FOLFIRINOX DONE. WHATS NEXT.....

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FOLFIRINOX DONE. WHATS NEXT.....

by TOMA76 on Wed Apr 30, 2014 10:21 PM

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Hello Everyone,

              Finished round 12 of Folfirinox 3 weeks ago. Had a scan last week and met with doctors today. They describe me as having a complete resonce to the chemo. At diagnosis I had a 4 cm tumor on my pancreas and two 2 cm lesions on my liver. The most recent scan shows no tumors on pancreas at all and 1 of the two spots on my liver has completely dissapeared as well. I go in next week to have what they now believe is a benign tumor biopsied and if it is indeed not cancer then it will be on to the whipple. Just another step in this long journey. I wanted to give everyone an update and Hope that everyone is doing well.

RE: FOLFIRINOX DONE. WHATS NEXT.....

by TFil727 on Wed Apr 30, 2014 11:43 PM

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TOMA,

Sounds like you are doing great!! Congrats on fighting this terrible cancer so successfully!! Keep it up. Take care.

Tonia

RE: FOLFIRINOX DONE. WHATS NEXT.....

by Carien on Thu May 01, 2014 05:22 PM

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Congratulations Tom, on such good news !! Wow, from 4 cm to not visible.... in only 12 rounds. 

I just wonder.... if the tumor on the Pancreas is gone..... then why still the whipple ? If there is no tumor what are they going to remove ? Secondly, the fact that it was spread to your liver means it has been in your blood, and cutting someone open enhances the chance on metastasis (through adding of oxygen on the spot ánd bc of the immunosupressive reaction) or so I understood.

I am probably missing an important argument why it should be done ?

Carien  

RE: FOLFIRINOX DONE. WHATS NEXT.....

by TOMA76 on Thu May 01, 2014 05:44 PM

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Carien

       You make a very good point. I never thought about that and it does concern me. I dont if anyone has any information on this or not. I know the surgeon I met with yesterday was definitely wanting to do surgery if the biopsy on my liver does indeed come back negative. I will try and ask when I go

RE: FOLFIRINOX DONE. WHATS NEXT.....

by Kjohnchas on Fri May 02, 2014 10:18 AM

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Tom,,,, good to hear from you and sounds like you have very promising news. That's great,

RE: FOLFIRINOX DONE. WHATS NEXT.....

by Whippleschmiple on Sat May 03, 2014 04:15 AM

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I have read many stories on here in my (nearly) 4 years on here and met a number of survivors of pancreatic and related cancers or talked to them by phone and if you have a competent surgeon, in my opinion, you are playing russian roulette if dont get the surgery when offered it and pretty fast.  Sometimes on surgery they find mostly dead cancer from the treatment but it is rare, very rare for chemo and radiation alone to bring on a long cure.  I have seen a few miracles for lack of a better word but that is the last choice due to high risk, and the first choice is the whipple in competent hands if a candidate and for many that means chemo and often radiation first to help them qualify.  

Well as I see it the chemo is giving you a narrow window and if they agree to remove questionable tissue, get it out as it seems as though the chemo is the benefit to get you to the surgery but not a long solution, maybe it doesn't fully kill all of it but make it small enough to remove, typically.  Most people do relatively well after but no you cant eat large, fatty, sugary meals and some need to cut out dairy for a while,... and yes its a long recovery but that is the magic word, recovery.  You can do anything you feel is safe but these cancers are not passive, never passive and Steve Jobs waited due to slow growing form, neuroendocrine and that is likely why he didn't survive longterm.  I am active, changed my diet to reduce recurrance risk.

Of the limited number of patients that have ongoing issues after surgery they never talk about how it was done to try and save their life...as I saw it I had no choice and people whose treatment kills most of it off, do go onto surgery.  good luck. 

RE: FOLFIRINOX DONE. WHATS NEXT.....

by pcprof on Mon May 05, 2014 12:33 AM

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Tom, This is great news! I have been following your story because I am also young, 38, and have two children. I was also formerly unresectable, and went to surgery after 8 cycles of folfirinox and 28 days of chemoradiation. My team at MGH gave me a 50/50 chance of getting the whipple and if I didn't get the whipple, they were going to give me interoperative radiation while I was cut open. A good surgeon should never say that the surgery is guaranteed because they don't know what they will see until they go in. Also, the radiation oncologist at MGH said that their data showed similar life expectancies for those who got the whipple and those who got interoperative radiation. But they were going to take me to surgery. 

Once I got into the operating room, they did biospies of my tumor during the surgery to see if the portion surrounding my SMA was dead (that part was dead), although there was active cancer in other areas of my tumor. They did surgery, but as they were peeling the tumor off my SMA, my surgeon tore the SMA, and I needed a transplant surgeon to repair my SMA; I almost died. This is why arterial involvement usually means no surgery, but this is starting to change (places like UCLA are planning surgeries with arterial resection). My surgeon is one of the top in the world, and I was at a place with top notch transplant surgeons who could repair my artery.

My surgery was over 10 hours and my recovery was much longer due to the SMA repair, but the surgery was a success!

RE: FOLFIRINOX DONE. WHATS NEXT.....

by Bryan51 on Mon May 05, 2014 01:51 AM

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Super news TOM!!!! Stay positive and keep fighting. Your WINNING!!!!! Bryan

RE: FOLFIRINOX DONE. WHATS NEXT.....

by maxxschiken on Mon May 05, 2014 01:46 PM

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I agree with Carien about being stage 4...mets to the liver and opening you up for the whipple could be the beginning of some disasterous situations.

My wife was diagnosed with inoperable stage 4 adenocarcinoma pc with mets to her liver in July 2011.  After only 3 sessions of folfirinox her liver panels were normal, after 6 months of treatment the spots on her liver vanished and the 5cm tumor on the body of her pancreas was now only 4mm.  After an additional 4 months of treatment which ended in May 2012, her liver remained clear and the 4mm tumor became scar tissue with no metabolic activity. 

We went to UCSF and Stanford for consultation while she began her remission which lasted 21 months with no treatments and they both stated "do not disturb what does not needed to be disturbed" referring to any ideas of surgery. 

My wife enjoyed 21 months of remission and the recurrence in January of 2014 showed a growth in the lumbar region of her spine which was causing severe pain in her hips, legs and thighs.  As soon as Folfox (folfirinox minus irinotecan) was infused, her pain completely disappeared and now after 7 sessions of treatment, her tumor markers have declined rapidly.  She is scheduled for one more treatment then a CT scan to determine just how affective folfox has been.  Incidently, the primary sites of her pancreatic cancer (liver and pancreas) remain cancer-free.  July 2014 will mark her 3 year anniversary with this disease.

RE: FOLFIRINOX DONE. WHATS NEXT.....

by bushy on Mon May 05, 2014 11:39 PM

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I agree with Whippleschmiple

You have a window of opportunity, very few get that chance grab it,they would not be doing that  surgery for no reason ,where you had cancer needs to have biopsy and cut to clear margins but good luck whatever you decide.

bushy

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