her to expire. Well here is some HOPE for you. This coming July 4th weekend will mark Annie's 3 year anniversary since diagnosis of which almost 21 months of this time was spent in remission from May 2012 to January 2014 with no treatment with the exception of Metformin to treat type 2 diabetes and EPIVIR (lamivudine) for her liver and only quarterly CTscans which found no evidence of new or progressive metastatic disease and no tumor recurrance.

Our primary oncologist with this prognosis wanted Annie not to suffer with aggressive chemotherapy.  She wanted my wife to be comfortable and if possible not even lose her hair.  She recommended Xeloda with radiation.  Annie told her oncologist losing her hair and suffering from treatment was the last of her worries and she had nothing to lose by requesting for a second opinion.  We found Andrew Ko M.D. who has specialized in advanced pancreatic cancer research from Stanford Medical Center in the 90's and for the last 10 or more years has been working at UCSF with Margaret Tempero M.D. who paved the way for clinical trials with newer forms of cocktails to treat later staged pancreatic cancer.  Annie chose folfirinox in August of 2011 and tolerated 19 rounds in 10 months of treatment without any interruption. It was the perfect chemo for her body as her white blood cells never dropped requiring a break from treatment. 

They also discovered her liver panels were normal after only 3 rounds of folfirinox chemotherapy.  Really now? Let's be honest can chemo alone do this???  The lesions on her liver vanished, tumor shrank to 4mm and markers were normal after about 6 months of treatment and CA19-9 tumor markers which were as high as 71,000+ were below 38. After an additional 4 months of treatment, the 4mm tumor became scar tissue with no metabolic activity and her liver remained clear. All treatment was stopped in May 2012.

It was not until this passed January when her 2nd PET/CT discovered metabolic activity in the lumbar region of her spine. This explained the excrutiating pain she was in where heavy narcotics were needed for only some pain relief in her lower back, hips and thighs. She developed fluid in her lungs requiring a thoracenteshsis, almost went into a diabetic coma with numbers reaching 700, lost almost 20 pounds and was hospitalized for a week. She was so weak I literally had to carry her, take off and put back on her clothes and bathe her. I honestly did no think she was going to make it! She started folfox (folfirinox minus irinotecan) in mid Jauary and almost immediately her pain disappeared. By her 2nd round of treatment, the pain vanished and since has never returned.

After 10 rounds of folfox, her tumor markers as of yesterday are down to under 400 up from 9000 back at the beginning of the year. Her last PET/CT taken at Stanford Medical Center last week when compared to the one taken last January now shows no evidence of the disease. No metabolic activity anywhere. No new or progressive metastatic disease and no tumor recurrance in her spine, liver or pancreas! The tumor on the lumbar region of her spine can no longer be detected.

Annie will continue folfox until her markers are below 38 and once this is achieved, another CT scan with hopes for another long period of remission and break from treatment.

In April we moved to our new home and even while on folfox chemo she's been active decorating, furnishing and designing her front and back outoor living spaces. She's unstoppable with more energy than me! She wasn't suppose to reach the age of 58, last December she turned 60. Her healthcare team at Stanford say she's a medical anomaly.

I believe it is important to get opinions from high institutions of medicine but once a recommendation is made, any local oncologist should be in the position to follow any newer standard/protocol medical specialists will recommend. 

JeffB

RE: Folfirinox

by Jess24lynn on Wed Jun 18, 2014 12:19 AM

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On Jun 17, 2014 11:58 AM maxxschiken wrote:

On Jun 17, 2014 1:50 AM Jess24lynn wrote:

Looking to hear about people's experience with folfirinox. Was it effective? Has anyone been deemed NED off this treatment alone? Anyone with PC w/ mets to lungs only have any experience with folfirinox? My mom was diagnosed 2 months ago with stage 4 PC with mets to her lungs. She will be having her 4th folfirinox treatment next week and her 1st scan July 8th.

My wife Annie was NEVER a candidate for surgery as she was diagnosed with inoperable stage 4 adenocarcinoma pancreatic cancer with mets to her liver back in July 2011 at the age of 57. Her first PET/CT found a 5cm tumor on the body of her pancreas and two lesions on her liver measuring just under 1cm each along with lymph node activity. They gave her 3-6 months without treatment and possibly 8-10 months IF she tolerated treatment. Not if the treatment worked but that the treatment itself may cause her to expire. Well here is some HOPE for you. This coming July 4th weekend will mark Annie's 3 year anniversary since diagnosis of which almost 21 months of this time was spent in remission from May 2012 to January 2014 with no treatment with the exception of Metformin to treat type 2 diabetes and EPIVIR (lamivudine) for her liver and only quarterly CTscans which found no evidence of new or progressive metastatic disease and no tumor recurrance.

Our primary oncologist with this prognosis wanted Annie not to suffer with aggressive chemotherapy.  She wanted my wife to be comfortable and if possible not even lose her hair.  She recommended Xeloda with radiation.  Annie told her oncologist losing her hair and suffering from treatment was the last of her worries and she had nothing to lose by requesting for a second opinion.  We found Andrew Ko M.D. who has specialized in advanced pancreatic cancer research from Stanford Medical Center in the 90's and for the last 10 or more years has been working at UCSF with Margaret Tempero M.D. who paved the way for clinical trials with newer forms of cocktails to treat later staged pancreatic cancer.  Annie chose folfirinox in August of 2011 and tolerated 19 rounds in 10 months of treatment without any interruption. It was the perfect chemo for her body as her white blood cells never dropped requiring a break from treatment. 

They also discovered her liver panels were normal after only 3 rounds of folfirinox chemotherapy.  Really now? Let's be honest can chemo alone do this???  The lesions on her liver vanished, tumor shrank to 4mm and markers were normal after about 6 months of treatment and CA19-9 tumor markers which were as high as 71,000+ were below 38. After an additional 4 months of treatment, the 4mm tumor became scar tissue with no metabolic activity and her liver remained clear. All treatment was stopped in May 2012.

It was not until this passed January when her 2nd PET/CT discovered metabolic activity in the lumbar region of her spine. This explained the excrutiating pain she was in where heavy narcotics were needed for only some pain relief in her lower back, hips and thighs. She developed fluid in her lungs requiring a thoracenteshsis, almost went into a diabetic coma with numbers reaching 700, lost almost 20 pounds and was hospitalized for a week. She was so weak I literally had to carry her, take off and put back on her clothes and bathe her. I honestly did no think she was going to make it! She started folfox (folfirinox minus irinotecan) in mid Jauary and almost immediately her pain disappeared. By her 2nd round of treatment, the pain vanished and since has never returned.

After 10 rounds of folfox, her tumor markers as of yesterday are down to under 400 up from 9000 back at the beginning of the year. Her last PET/CT taken at Stanford Medical Center last week when compared to the one taken last January now shows no evidence of the disease. No metabolic activity anywhere. No new or progressive metastatic disease and no tumor recurrance in her spine, liver or pancreas! The tumor on the lumbar region of her spine can no longer be detected.

Annie will continue folfox until her markers are below 38 and once this is achieved, another CT scan with hopes for another long period of remission and break from treatment.

In April we moved to our new home and even while on folfox chemo she's been active decorating, furnishing and designing her front and back outoor living spaces. She's unstoppable with more energy than me! She wasn't suppose to reach the age of 58, last December she turned 60. Her healthcare team at Stanford say she's a medical anomaly.

I believe it is important to get opinions from high institutions of medicine but once a recommendation is made, any local oncologist should be in the position to follow any newer standard/protocol medical specialists will recommend. 

JeffB

Jeff, Thank you so much for your response! That is such an encouraging post! My mom will be 57 next Tuesday and if I didn't know that she has cancer I would never guess that she's sick. That is what is so strange about this whole thing, she has no pain, hasn't lost any weight. She presented with painless jaundice in April and now that the jaundice has been relieved she has no symptoms. I know that pancreatic cancer takes most people so quickly and I'm terrified that one day she is just going to wake up and start wasting away. Your wife's experience gives me hope. I can only hope that my moms cancer responds that we'll to the folfirinox treatment!!

RE: Folfirinox

by bushy on Wed Jun 18, 2014 12:51 AM

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 maxxschiken

That is  really a very encouraging post, great example of hope for that chemo regime,I know we all respond differently, but its good to read of the example your wife is setting, wish her continued improvements as we do for all PC sufferers.

bushy

RE: Folfirinox

by Ilovemyfather on Fri Jun 20, 2014 01:31 AM

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Wow. Thanks for that post. Always nice to read and hear some hope. All the best to you and your wife.

RE: Folfirinox

by dhdebbie on Fri Jun 20, 2014 04:10 PM

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On Jun 17, 2014 11:58 AM maxxschiken wrote:

On Jun 17, 2014 1:50 AM Jess24lynn wrote:

Looking to hear about people's experience with folfirinox. Was it effective? Has anyone been deemed NED off this treatment alone? Anyone with PC w/ mets to lungs only have any experience with folfirinox? My mom was diagnosed 2 months ago with stage 4 PC with mets to her lungs. She will be having her 4th folfirinox treatment next week and her 1st scan July 8th.

My wife Annie was NEVER a candidate for surgery as she was diagnosed with inoperable stage 4 adenocarcinoma pancreatic cancer with mets to her liver back in July 2011 at the age of 57. Her first PET/CT found a 5cm tumor on the body of her pancreas and two lesions on her liver measuring just under 1cm each along with lymph node activity. They gave her 3-6 months without treatment and possibly 8-10 months IF she tolerated treatment. Not if the treatment worked but that the treatment itself may cause her to expire. Well here is some HOPE for you. This coming July 4th weekend will mark Annie's 3 year anniversary since diagnosis of which almost 21 months of this time was spent in remission from May 2012 to January 2014 with no treatment with the exception of Metformin to treat type 2 diabetes and EPIVIR (lamivudine) for her liver and only quarterly CTscans which found no evidence of new or progressive metastatic disease and no tumor recurrance.

Our primary oncologist with this prognosis wanted Annie not to suffer with aggressive chemotherapy.  She wanted my wife to be comfortable and if possible not even lose her hair.  She recommended Xeloda with radiation.  Annie told her oncologist losing her hair and suffering from treatment was the last of her worries and she had nothing to lose by requesting for a second opinion.  We found Andrew Ko M.D. who has specialized in advanced pancreatic cancer research from Stanford Medical Center in the 90's and for the last 10 or more years has been working at UCSF with Margaret Tempero M.D. who paved the way for clinical trials with newer forms of cocktails to treat later staged pancreatic cancer.  Annie chose folfirinox in August of 2011 and tolerated 19 rounds in 10 months of treatment without any interruption. It was the perfect chemo for her body as her white blood cells never dropped requiring a break from treatment. 

They also discovered her liver panels were normal after only 3 rounds of folfirinox chemotherapy.  Really now? Let's be honest can chemo alone do this???  The lesions on her liver vanished, tumor shrank to 4mm and markers were normal after about 6 months of treatment and CA19-9 tumor markers which were as high as 71,000+ were below 38. After an additional 4 months of treatment, the 4mm tumor became scar tissue with no metabolic activity and her liver remained clear. All treatment was stopped in May 2012.

It was not until this passed January when her 2nd PET/CT discovered metabolic activity in the lumbar region of her spine. This explained the excrutiating pain she was in where heavy narcotics were needed for only some pain relief in her lower back, hips and thighs. She developed fluid in her lungs requiring a thoracenteshsis, almost went into a diabetic coma with numbers reaching 700, lost almost 20 pounds and was hospitalized for a week. She was so weak I literally had to carry her, take off and put back on her clothes and bathe her. I honestly did no think she was going to make it! She started folfox (folfirinox minus irinotecan) in mid Jauary and almost immediately her pain disappeared. By her 2nd round of treatment, the pain vanished and since has never returned.

After 10 rounds of folfox, her tumor markers as of yesterday are down to under 400 up from 9000 back at the beginning of the year. Her last PET/CT taken at Stanford Medical Center last week when compared to the one taken last January now shows no evidence of the disease. No metabolic activity anywhere. No new or progressive metastatic disease and no tumor recurrance in her spine, liver or pancreas! The tumor on the lumbar region of her spine can no longer be detected.

Annie will continue folfox until her markers are below 38 and once this is achieved, another CT scan with hopes for another long period of remission and break from treatment.

In April we moved to our new home and even while on folfox chemo she's been active decorating, furnishing and designing her front and back outoor living spaces. She's unstoppable with more energy than me! She wasn't suppose to reach the age of 58, last December she turned 60. Her healthcare team at Stanford say she's a medical anomaly.

I believe it is important to get opinions from high institutions of medicine but once a recommendation is made, any local oncologist should be in the position to follow any newer standard/protocol medical specialists will recommend. 

JeffB

Wow, your reply about Folfirinox was so encouraging to those people undergoing treatment with it.  Unfortunately, my husband was not so lucky with that cocktail.  While he underwent two months worth of treatment prior to his Whipple, the tumor actually grew and a lesion appeared on his liver.  The lesion took the Whipple off the table and we decided to get another opinion.  He is now treated at another hospital and receiving Gemzar/Abraxane.  He had three weekly treatments and then suffered an embolic stroke.  Although minor, he was left with some cognitive deficits.  He spent four days in the hospital and was released after confirmation of the stroke.  He is back on treatment for three weeks and then will have another PET scan.  The irony of all of this is that even though his CA-19-9 went down dramaticallly after the Folfirinox, his tumor grew.  I guess everyone responds to each drug differently.  Glad it worked for your wife and I wish her continued good health!!  God bless you both.

RE: Folfirinox

by rwaling on Fri Jun 20, 2014 10:53 PM

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On Jun 17, 2014 1:50 AM Jess24lynn wrote:

Looking to hear about people's experience with folfirinox. Was it effective? Has anyone been deemed NED off this treatment alone? Anyone with PC w/ mets to lungs only have any experience with folfirinox? My mom was diagnosed 2 months ago with stage 4 PC with mets to her lungs. She will be having her 4th folfirinox treatment next week and her 1st scan July 8th.

Hi Jess,

After 12 Folfirinox treatments my 3rd stage inoperable was NED. At the time I was 61 and was first diagnosed in November of 2012 at 60. I was receiving my treatment at CTCA in Tulsa, OK. My surgeon said I was the first PC patient that was NED with Folfirinox alone. He met with the tumor board to see if he should proceed with the 10 hour sub-whipple procedure. The surgery was done on September 25, 2013. 60% of my pancreas was removed primarily the tail and body, all of my spleen, my left adrenal gland, my left ovary and left fallopian tube as well as my omentum. I do have the BRCA 2 gene mutation. And am a 13 year breast cancer survivor.

 I had my first PET scan in January which was clear and completed my second scan in April and it too was clear. My third scan is scheduled for the end of August. Aside from a grapefruit size abdominal hernia that was repaired last week, I am doing well. My energy returned and even though my spleen was removed my immune system has been excellent. Thank you CTCA Tulsa, Dr. Sagun Shrestha, and her team along with my surgeon Pierre Greeff. And a special thank you to family and friends for all the prayers and support. There is definitely a chance for you mom to survive as well with Folfirinox.

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