8 years war

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rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

8 years war

Postby rp1954 » Sun Mar 25, 2018 11:27 pm

2am, the phone rings. A world away, my wife is in the recovery room after a colonoscopy for intractable diarrhea. After a month, treated 4x for amoebic dysentery after visiting an exotic vacation locale, she'd lost 25% of body mass. Crying, she's just been told she has colon cancer instead, obstructing the scope 6 inches in, about 95% closed. The hospital staff wants to do surgery now.

What to do? Seriously compromised, she needs an intensive makeover first. Also a good CT scan, personal 2nd opinions, nutritional fortification, a well planned, well chosen, well prepared surgery, with additional post op treatment preparations. So, I say "You know my --- died of CRC. There's a first aid treatment for CRC, I'll call you back in an hour".

After the death of a parent decades earlier from mCRC, and a lineal grand parent before I was born, I've been aware of cimetidine and Life Extension Foundation for years. I also was somewhat aware that Japan had different cancer answers, as did some nutritional medicine researchers.

Over the next 1-2 days, I got my wife on 1600 mg cimetidine and many of the nutraceuticals recommended by Life Extension; more added asap. From there we customized the nutraceuticals based on research, availability and experimentation.

After a 4 week swirl of logistics, scan, consults, interviews, crosscurrents, arrangements and our experimental neoadjuvant immune treatment, the surgery gets done. At the operating room door the surgeon informs me, "I didn't get it all", and that clips outline a target area on the peritoneum for radiation. eek! However, a very surprised pathologist doesn't quite believe what he sees, the surgeon too, with a massive granulocytic attack - most cancer tissues turned into non-analyzable mush, with only some shards of the primary and lymph nodes left. The peritoneal met(s) and deposits in mesenteric fat have been wiped out, but there are serious contradictions, miscommunication, confusion all around now when the surgeon's answers, oncologists' opinions, other medical opinions and medical papers, are all juxtaposed. Their precise discrepancies will take me a long time to work out. Some reflect the usual (mis)handling of patients in 2010 for unexpected results, for para-aortic LN, formalism and changes between AJCC 6 and 7, and pessimism for peritoneal spread. Also a too common medical disdain for outsiders, for foreign, experimental or nonstandard treatments, even backed up by papers.

After surgery, we made another set of improvements to the nutraceuticals for 6 weeks, while getting medical opinions and doing research. We rely on no one group for answers. The nutraceuticals and cimetidine alone are not enough. Then we add Japanese style immunochemo with oral 5FU and get more response. Continuous daily chemo with UFT has begun.

Over some months, we struggle to damp down some slowly developing 5FU side effects. These are mostly mild stomatitis and those monitored in the CBC blood tests, which turn out to be largely driven by folic acid toxicity and a lack of certain nutrients. Temporary 5FU dose reduction allows some para-aortic mets to begin to reassert themselves until immunochemo improvements, nutraceuticals, extra blood tests, and another surgery restore my wife to a stable, near NED state, at 13 months post dx. 6mm lung thingies - one disappears, one turns to stone, one just sits there. At two years, some liver masses have surprisingly broken up, dramatically shrunken or disappeared. After removing all the folic acid and making nutrient improvements, her primary side effect is some chemo brain.

Long term we struggle with logistics due to sometimes disappearing supplies (-rs), house moves, family caretaker responsibilities, and the burden of continuous treatment with improvements across years. A major shortfall on any critical component yields a response in the markers that can take months to a year to mostly beat back down with chemistry changes. There is an unsteady hop and skip toward fewer pills and fewer IV vitamin C infusions across the years.

Here at 8 years, she feels fine and can still play the piano. CEA is back close to baseline ca 2.2, CA199 is 2-3x Upper Limit. With big gaps of time, AFP had stealthily doubled over 5x, to 40x higher in 2016, before being quickly clubbed down 75% with redoubled IV vitamin C to the immunochemo stack. The CT scan is overdue.
Last edited by rp1954 on Thu Mar 29, 2018 7:30 am, edited 1 time in total.
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

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: 8 years war

Postby Caat55 » Mon Mar 26, 2018 9:55 am

Please share more about the nutraceuticals.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: 8 years war

Postby ktwmn » Mon Mar 26, 2018 11:57 am

rp:

This is testimony to the judicious use of supplemental care. Thank you for all your input on this forum! I know whenever I needed advice, for mitigating SEs (for example) you always respond! You are obviously an awesome caregiver! Thanks for all you do!
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

SarahS
Posts: 49
Joined: Sat Mar 11, 2017 12:44 pm

Re: 8 years war

Postby SarahS » Mon Mar 26, 2018 12:11 pm

Thank you rp1954 for sharing this intimate account of your ongoing "war"
You must be rather tired, becasue it is indeed a war.
Since the very first time I started reading this forum you have been a huge inspiration to me .
My husband was stage 4 at diagnosis, with widespread metastases and as a bonus KRAS mutated and MSS, so the outlook was bleak
Your posts have given me hope during some of the darkest of days. We need more people who think outside of the box,
I don't post here very often anymore and I need to update my signature, husband and I are still fighting our war, 16 months now and last scan was "grossly stable"
I do read here every day and even though at first I described you as "that cryptic man" to my husband, I have come to understand more of where you are coming from and I have nothing but the upmost respect for all that you do for your dear wife. May she have many,many more quality years.
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

lpas
Posts: 1009
Joined: Wed Nov 19, 2014 11:11 pm

Re: 8 years war

Postby lpas » Mon Mar 26, 2018 10:37 pm

This is such an important story and there are too few here who know or understand it. I am in awe of what rp has accomplished on behalf of his wife. Some may question his methods but the proof is truly in the pudding.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing celecoxib, cimetidine & other targeted supplements
Mom to a 5 & 8yo

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: 8 years war

Postby Shana » Wed Mar 28, 2018 12:08 pm

Wishing you and your wife many many more years together. Your knowledge challenges my comprehension but I have learned a lot from your input on here.

Thank you!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: 8 years war

Postby CRguy » Wed Mar 28, 2018 12:27 pm

rp1954
Continued success moving forward and many thanks for being such a supportive member of this forum !!

Mega Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: 8 years war

Postby rp1954 » Thu Mar 29, 2018 7:27 am

Thanks everybody, I wish you every success too.

Caat55:
Please share more about the nutraceuticals.
I've had over 2500 posts on the boards that share our CRC experience and research, albeit not all of them in obvious, or friendly places, or circumstances...

ktwmn:
...Thank you for all your input on this forum! ...for mitigating SEs
I'm not clear at all which supplements you've tried but I hope that you will be able to better your situation more. Taking the bull by the horns meant we got rid of most side effects but our basic aim included substantially better anti-cancer and OS performance. This is why I try to show how Dr Lim's ADAPT backbone might be better extended with "excessive" amounts of the right stuff and bloodwork, parallel to what we do with UFT, as well as the targetable cimetidine parts. When waiting on trials, it is possible do your own personal therapeutic trial to better QoL and longevity.

SarahS:
...rather tired....a huge inspiration to me....Your posts have given me hope during some of the darkest of days. We need more people who think outside of the box,
Yes I'm tired, and frustrated. Often I feel like I am talking to myself and not connecting my comments well enough to really motivate people when they may have better options. Also, I thought after a year or two or three, she might get a more definitive surgery or I'd be able turn my wife over to an interested oncologist once we had a working treatment. Silly me.

I don't post here very often anymore...last scan was "grossly stable"
You might still find extra possibilities when you participate or share more detail. Those blood numbers that I rave on about can be a key, posting helps in both directions to spur improvements.

..."that cryptic man"
At first, I used to post far more simple details personal, scientific and integrative. Educated heresy brought some quick attacks on all boards, not so much argy-bargy as simply being pole-axed.

lpas: Thanks for your inside insights, they are helpful and will benefit others. I'm glad for your success.

Shana: Thanks for the good tidings. I hope my comments on pushing, nibbling at the edges of surgery are useful.

CRguy: Thanks for your recognition, supportive comments and moderation on integrative topics.
Last edited by rp1954 on Thu Mar 29, 2018 8:29 am, edited 2 times in total.
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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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: 8 years war

Postby O Stoma Mia » Thu Mar 29, 2018 8:25 am

rp1954 wrote:...I've had over 2500 posts on the boards that share our CRC experience and research, albeit not all of them in obvious, or friendly places, or circumstances...
.

There is a wealth of information in these posts. Anyone who wants to explore rp1954's knowledge base on this board can do so by following the instructions outlined in the link below. You can even use this system to search for terms like .. NUTRACEUTICAL*

Link to rp1954's previous posts
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57693&p=454654#p454654

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

Re: 8 years war

Postby mpbser » Sat Mar 31, 2018 5:52 pm

I share the thanks for rp1954. You serve this forum extremely well. Kudos to you and best wishes to your wife for many years to come.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

bitchslapped
Posts: 1525
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: 8 years war

Postby bitchslapped » Sun Apr 01, 2018 2:03 pm

O Stoma Mia wrote:
rp1954 wrote:...I've had over 2500 posts on the boards that share our CRC experience and research, albeit not all of them in obvious, or friendly places, or circumstances...
.

There is a wealth of information in these posts. Anyone who wants to explore rp1954's knowledge base on this board can do so by following the instructions outlined in the link below. You can even use this system to search for terms like .. NUTRACEUTICAL*

Link to rp1954's previous posts
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57693&p=454654#p454654


Stoma, You are simply the best! So glad you are back posting again :)

rp1954, Congratulations to you & DW on this 8 yr milestone. Glad to see you open up in sharing your story as there is so much more to living w/cancer i.e., the struggle as you have illustrated. Agree that you appear somewhat cryptic...then when you finally condensed your supplements into a thread last year to help those that had been asking what you take...POOF, it was gone. At least I couldn't find any trace that it had ever been there, which makes me think it was "taken down". If so, then unfortunate, as you have always been careful to share vs. recommend. Hope you can or will repost & let others decide the merits based on their own unique circumstance.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: 8 years war

Postby rp1954 » Sun Apr 01, 2018 6:08 pm

Thanks BS, most of this was already out there, somewhere. This is a condensed, consolidated version.

..POOF
I'm not sure what you saw, what example might have been given if its mine; perhaps allow for our reader/writer fuge states in the wee hours or excessive hints, dunno. It wasn't a lengthy, fully articulated, targeted version. Over time, I have given a "pool of potential ingredients", (mostly those previously listed by Life Extension sometime for cancer or CRC), some particular avoidances (e.g. folic acid replacement), that we found higher dose application for some components, and 1-2 non LEF components. My original guest post did list most of our "first aid", neoadjuvant formula, which is historical and not targeted or optimized. For me to just dump a later, specific adjuvant script out there short circuits the concept of targeting, which has several steps and lacks context. An adjuvant dump can lead to circularity and willy nilly mistakes, with a total lack of reciprocity, context, and growth for all.

...let others decide the merits based on their own unique circumstance.
I encourage others to get their own integrative medical/nutritional support, do their own research; potentially I've made that better, broader and easier for them. I encourage them to participate here and to post new conversations from their integrative sources and experience details. Part of what's missing here is effective two way communication, which for fundamental technical reasons, starts with some of those extra blood numbers. Most people balk over reciprocal conversions if anything is too unfamiliar or uncertain, me too. I've only had several candid email correspondents in 8 yrs.
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

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: 8 years war

Postby CRguy » Sun Apr 01, 2018 11:31 pm

bitchslapped wrote: At least I couldn't find any trace that it had ever been there, which makes me think it was "taken down".

NO posts from rp1954 have ever been " taken down " by the mods here

CRguy

stu
Posts: 1219
Joined: Sat Aug 17, 2013 5:46 pm

Re: 8 years war

Postby stu » Mon Apr 02, 2018 8:29 am

You are truly a formidable team . Long may it continue .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

bitchslapped
Posts: 1525
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: 8 years war

Postby bitchslapped » Mon Apr 02, 2018 1:24 pm

rp1954 wrote:..POOF
I'm not sure what you saw, what example might have been given if its mine; perhaps allow for our reader/writer fuge states in the wee hours or excessive hints, dunno. It wasn't a lengthy, fully articulated, targeted version.

CRguy wrote:
bitchslapped wrote: At least I couldn't find any trace that it had ever been there, which makes me think it was "taken down".

NO posts from rp1954 have ever been " taken down " by the mods here

CRguy



Okaaay...I STAND corrected. :D :oops: :lol: Bad on me for poor recall on wee hour of the morning visits! THOSE need to stop. :roll: Thought rp was the author of this thread vs participant.
viewtopic.php?f=1&t=58029&hilit=supplements+I+take

Guess I'm just full of ....WAIT FOR IT.....

BS :mrgreen:
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia


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