Back from JH - Stage 4 with mets to Liver

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RE: Back from JH - Stage 4 with mets to Liver

by VAgirl2 on Fri Jul 11, 2014 02:47 PM

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On Jul 05, 2014 6:31 AM murf99 wrote:

My wife, Kathy, is a Stage IV pc patient using a therapy from Dr. Ben Chue in Seattle. He is very willing to work with your oncologist to have them administer the "Chue Protocol" for your loved one. Kathy is 58 and was diagnosed on Dec. 23, 2013. After testing (CT, needle biopsy & PET Scan, CA 19-9 = 23,052) she had one full dose of folfirinox at Kaiser in Calif. but they held out no hope for her. Hundreds of hours searching on the internet led to my discovery of Dr. Chue. We left Kaiser for a chance at survival with Dr. Chue, who's longest surviving Stage IV pc patient is 7.5 years after diagnosis and 5.5 years cancer free. Kathy arrived at Dr. Chue's with a CA 19-9 of 40,820 and after 15 weekly treatments (Gemzar & Paclitaxel) her CA 19-9 is  68. Another Stage IV patient there started with a CA 19-9 of 218,219 and after 21 months of treatment has a CA 19-9 of 53. Dr. Chue does not shy away from Stage IV patients. If you'd like more info please contact me at   murf_lef  at  firenza-llc  dot  com. I'd be glad to send you more info.  Murf 

What is the Chue protocol? I have seen an article from 2009 about his patient diagnosed in 2004 and treated with metronomic dosing - smaller doses of chemo but given every week.  I am 62 and like your wife had my unpleasant "Christmas Surprise" on Dec 18 2014, tumor in head of pancreas and mets to liver.  Just finished my 11th cycle of FOLFIRINOX, but am headed to Mayo - Rochester, MN later today expecting to be switched to Abraxane/Gemcitibine because the FOLFIRINOX is really beating up my bone marrow and the finger and foot neuropathy is getting bad.  But I've been very lucky to have very minimal other side effects and am told that I've tolerated this regimen better than most patients they've treated.  My CA19-9 readings started out at 30 and have peaked at about 174, falling back recently to 150.  When your wife has her weekly treatments, is it just one day or multiple days during the week?

RE: Back from JH - Stage 4 with mets to Liver

by redbiker on Fri Jul 11, 2014 03:23 PM

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If your husband gets a fever of any kind go to the ER.

Peter had similar experience at JH.  He had two stents put in and no treatment (because they were trying to get him into a trial).  Very poor at pain management.

Ended up with liver tumor abscess in local hospital ICU.  The local oncologist was great, the care was awesome and he was put on Gem+Abrax.  A lot of bloating from the gemcitabine, but overall worked great at getting things under control and some quality of life.

As you all know, there are three aspects to survival at stage 4B:

1) staying alive the first 3 months (not something the research guys are good at helping with)

2) getting the visible tumors under control.  chemos etc are getting better at this if you make it through step 1.

3) dealing with the invisible new mets.  either years of searching out each new met or hopefully getting into a trial like immunology or other cancer stem cell targets.

Hoping more of us make it through!

RE: Back from JH - Stage 4 with mets to Liver

by bobss396 on Fri Jul 11, 2014 05:52 PM

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We were always warned to watch Barbara for any fever over 101.5, go right to the ER. I had a digital thermometer that was out all the time.

She also had the bloating and peritoneal fluids building up, which they eventually drained. We too were waiting to get through the new chemo regimen to buy her some time to get her strength back. From the liver-met dx to her death, it was exactly 1 day shy of 3 months.

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