so confused I don't know where to start

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mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

so confused I don't know where to start

Postby mike218 » Mon Jun 12, 2017 1:29 pm

just had surgery 4/7 @MSKCC-plan was for removal of residual colon tumor (or new one) and HAI pump for known liver mets (the liver mets are 10-15 small (3MM) nodules spread throughout.. While they were in there found 2-3 peritoneal mets (very small) also-so no HAI pump and back home to chemo
I get the feeling though no one says it (oncologist may have mentioned usually < 5 years from mets), chemo is all we are doing --I'm not ready to buy that--years back when they thought I had peritoneal mets everyone was all for ablation, cyberknife or something-no it seems we're just going to sit and watch-aside form being overweight I'm still pretty healthy with this cancer for 3 years
I guess I'm looking for input on anyone with this exp.
Also wondering if anyone had experience with Johns-Hopkins--we are doing our next scan with MSKCC and will see Kemmeny in July but I feel like we're watching weeds grow and no one is doing anything to cut them down--CEA rising

thanks ahead for any thoughts

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: so confused I don't know where to start

Postby Lee » Mon Jun 12, 2017 6:49 pm

Wow, I'm so sorry this happened to you. Have you had a recent PET Scan, if not, push to get one. Start getting opinions at other major cancer treatment centers. See what your options are.

Don't give up the hope yet. This is a set back, butt I do believe you still have options.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: so confused I don't know where to start

Postby mhf1986 » Mon Jun 12, 2017 7:26 pm

DH is a JHH now and we are getting the same "chemo is all there is". No one has brought up proton, spheres, cyber, etc. We are thinking of Georgetown for a consult after next CT scan in July because a friend was treated there and recommended his doctor.

Melissa
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: so confused I don't know where to start

Postby mike218 » Tue Jun 13, 2017 8:16 am

thank you -MRI and CT next week and they usually show nothing-will see about Georgetown ..I cannot see just sitting here waiting for the end be it a year or 3 years and not doing anything to stop it or at least try

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: so confused I don't know where to start

Postby ACPdiddy » Tue Jun 13, 2017 6:11 pm

I have been (and am currently) in the "systemic chemo is all there is" phase. It's not a fun feeling, for sure. I think it is worth getting more opinions to see if there's a shot at getting to a cure from your current status.

But if there isn't now, don't look at chemo as just a hopeless delay tactic, just slowing down the inevitable end. Think of it as a hopeful delay tactic. You just need to keep the cancer at bay for a while, as newer, better treatments are being discovered. Hopefully there will be some hot new immunotherapy treatment you can get on soon that will shrink your tumors back to the point where you can go for a cure.

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: so confused I don't know where to start

Postby rp1954 » Wed Jun 14, 2017 12:08 am

We didn't "let the grass grow" because we pre-empted the dwaddling and the wrong directions, by taking aimed actions ourselves. Mostly at home.

One of the early things we did was to expand blood testing, adding CA199 (+- Kras/Braf mutants) and other tests asap. More tests for a biannual baseline, fewer tests for 3 week to 3 month intervals.

We instituted extra chemo action by adding multiple adjuncts, natural and off label treatments, to chemo.
Basically there are two chemo directions you have at this moment.
1. Folfiri + various things
2. ADAPT (daily Xeloda + celecoxib) + various things.
The "various things" can be different, Folfiri is less compatible with cimetidine among others.

We use IV vitamin C to reduce the side effects of chemo AND to improve biomarkers more. My wife listened to her body's demands, almost described like a hunger, and did 3-5 IV vitamin C infusions per week to help ferry her to another surgery a year later. This was before we even understood that her doctors had written her off from the start. Since then vitamin C infusions have declined to 1 - 1.5 - 2x per week, used along with oral chemo and various extra adjuncts.

Each successful off label treatment set is additive, improving her biomarkers. When we add enough things, the markers go down and recalcitrant things slowly disappear (or petrify) in the scans. Otherwise her biomarkers rise, some alarmingly fast. Also the extras, in wound healing quantities, allow us to restart the 5FU chemo almost immediately after a successful surgery without 90+% of the side effects.

Others also have had good experience with taming their chemo, improving and lengthening their lives whether folfiri or xeloda, with IV vitamin C and other natural adjuncts. Recent publications in even the National Academy of Sciences recognize vitamin C helps kill/control Kras cells. Others show that this can be improved even more with other drugs and supplements but are well outside (sub)standard treatment, where oncologists pretty much know nothing about them.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: so confused I don't know where to start

Postby mpbser » Wed Jun 14, 2017 9:23 am

Like rp1954's loved one, my husband has taken those extra steps while we wait for his oncologist to get her act together. Every day, he's taking graviola, 1g vit c, curcumin, co-enzyme Q10, decaf green tea extract, 5000 iu vit D, 500 mg cinnamon extract, 1000 mg omega 3s (EPA & DHA), milk thistle extract (for liver mets), magnesium, zinc-carnosine-pepzin, and Men's Total Health (a superior multi-vit supplement with the usual vitamins including vit E, vit K, thiamin, riboflavin, pantothenic acid, selenium, manganese, chromium, molybdenum, bioflavonoids [he is a very picky eater so he needs this in supplements], amino acid blend [taurine, L-Methionine, L-Arginine HCL, L-Carnitine tartrate], alpha lipoic acid, pomegranate extract, black pepper extract, lycopene, lutein, boron, vanadium, astaxathin [micoalgae], zeaxathin [Aztec marigold flower extract]).
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


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