Surgery or not? And Doctors in MD Anderson

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Posts: 294
Joined: Sun Sep 27, 2015 11:29 am

Re: Surgery or not? And Doctors in MD Anderson

Postby kandj » Tue Apr 02, 2019 5:30 pm

Hi Dan. First off, I am so sorry you and your wife are in this boat. Especially after having a baby! We are in Texas, fairly close to MDA, and we were not given much hope by the surgeon that we saw at MDA. we sought a second opinion at MSKCC and DH has been fighting this beast for 3.5 yrs. Is your wife's oncologist at MSKCC? I would go there first, if possible. Another member, Mariane, had her ovaries and liver involved I believe (definitely the liver!, pretty sure the ovaries too) and she was treated at MSKCC with a multi surgery approach. She has been NED since May2016.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

Posts: 156
Joined: Mon Jan 21, 2019 4:25 pm

Re: Surgery or not? And Doctors in MD Anderson

Postby Pyro70 » Tue Apr 02, 2019 6:24 pm

I wish you best of luck with the upcoming surgery. I am a fan of local control through surgery/ablation/radio even if it’s not with “curative intent”, but one needs to remember it always comes with risk.

Thank you for sharing your NGS report. Can I ask what provider performed the testing? Also would you mind sharing the calculated TMB?

Sorry if I missed it in your posts, but could you clarify what you mean by “immunochemo”? Do you also have research paper backing it’s efficacy?

Dx Jan 2017 stage IVB w/ PC age 35
SEP 17 HIPEC 1, anastamosis leak
JUN 18, ileo reversal and 2nd anastamosis leak

Posts: 1532
Joined: Mon Jun 13, 2011 1:13 am

Re: Surgery or not? And Doctors in MD Anderson

Postby rp1954 » Tue Apr 02, 2019 8:02 pm

Pyro70 wrote:[rp1954]... could you clarify what you mean by “immunochemo”?

My previous discussion

Do you also have research paper backing it’s efficacy?

This arises out of many papers from several lines of research and clinical treatment in Japan and the US, leading to the core immunochemo treatments that are substantially documented:
ADAPT for Xeloda (an oral 5FU derivative) + celecoxib, developed in the US, and UFT based (an oral 5FU derivative from Asia)
immunochemo from Japan, UFT + PSK +- cimetidine

Basically, by the 1980s, Japanese drs observed that milder, lower dose, daily 5FU could produce responses or longer OS in patients previously failed by heavy duty 5FU cycles. This was also true of nicer UFT, introduced in the 1980s. This is called metronomic chemo. Sometimes US doctors in the 1980s/90s suggested that their mCRC friends get on a plane and go to a country that used UFT.

There are a number of papers from Japan that showed efficacy with UFT or oral 5FU, combined with PSK and/or cimetidine, in various stage 4 GI cancers, and refractory case histories. The trial paper that I consider most important is Matsumoto (2002), where daily, oral 5FU+cimetidine showed incremental numerical superiority to Folfox in stage 2 and 3 patients, specifically those patients with raised tissue markers for CA199 and CSLEX1 (about 65% of their patients).

Likewise, there are papers where ADAPT showed hell on wheels superiority for stage 4 and mCRC recurs, with good results generally, and some types of patients living many years longer with much better quality of life.

Life Extension Foundation has had its own articles with references about immune enhancing treatments for cancer, surgery, and CRC, specifically.

We combined these and other enhancements in a logical manner to stop metastasis, increase immunochemo intensity, and personal efficacy. Also I worked to ensure that we could track efficacy on an individual patient basis by sequential patient preparation, bloodwork, scans, patient observation and QoL, and surgical biopsy.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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