No clinical trial now. Back to folfirnox

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RE: No clinical trial now. Back to folfirnox

by PunkyD on Sun Mar 23, 2014 08:11 AM

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Murf99,

Those sound like amazing results!  All the best to your wife.

Hope she continues to improve and beat her cancer.

Punky

RE: No clinical trial now. Back to folfirnox

by murf99 on Sun Mar 23, 2014 10:48 PM

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Suggest you read this article:: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806805/

Best Wishes.

 Murf99

RE: No clinical trial now. Back to folfirnox

by randr2210 on Mon Mar 24, 2014 02:31 AM

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On Mar 23, 2014 3:58 AM murf99 wrote:

My wife was diagnosed with Stage IV Pancreatic cancer on Dec 23, 2013, her CA 19-9 @ that time was 23,052. We got some second opinions and eventually started her first round of folfirinox which went very badly (her CA 19-9 had gone up & her quality of life was zero). Shortly after I found a US doctor who has had good success with this disease and other cancers. She had a CA 19-9 of 40,820 when she started his protocol and now after 4 treatments of standard chemo chemicals her CA 19-9 is 4,887. His therapy is very tolerable. Another of his Stage IV PC patients started his protocol with a CA 19-9 of ~220,000 and multiple mets. Now after 16 months has a CA 19-9 of 84 and looking forward to ending the chemo therapy. Another of his patients ( Stage III PC) recently got off her chemo with her CA 19-9 @ 7. Please be cautious with your CA 19-9 numbers, my personal observation is that around 20,000 is when mets start to really pick up. 

Murf, can you share where you found the doctor?  I'm going to get another opinion soon, and as we all know, there is no time to waste.

So good to hear of your wife's good progress.

RE: No clinical trial now. Back to folfirnox

by Carien on Mon Mar 24, 2014 03:41 PM

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Dear Karen,

Doubling of your CA19,9 worrying news indeed. I can imagine that you have to take a step back mentally and regroup, so to speak, for the new round. The folfirinox is not such a nice chemo either (I had it too). So all I can say, Karen, is stay strong, stay yourself, and live through it one day at a time. I am cheering for you.

Carien

 

RE: No clinical trial now. Back to folfirnox

by murf99 on Mon Mar 24, 2014 06:57 PM

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Dr. Ben Chue of Lifespring Cancer Treatment Center in Seattle. He will detail out the protocol for your doc (if they are willing to follow it), but it MUST be followed religiously.

RE: No clinical trial now. Back to folfirnox

by cboots42 on Tue Mar 25, 2014 12:22 AM

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murf99, thanks for sharing your story and the article.  A key point (that they discuss in the article as well), is the fact that this individual was KRAS wild type, and therefore more likely to respond to Cetuximab.  Unfortunately, most pancreatic cancer patients have mutated KRAS.  Do you know what your wife's KRAS status is?  Is she receiving Cetuximab as part of the regime?  I'm really curious about this...we're looking to try a third line therapy but (fortunately) there is not enough tumor tissue to biopsy at this point -- certainly knowing the KRAS status, and the variant status of other oncogenic genes would be helpful to determine an appropriate targeted therapeutic approach.

RE: No clinical trial now. Back to folfirnox

by cboots42 on Tue Mar 25, 2014 12:23 AM

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And, Karen, good luck.  I pop in and out of these boards probably on a monthly basis but I always notice your posts and your inspirational attitude.  Sending positive thoughts from a stranger on the internet!

RE: No clinical trial now. Back to folfirnox

by lucky2Bhere on Wed Mar 26, 2014 01:23 AM

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My Thoughts and prayers are with you Karen. <3

RE: No clinical trial now. Back to folfirnox

by murf99 on Wed Mar 26, 2014 07:45 AM

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Don't know the KRAS type. Will ask Dr. Chue today.

Murf99

RE: No clinical trial now. Back to folfirnox

by Carien on Thu Apr 03, 2014 12:21 AM

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How was your first round Karen, how are you ?

Carien

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