8 years war

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: 8 years war

Postby juliej » Thu Apr 05, 2018 6:20 pm

rp1954, it's been a long war, but it sure looks like you are decimating the enemy! I am sure it's due to your out-of-the-box thinking and your willingness to buck the conservative (and often backward-thinking) medical establishment.

These are our bodies, this is our fight, but sometimes you have to work so hard just to get the docs to consider a different approach (e.g. Life Extension supplements, etc.).

You have empowered me to be more assertive/aggressive in talking to my docs and for that I thank you. I hope the new batch of oncologists coming out of med school are more open to innovative approaches/experimentation, especially for us Stage IV's.

I hope your wife continues to do well. You are undoubtedly her hero.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: 8 years war

Postby rp1954 » Fri Apr 06, 2018 7:24 am

juliej:
I am sure it's due to your out-of-the-box thinking and your willingness to buck the conservative (and often backward-thinking) medical establishment.
My willingness is to fire or replace backwards thinkers after an hour's interview/interrogation. CAM or straight MDs.
In part, I compartmentalize doctors' areas of subject matter expertise and look for eclectic or unique resources across time and geography.

...sometimes you have to work so hard just to get the docs to consider a different approach (e.g. Life Extension supplements, etc.).
This is an indication that this dr might be the wrong dr for some part of the task. Sometimes this is hard to avoid in overlap areas like alternatives during chemo or surgery but it is important to find the best biochemically- biologically based support you can find. In our case, this is often the original medical and scientific papers or researchers themselves, and our integrative internal medicine MD who does alternative cancer tx. Also my wife always tells the drs "to listen to my husband, he has final say". (Sort of...)

You have empowered me to be more assertive/aggressive in talking to my docs and for that I thank you. I hope the new batch of oncologists coming out of med school are more open to innovative approaches/experimentation
(R)evolution often comes from the patients.

mpbser:
I wish you both continue to find better, often natural answers, for your health.

O Stoma Mia
Thanks for your follow ups and clarifications. I think your presence helps readers and newbies a lot.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: 8 years war

Postby KElizabeth » Sat Apr 07, 2018 8:23 am

RP,
Congratulations to you and your wife. I've leaned on your words more than a few times and appreciate your continued efforts to keep us educated on your methods.
I may message you with some questions about folic acid and PSK.
Thank you for your contribution to the group.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 8 years war

Postby DarknessEmbraced » Mon Apr 09, 2018 8:18 am

I'm glad your wife is doing well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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

Re: 8 years war

Postby ktwmn » Mon Apr 09, 2018 11:16 am

(R)evolution often comes from the patients.


Thanks for being the vanguard of the masses (i.e., us)!!
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

Beccaschocked
Posts: 40
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Re: 8 years war

Postby Beccaschocked » Mon Apr 09, 2018 9:04 pm

I simply wanted to echo the thanks and love already expressed by so many on this post.

Whenever I find myself searching a new topic of interest on the board, I almost always find myself on one of your posts. Your dedication and knowledge has armed me with protocols to fuel my fight, renewed hope, and many questions to bring back to both my allopathic and intogrative oncologists.

A sincere thank you and heartfelt congratulations on the 8 year milestone.

Becca
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection; 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.; 1.0; 1.1; 1.1; 0.9......
7/18-2023 - Clean Scans


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