No clinical trial now. Back to folfirnox

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RE: No clinical trial now. Back to folfirnox

by raymondmin on Thu Apr 03, 2014 01:01 AM

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You're in our prayers. Karen stay strong.

RE: No clinical trial now. Back to folfirnox

by Harts on Fri Apr 04, 2014 09:31 PM

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I just finished the 2nd round of Folfirnox. This week was better then 2 weeks ago. Feeling ok. The tumor marker dropped a 1,000 points. WooHoo!! Down to 7,423.

Going to a Healing Service tonight at my church. Power of prayer does me good.

RE: No clinical trial now. Back to folfirnox

by raymondmin on Fri Apr 04, 2014 10:40 PM

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Yes yes!!! You go girl!! I am doing the happy dance for you tonight! Lol

RE: No clinical trial now. Back to folfirnox

by murf99 on Fri Apr 04, 2014 11:20 PM

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Karen,

Glad your numbers went down! My If you or a loved one are reading this wife's numbers have continued to drop since she left Folfirinox and started the "Chue Protocol" (Dr. Ben Chue of Lifespring Cancer Center in Seattle). She's had 6 treatments and has seen her CA 19-9 drop from 40,820 to 3,248 this week. Also the chemo is much easier to tolerate even though she gets it every week. The protocol also has support for the immune system and a special component to prevent the cancer from becoming resistant to the chemo, which is why so many who get ONLY ONE DRUG from beginning to end of their treatment for pancreatic cancer usually do not make it.  If you or your loved one has this disease I strongly recommend you get in touch with Dr. Chue. (He will direct your oncologist how to apply the protocol, follow it religiously.) On normal weeks, we see 30% drop in CA19-9 PER WEEK.

RE: No clinical trial now. Back to folfirnox

by Carien on Sun Apr 06, 2014 11:20 PM

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Congratulations Karen !

DOWN is the way those numbers should go, and continue to go! Let's hope you can deal with the folfirinox 2nd time around without too many side effects.

Carien

RE: No clinical trial now. Back to folfirnox

by VAgirl2 on Thu Jun 12, 2014 03:52 AM

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Murf99:  

Please share the name & location of your wife's doctor and describe the chemo protocol that has been so successful for your wife (what "standard chemo chemicals" are in it?). Thanks much.

RE: No clinical trial now. Back to folfirnox

by murf99 on Thu Jun 12, 2014 10:52 PM

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On Jun 12, 2014 3:52 AM VAgirl2 wrote:

Murf99:  

Please share the name & location of your wife's doctor and describe the chemo protocol that has been so successful for your wife (what "standard chemo chemicals" are in it?). Thanks much.

VAgirl2,

My wife Kathy just finished Round 1 of her chemo from Dr. Ben Chue of Seattle (www.lifespringcancer.com). Kathy has Stage IV Pancreatic Cancer. When diagnosed her CA 19-9 was 40,820, last week it was 96. Normal is below 37.

Her first round was Gemzar & Paclitaxel given in a reduced dose (~ 1/3) each week for 12 treatments (Metronomic dosing). Some weeks her liver numbers were high enough to cause the doctor to only give her Paclitaxel, so in total she's had 15 weeks of treatment. She also gets Intron A (Interferon) and Leukine to support her immune system.Dr . Chue graduated from Yale and his original medical studies were in Immunology at UCSF before shifting over to Oncology were he originally worked at the Fred Hutchinson Cancer Center in Seattle.

Round 2 is a mix of different chemo chemicals, all FDA approved. This prevents the cancer from becoming resistant. Round 3 is yet a different mix of chemicals for the same reason. I have a copy of the complete Round 1, 2 & 3 Chue Protocol. Dr. Chue is more than willing to help your doctor implement his protocol. It just needs to be followed precisely. Other doctors have changed the protocol once the patient got seemingly 'better' and the results were not good.

Kathy's CA 19-9 has been measured every week since starting the "Chue protocol" and I'm very happy to share the data with you. Since starting the Chue Protocol her CA 19-9 has never gone up. She averages a 33% reduction in CA 19-9 each week on this protocol.  She is still getting chemo so she feels poorly but the math of the chemistry measurement is very good. She's on break now for 4 weeks and is taking Tarceva, Intron A & Leukine. She'll get a PET scan in 2 weeks and we're expecting it to be completly clear, although the cancer tumor marker test (CA 19-9) tells us we're not done. It's just that the PET scan can only 'see' things so small. At such low CA 19-9 levels the tumor should not be visible. Of course the proof of that will be known when we see the scan.

Dr. Chue has one patient (Stage IV PC) who is alive and cancer free after 7.5 years from diagnosis. I know of two others (also Stage IV PC) who lived over 5 years and another is approaching 2 years. The one approaching 2 years started with a CA 19-9 of 218,219 and a few weeks ago it was 53. Kathy will make 6 months in 2 weeks.

Please contact me for the data at:

murf_lef  at  firenza-llc  dot  com

Hope this helps & don't delay 'cause this disease moves quickly,

Murf

From the Web::

Lifespring Cancer Treatment Center
2825 Eastlake Ave E, Suite 200
Seattle, WA 98102-3085

Phone: 1 (206) 686-1266
Fax: 1 (206) 686-1268

RE: No clinical trial now. Back to folfirnox

by Carien on Fri Jun 13, 2014 10:34 AM

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thank you very much, Murf, for this detailed information.
I am very interested in Ben Chue's protocol, as is my primary specialist since I gave him some info on Chue. My oncologists are of the extremely conservative type, so not much to be expected there. 

So the next time I will need chemo 'my prim. spec (a pancreatic surgeon, though I am inoperable and now stage IV) ponders talking to Chue about a protocol and then see if he can have them give it to me at his dept, or somewhere else.  Your info is definitly helpfull, I will pass it on to my doc!  Better to be prepared, starting a round of stereotactic radiation for the single met on my liver next week first.

I will send you a private msg with my email adress, so you can send me the copy of the complete round 1,2,3.

Thanks murf. Carien

RE: No clinical trial now. Back to folfirnox

by murf99 on Sat Jun 14, 2014 05:11 AM

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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

RE: No clinical trial now. Back to folfirnox

by Harts on Mon Jun 16, 2014 04:01 PM

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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?

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