diag: stage 4 pc w mets to liver 07/14/2011

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diag: stage 4 pc w mets to liver 07/14/2011

by maxxschiken on Thu Oct 24, 2013 04:47 PM

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In remission for 17 months with no treatments: 

We met with our pancreatic specialist at UCSF yesterday. He looked at my wife having not seen her for a few months and said "REMARKABLE." He looked at her last 2 months of lab work and said while her CA19-9 is rising her full liver panels were completely normal and did not feel any urgency to begin treatment anytime soon especially after reviewing her last 3 quarterly CTscans showing stability. He examined her by touch the pelvic area, stomach, liver, pancreas etc and said "WOW all this feels like completely healthy organs... AMAZING!"

He also said, "the fact you have inoperable stage 4 pancreatic cancer and 27 months into this disease with 17 of those months stable with absolutely no treatments tells me what cancer there is in you that may be causing the CA19-9 to fluctuate is not an aggressive but slow kind of cancer." He recommended monitoring as we have done with quarterly CT scans, begged us to stop getting lab work done every two weeks and do it only once over month or even every two months instead, he also insisted she maintain her fitness regimen of being in the gym 6 days a week, doing 2-3 hours of training a day.

Needless to say, this was not the response we expected but hey, he's at the top of his game at UCSF and we trust his approach. We were almost certain it was time to begin treatment as suggested by our primary and local oncologist since she's always been proactive with my wife but with all of her recommendations, we have always gone to the top for the best direction. Honestly, if we had gone with our primary's initial recommendation of treating my wife's condition in a palliative nature with a mild form of chemo called Xeloda along with radiation which she said my wife wouldn't lose her hair of suffer much from side-effects, I doubt very much she would be here today and in remission for the last 17 months.

He also indicated "treatment may be needed in 2014....hmmmm or 2015...." then he stopped and said, "I made the mistake of picking a number with you back in 2011 and told you 3-6 months, possibly 8-12 months with treatment and its now over 2 years since diagnosis and you proved us all wrong! So this time I'm not giving you a date when treatment may start again because many people with your numbers are living years after." And with regard to treatment, he said Folfirinox worked wonders for my wife having tolerated 19 sessions in 10 months between August 2011 and May 2012 and if needed would recommend it as the first line of treatment "IF" and "WHEN" its time to start. Other very successful combo's await as well should something decide not to be as effective as in the past. Lots of choices and options are there for future use.

Taking UCSF's advice to "just live life!"

RE: diag: stage 4 pc w mets to liver 07/14/2011

by Sisson on Thu Oct 24, 2013 06:43 PM

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On Oct 24, 2013 4:47 PM maxxschiken wrote:

In remission for 17 months with no treatments: 

We met with our pancreatic specialist at UCSF yesterday. He looked at my wife having not seen her for a few months and said "REMARKABLE." He looked at her last 2 months of lab work and said while her CA19-9 is rising her full liver panels were completely normal and did not feel any urgency to begin treatment anytime soon especially after reviewing her last 3 quarterly CTscans showing stability. He examined her by touch the pelvic area, stomach, liver, pancreas etc and said "WOW all this feels like completely healthy organs... AMAZING!"

He also said, "the fact you have inoperable stage 4 pancreatic cancer and 27 months into this disease with 17 of those months stable with absolutely no treatments tells me what cancer there is in you that may be causing the CA19-9 to fluctuate is not an aggressive but slow kind of cancer." He recommended monitoring as we have done with quarterly CT scans, begged us to stop getting lab work done every two weeks and do it only once over month or even every two months instead, he also insisted she maintain her fitness regimen of being in the gym 6 days a week, doing 2-3 hours of training a day.

Needless to say, this was not the response we expected but hey, he's at the top of his game at UCSF and we trust his approach. We were almost certain it was time to begin treatment as suggested by our primary and local oncologist since she's always been proactive with my wife but with all of her recommendations, we have always gone to the top for the best direction. Honestly, if we had gone with our primary's initial recommendation of treating my wife's condition in a palliative nature with a mild form of chemo called Xeloda along with radiation which she said my wife wouldn't lose her hair of suffer much from side-effects, I doubt very much she would be here today and in remission for the last 17 months.

He also indicated "treatment may be needed in 2014....hmmmm or 2015...." then he stopped and said, "I made the mistake of picking a number with you back in 2011 and told you 3-6 months, possibly 8-12 months with treatment and its now over 2 years since diagnosis and you proved us all wrong! So this time I'm not giving you a date when treatment may start again because many people with your numbers are living years after." And with regard to treatment, he said Folfirinox worked wonders for my wife having tolerated 19 sessions in 10 months between August 2011 and May 2012 and if needed would recommend it as the first line of treatment "IF" and "WHEN" its time to start. Other very successful combo's await as well should something decide not to be as effective as in the past. Lots of choices and options are there for future use.

Taking UCSF's advice to "just live life!"

Congratulations!!!

I'd love to talk to you about your regimen to learn why what  you're doing has worked and try help others. 

Susanna Sisson RN BSN LMT NFPT

832 297 5921

susanna@healinghandsmassages.com    www.healinghandsmassages.com

RE: diag: stage 4 pc w mets to liver 07/14/2011

by RogerChicago on Thu Oct 24, 2013 10:07 PM

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So glad to hear of you and your wife continuing to thrive.

You think Xeloda is strictly palliative?  Roger Stump is enjoying a long remission of almost ten years probably thanks in large part to it, and my mom is still here and working full-time nearly a year after stage iv pc adencarcinoma diagnosis.  She began this round of treatment on Xeloda and hasn't been switched to anything else yet. 

RE: diag: stage 4 pc w mets to liver 07/14/2011

by maxxschiken on Thu Oct 24, 2013 11:07 PM

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I've learned to accept all treatments options for stage 4 inoperable adenocarcinoma pancreatic cancer with metastisis to the liver is palliative. 
As of now, there is no cure for this diagnosis and the prognosis for many is still very grim. 

We can't and don't know for sure how my wife would have done with Xeloda/Radiation but what we do know in our situation is Folfirinox while for many it does not work,  it became the perfect option for my wife having tolerated it well for 19 sessions in 10 months without a break.  Yes, her white blood cells never changed giving indication treatment needed to be stopped.  The only side-effect she experienced ongoing throught the treatment period was a sensitivity to cold temperatures and only a very mild case of neuropathy. 

After 6 months of treatment the 5cm tumor on the body of her pancreas reduced in size to 4mm and the two spots measuring less than 1cm on her liver disappeared and never returned.  After an additional 4 months of treatment the 4mm tumor became a scar tissue with no metabolic activity and the liver remained clear.  She was declared NED with no evidence of new or progressive metastatic disease and no tumor recurrence in June 2012 and continues to be stable today with no treatments.

I've not read much on Roger Stump from CTCA only that he briefly took Xeloda but found his greatest success came for 8 months or so was on a cocktail of drugs similar to Folfirinox. 

Great to hear your Mom is doing well with Xeloda.

RE: diag: stage 4 pc w mets to liver 07/14/2011

by Harts on Fri Oct 25, 2013 07:37 PM

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Hi maxxschiken it's been awhile. Glad to her your wife is doing great. I'm doing good. Still on chemo and still here :)

I'm wondering what Anne's CA19 numbers are. I was down to 65 in June. I'm at 255 now. Ct's didn't show any growth in August. Next CT at the end of November, unless my numbers climb higher and faster.

Thanks, Karen

RE: diag: stage 4 pc w mets to liver 07/14/2011

by Kjohnchas on Sun Oct 27, 2013 10:36 AM

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Max,,,great to hear your wife is good,you were one of my first friends on this forum when things were grim,you gave me such hope,and now here we are,with no treatment for 7 months before another scan and doing good. Praise God kathy

RE: diag: stage 4 pc w mets to liver 07/14/2011

by kat228 on Mon Oct 28, 2013 04:39 PM

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Hi Maxx, So happy for you and your wife. Stability is great news. I appreciate all the information. What is her Ca 19-9 rising to? Best regards, you both are in my prayers always. Kat

RE: diag: stage 4 pc w mets to liver 07/14/2011

by raymondmin on Fri Nov 01, 2013 10:28 PM

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Hi my wife was dx with pan 4 to liver at end of july now on 4thof gem/abr.  No major issues other than low white cell count and buzzy feeling on her fingers and toes and ball of foot.  our onco choose this rather than 5-FU. last cat showed 60%  reduction of turmour size  ca19-- 5500 to287. Liver  met shrinking. My question is how long have you been on g/a/?  How long  did it take to push number s down to below 100'?Have you done other chemo?

I am scared ..Any advice would be apreciated

RE: diag: stage 4 pc w mets to liver 07/14/2011

by pchiriboga on Sat Nov 02, 2013 06:22 PM

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im so happy for your wife. Gives me hope! My mother was diagnosed with stage iv PC with mets to liver on march 2013. She did 11 treatments of fu5 and it stopped working. This wed she received her 1st chemo of gemzar/abraxane. We are also working to get her into inmunoteraphy tcell trials. Your wife's cancer is adenocarcinoma?

anyone on gem/abraxane has experienced bad abdominal cramping and drowsiness as a side effect?

 

RE: diag: stage 4 pc w mets to liver 07/14/2011

by raymondmin on Mon Nov 04, 2013 11:36 PM

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On Nov 02, 2013 6:22 PM pchiriboga wrote:

im so happy for your wife. Gives me hope! My mother was diagnosed with stage iv PC with mets to liver on march 2013. She did 11 treatments of fu5 and it stopped working. This wed she received her 1st chemo of gemzar/abraxane. We are also working to get her into inmunoteraphy tcell trials. Your wife's cancer is adenocarcinoma?

anyone on gem/abraxane has experienced bad abdominal cramping and drowsiness as a side effect?

 

no cramping tired for a couple a days yes adenocarcinoma

will be praying for your mom

best to you

ray

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