No clinical trial now. Back to folfirnox

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RE: No clinical trial now. Back to folfirnox

by murf99 on Mon Jun 16, 2014 08:49 PM

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On Jun 16, 2014 4:01 PM Harts wrote:

On Jun 14, 2014 5:11 AM murf99 wrote:

On Mar 19, 2014 10:37 PM Harts wrote:

Hello. Got some news today. Tumor marker is up to 8569. Madison called and said I won't be in the clinical trial right now. I'm on their waiting list and could possibly start in 3 months. So, I'll be getting the old chemo folfirnox tomorrow. That's the treatment that lasts 21/2 days. I'll need 5 shots for 5 days to build up the white blood cells that will be destroyed by the chemo.

I can't lie, I'm a bit bummed. The tumor marker numbers doubling does bother me more than not beginning the clinical trial. I wasn't really looking forward to the unknown drug side effects and driving to Madison weekly. I'm also not looking forward to the folfirnox either. And I'll be losing my hair again. Urggg. It was really growing back too.

I guess I wanted you all to know that this stuff does get to me. I'm not strong all the time or positive all the time. It's real and it can be scary. But....I'm ok. Really!!

Karen

Karen,

 How are you doing? Haven't heard from you recently.

 MurfKar

Hi murfkar. I'm doing OK. Lots of heartburn-gas-stomach- intestinal issues. Never feel just right.

How is your wife doing?

Feeling weak but just went on a 4 week chemo break. Dr. Chue's protocol is continuing to show it's muscle as last week Kathy's CA 19-9 was measured at 68. So down from 40,820 to 68 in 15 weeks of treatment. She still feels all of the chemo related issues that everyone else has but the progress in driving the tumor smaller has been good. Send me a private message with your email address and I'll send you a copy of her CA 19-9 results vs. time if you're interested. Kathy's Round 2 treatment will be a completely different set of chemo chemicals so that the cancer does not become resistant. Hang in their and cherish your good days.

murf_lef at firenza-llc dot com

Murf

RE: No clinical trial now. Back to folfirnox

by maxxschiken on Tue Jun 17, 2014 12:03 PM

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Keeping you in my thoughts and prayers Karen.  Have you thought about trying FOLFOX and eliminating the IRINOTECAN for now to see if it is just as effective.  Annie's been on folfox for 11 rounds now and her tumor markers went from 9000 to almost normal.  Her PET/CT last week came up clean!  Liver, pancreas have been clean since May 2012 and with the recurrance of metabolic activity in the lumbar region of her spine last January, last week nothing was found.  Liver, pancreas and even the area where the tumor on the spine was can not be located anymore.  She'll continue with folfox for a few more rounds and when her markers remain below 38, another CT will be done and if NED she will stop all treatments again. 

Hoping all goes well with you whatever you chose for treatment...

RE: No clinical trial now. Back to folfirnox

by maxxschiken on Tue Jun 17, 2014 12:04 PM

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Forgot to mention, folfox is much easier to tolerate than the full regimen and you won't lose your hair.  Annie's hasn't lost a strand and is just in the middle of her 11th round now.

JeffB

RE: No clinical trial now. Back to folfirnox

by Harts on Tue Jun 17, 2014 03:12 PM

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On Jun 17, 2014 12:03 PM maxxschiken wrote:

Keeping you in my thoughts and prayers Karen.  Have you thought about trying FOLFOX and eliminating the IRINOTECAN for now to see if it is just as effective.  Annie's been on folfox for 11 rounds now and her tumor markers went from 9000 to almost normal.  Her PET/CT last week came up clean!  Liver, pancreas have been clean since May 2012 and with the recurrance of metabolic activity in the lumbar region of her spine last January, last week nothing was found.  Liver, pancreas and even the area where the tumor on the spine was can not be located anymore.  She'll continue with folfox for a few more rounds and when her markers remain below 38, another CT will be done and if NED she will stop all treatments again. 

Hoping all goes well with you whatever you chose for treatment...

Hi Jeff. Great to hear from you and even greater is that your wife is doing good!!

I was on Folfox for awhile and my tumor markers were flying up. And tumors were growing still. Bummer. I have a CT coming up again soon. So, we'll see if the nasty Folfirnox is helping me.

Praying for you 2. Karen

RE: No clinical trial now. Back to folfirnox

by Hope134 on Sat Aug 25, 2018 07:38 PM

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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. 

Hi, what was the therapy? Thanks
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