Peri mets

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ScaredButGottaWin
Posts: 12
Joined: Sat Nov 18, 2017 5:53 am

Peri mets

Postby ScaredButGottaWin » Fri Dec 08, 2017 5:53 pm

Hi everybody - just found out I have several tiny peritoneal mets (SRC), so they didnt do my planned resection. Am scared out of my mind. Any advice on best treatment options/centers from here? Plan is to start my on regular chemo in a couple of weeks.
Colonoscopy Nov ‘17
Peri Mets discovered Dec ‘17
CEA 2.4
Start Chemo Dec '17 - FOLFIRI plus Avastin

rp1954
Posts: 1379
Joined: Mon Jun 13, 2011 1:13 am

Re: Peri mets

Postby rp1954 » Sat Dec 09, 2017 11:50 am

My wife's peri mets were apparently necrosed by enhanced immune and metabolic treatment her first few weeks. We took a heavy duty first aid approach to what turned out to be mCRC, started immediately, and then added daily chemo later. Based on more recent papers I've read, this approach may be useful to SRCC too.

We used Life Extension's articles to immediately start "first aid for CRC" and gain important opportunities that conventional medicine hasn't recognized yet, within the first days and weeks. This worked well for us, despite confused information, delays, and some drs that gave up too soon or were too circumspect.

Our CRC first aid plan:
1. Cimetidine and high potency immune supplements, with some extras beyond LEF to immediately launch an immune attack, reduce surgical mets and complications, and remove gross deficiencies e.g. vitamin D, for example.
2. Extra bloodwork. You can't measure, plan, treat or talk about what you can't see. We just order and pay cash for extra blood tests, most of the time. If you have better bloodwork, you can talk about them, better compare, and ask questions.

SRCC has had some light shined on its genetics in the last 7 years. MMP, BRAF and KRAS mutations are more common in SRCC, perhaps even more defects combined at one time. These mutations individually have mild, off label adjuvants that have been discussed in the literature. These are adjuvants that we've used with measurable successes combined with daily chemo.

CA199 is often associated with BRAF and KRAS mutations. If one takes a treat-the-marker(s) approach for CRC, CA199 is useful in the 20s and above (not the ~37 unit cutoff quoted for initial pancreatic cancer detection). Some mild but important treatment components we have used for CA199, are high(est) dose cimetidine and IV vitamin C with daily 5FU based chemo. Although the Japanese recommended 800 mg cimetidine, we used 1600 mg per day for my wife for several years, where some guys may only tolerate 1000-1200 mg/day. ........................................................................................................................................................................[1201]

Basically we tend to take the Life Extension recommendations from 2010 and customize (trim/add) them based on papers, labs and scan results. When I don't like the "standard" curve things are on, time to find a better one.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Steph20021
Posts: 534
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Peri mets

Postby Steph20021 » Sat Dec 09, 2017 6:00 pm

Sounds like you need to get an opinion on having HIPEC. I would do that with the hope of getting to NED before chemo.
ScaredButGottaWin wrote:Hi everybody - just found out I have several tiny peritoneal mets (SRC), so they didnt do my planned resection. Am scared out of my mind. Any advice on best treatment options/centers from here? Plan is to start my on regular chemo in a couple of weeks.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E mutation
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Aug/16- on folfiri
Jan/18-folfox

Canada777
Posts: 57
Joined: Mon Mar 28, 2016 6:24 pm

Re: Peri mets

Postby Canada777 » Sat Dec 09, 2017 7:29 pm

I second the need to get a HIPEC consult ( maybe even a couple). Dh had peritoneal mets from the beginning (2 years ago now) and the third surgeon we approached was the one that said yes to the surgery. From what I remember from the research I read it's a curative surgery for 35-40% with peritoneal mets.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI Sept 2017-June 2018.
Radiation 5 days.

ScaredButGottaWin
Posts: 12
Joined: Sat Nov 18, 2017 5:53 am

Re: Peri mets

Postby ScaredButGottaWin » Sat Dec 09, 2017 10:43 pm

Thanks for replies. Any thoughts on best centers/surgeons for this procedure?
Colonoscopy Nov ‘17
Peri Mets discovered Dec ‘17
CEA 2.4
Start Chemo Dec '17 - FOLFIRI plus Avastin

rp1954
Posts: 1379
Joined: Mon Jun 13, 2011 1:13 am

Re: Peri mets

Postby rp1954 » Sat Dec 09, 2017 11:23 pm

Time frames and actionability

1. "First aid". Most parts can be done within a few hours of shopping today, perhaps even Walmart/Walgreens (cimetidine/Tagamet) without prescription. Most people simply aren't told in time to be most useful and regular doctors are unfamiliar, hence unhelpful or obstructive.
2. Chemo. Post surgical waiting period, typically 2-3 weeks in the US for 5FU, Xeloda or Folfox alone. 6 weeks for Avastin. Most patients let themselves get stuck here for the rest of their lives, on tough chemo treatments. With accelerated wound healing, IV vitamin C and smooth, uncomplicated surgery, we were able to restart her 5FU in 24 hrs, similar to a number of 5FU-surgical papers.
3. Hipec. Typically several months hunting, consulting, waiting, preparing, possibly several weeks wait if you have executive treatment (e.g. Herman Caine's liver surgery at MDA years ago). It's a very selective (most don't qualify, each surgeon decides), tough surgery that can be curative or buy significant time.

In my wife's case, her CEA and CA19-9 markers would be in the middle of stage 4 CRC patients. In my wife's case, we killed the peri mets .stone.cold.dead. in 2-4 weeks of "first aid", the surgeon just had to scoop/scrape dead mets out that he could reach (not all). It is her original para-aortic lymph node spread of micromets that still nags us and requires some daily chemo but usually killed people in 1-2-3 yrs. I favor immediate bloodwork because any successful treatment changes the lab results some, and heavy chemo distorts them with each round. Daily 5FU based chemo, IV vitamin C and "first aid" has clean undistorted looking lab work for us.

One of the odd things about Kras/Braf mutants, which appears to include most SRC, is that the molecular and biological properties that make them so deadly, potentially makes them easier to treat earlier, as smaller masses with less spread. But "standard oncology" does not yet address this well, they already are 12-15 years behind on an important launch point. The most important thing I've noticed with many metatatic cases and papers, including SRC, is keeping an active inhibitor formula on them every day, until as close to surgery as possible. This is of course easier with milder or even intrinsically beneficial treatments.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

henry123
Posts: 135
Joined: Sun Oct 08, 2017 3:25 am

Re: Peri mets

Postby henry123 » Sun Dec 10, 2017 9:28 am

Hi
Peritoneal is like layers and layers of fishnet or very fine filter paper. It's purpose is to act as barrier between various internal organs.
Peri mets are difficult to reach by conventional chemo so HIPEC is reqd. In my case, HIPEC was not an option due to liver and lung mets. These 2 mets had to be totally controlled before HIPEC could be planned.
Avastin and regrofenib were administered to ctrl liver and lung mets but didn't work out.
As last resort, immunotherapy was tried . This seems to have worked on all 3 areas including peri mets.
Hope it helps.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot

TheSquire
Posts: 10
Joined: Wed Apr 26, 2017 11:09 am

Re: Peri mets

Postby TheSquire » Sun Dec 10, 2017 7:03 pm

I recommend contacting Dr Philip Paty at Memorial Sloan Kettering Cancer Center in NYC. He is excellent.
Age 53, male. Diagnosed with rectal cancer in lower rectum on 3/21/17. T2, N0, M0. No surgery. Going with Chemo-radiation approach. Started treatment on 4/25/17. Eight 14-day cycles of XelOx. Ended treatment on 11/3/17. Last rectal exam (12/7) shows no tumor/complete response. Now on "watch and wait."


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