mixed mri results

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Milk Tea
Posts: 24
Joined: Wed Feb 13, 2019 1:14 pm

Re: mixed mri results

Postby Milk Tea » Wed Apr 03, 2019 8:02 pm

Thank you rp1954 for the links. Good article to study further on maintenance chemo and to share with our oncologist. He has never heard of ADAPT. Thank you for sharing your knowledge with us. I have learned a great deal from your posts.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

Gravelyguy
Posts: 138
Joined: Thu Jul 05, 2018 6:03 pm

Re: mixed mri results

Postby Gravelyguy » Wed Apr 03, 2019 9:37 pm

Hopie,

You really do need a referral to a good liver surgeon. Too much chemo is not a good thing if there is a chance at surgery.

After being diagnosed stage 4 with liver Mets, I was immediately referred to Mayo Rochester. I did 4 rounds of chemo then surgery then mop up. The chemo can do a lot of damage to the liver making it inoperable.


Praying for your mom,


Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!

User avatar
LPL
Posts: 586
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: mixed mri results

Postby LPL » Thu Apr 04, 2019 12:45 am

Good Luck today Hopie !
My husband did 4 chemo before liver resection and 8 after. The CT-scan after 4 chemo showed that 1 met had shrunk a little and 1 met had grown a little. (I called that ”no change” in my signature). The pathology said the same for both liver mets; that it was very few living cancer cells in the resected liver mets.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: mixed mri results

Postby hopie » Thu Apr 04, 2019 8:10 am

Milk Tea wrote:My husband is on maintenance chemo because of his extensive liver involvement (12 Mets). Yes all the tumors were out after surgery but his oncologist strongly believes Xeloda plus Avastin will help prevent recurrence in this case for the most critical first two to three years after mop up chemo. My husband manages the side effects ok so he continues on this maintenance.


i'm sorry for confusing everything (maintenance chemo, wife/husband), my mind was half working yesterday. i'm really glad that your husband is able to handle chemo and is cancer-free!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: mixed mri results

Postby hopie » Thu Apr 04, 2019 8:16 am

ok, so, i met with the onc. and one big lesson is this: don't text your oncologist about vital things; they're human, they're busy, and are not always able to recall specifics about a patient. she totally confused my mom with someone else. (she was talking as if mom still had her primary tumor in place and had giant mets.)

after we cleared things, we looked at mom's scans together. she thinks one of the 4 lesions lighting up on PET is not a met; she cannot see another one on either MRIs! so while she insisted that this is not her expertise, she did seem to think that not all 4 might be mets after all. i asked her what outcome we would expect so mom can have surgery, she said it's up to the surgeon and asked if we had a surgeon of choice. i gave her the name i had in mind and she works with him all the time so i'm meeting a surgeon tomorrow!!!!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

Pyro
Posts: 152
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: mixed mri results

Postby Pyro » Thu Apr 04, 2019 8:38 am

Yeah, I only text my Onc if everyone else at his office has failed me, I try not to abuse it and so far he’s been fine with it. They probably only give everyone’s case an hour a week depending on the patient. I’d like to think I’m the only patient, but it just isn’t the case.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda, CEA @30, shit still here

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: mixed mri results

Postby hopie » Thu Apr 04, 2019 9:50 am

Pyro wrote: I’d like to think I’m the only patient, but it just isn’t the case.


this is so true. i've memorized every single detail and i talk as if we're sharing that common ground. so for tomorrow, i'm preparing a fact sheet for the surgeon so we can remain on the same page.
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

User avatar
LPL
Posts: 586
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: mixed mri results

Postby LPL » Thu Apr 04, 2019 12:12 pm

Hopie, Wonderful news about the surgeon you wanted! :)
Best of luck (again :wink: ) tomorrow!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: mixed mri results

Postby hopie » Thu Apr 04, 2019 2:00 pm

LPL wrote:Hopie, Wonderful news about the surgeon you wanted! :)
Best of luck (again :wink: ) tomorrow!



thank you so much! ❤️ here’s to lots of luck to G13D mutants!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: mixed mri results

Postby hopie » Fri Apr 05, 2019 10:04 am

surgery scheduled for 29th!!!! mom will get her 5th roubd on monday without avastin! plan is to do resection laparoscopically(?).

...and she has been resectable right from the beginning!

morale of the story: TAKE ACTION! PUSH DOCTORS!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

User avatar
LPL
Posts: 586
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: mixed mri results

Postby LPL » Fri Apr 05, 2019 11:04 am

Hurray!! So happy to hear this Hopie :)
Best wishes that the surgery will go very well.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: mixed mri results

Postby hopie » Fri Apr 05, 2019 12:03 pm

i might have gotten happy prematurely :(

i was too focused on notes about the liver and just realized this was also there on the mri report:

"2 solid nodular lesions at the left anterior and bladder junction that might be implants"

does this mean mom has peritoneal tumors now????

...why can't i just be happy this is so unfair
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

rp1954
Posts: 1477
Joined: Mon Jun 13, 2011 1:13 am

Re: mixed mri results

Postby rp1954 » Fri Apr 05, 2019 1:27 pm

Congratulations on lining up the surgery. Before surgery is a critical time, a chance to gain extra chances. We did extra things for surgery that had big benefits and extra credit.

If your mom is found with extrahepatic mets, and especially peritoneal mets, surgeons are likely to stop the liver surgery as "futile", without improvements on the patient and/or the surgeons. I disagree with that position on several bases, and so far, we've dodged that bullet, pre-emptively.

A big part of the credit I give to her 1600 mg cimetidine plus addons for CA199 and CSLEX1 positive tissues, which most likely enabled that "weird", huge immune response my wife had before her first surgery that zapped her peritoneal stuff. Part I give to IV vitamin C for Kras mutant cells' characteristics, combined with immune enhancements and other Kras related vitamin science, as well as metronomic oral chemo. We had not yet even reached full swing on alternatives, like adding celecoxib and some of the better immune supplements to UFT.

Other nasty habits that we have, include changing scheduled surgeons and adding interviews for reconnaissance in hostile territory and more detailed information.
Last edited by rp1954 on Fri Apr 05, 2019 1:40 pm, 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 mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: mixed mri results

Postby hopie » Fri Apr 05, 2019 1:36 pm

i said i wouldn't with vital things, but i did end up texting her onc and her surgeon. onc said she "neither understood nor saw" those lesions. surgeon said he hasn't seen them either but we'll look at the scans more carefully monday. and that he still thinks surgery should be given a shot. so i asked if this means that this wouldn't change our plans. he said "i don't think so, we already know it's a metastatic disease, unless the spread is extensive."

my meeting with the surgeon was great too, he answered all my questions and i had plenty! so even in the worst case scenario, i felt good to know that they're on mom's team.
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: mixed mri results

Postby hopie » Fri Apr 05, 2019 1:37 pm

rp1954 wrote:Congratulations on lining up the surgery. Before surgery is a critical time, a chance to gain extra chances. We did extra things for surgery that had big benefits and extra credit.
.


all these will be my homework for the coming weeks! i know you accomplished a great response and i hope to achieve a similar outcome!
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.


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