mixed mri results

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

mixed mri results

Postby hopie » Wed Apr 03, 2019 7:02 am

so mom got her first mri after 4 rounds of chemo (folfox, 3 with avastin).

in her pet scan before chemo, she had 4 liver lesions. now i think she has 3? (no mention in the report about a 4th one)

one has shrunk, one stable, one slightly larger, but the increase is in line with treatment related necrosis.

what does this mean?

i thought this was an okay report, but her onc confused my mom with someone else and said she’ll add erbitux. she said these reports don’t mean anything good or bad, just that they help us choose drugs. after she realized her mistake, she said let’s look at the scan and talk in person. i’ll meet her tomorrow but i’m terrified. i know doctors don’t like talking specifics or giving much info, but i don’t know why she’s being weird. she also said these have nothing to do with surgery plans, which i know is not true.

anyone with a similar experience or some wisdom? i’m losing it.
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 » Wed Apr 03, 2019 8:04 am

I wouldn’t call those results bad, one less lesion is always reason for celebration. OK, there seems to be a bigger one, but if the chemo worked for the other ones, give it time.
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 » Wed Apr 03, 2019 8:26 am

that's the thing; the report doesn't mention it at all. so i'm guessing maybe what they took as growth might be two small lesions collapsing into each other? i wish people did their jobs properly so i didn't have to guess all the time.
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.

martd
Posts: 80
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: mixed mri results

Postby martd » Wed Apr 03, 2019 9:29 am

One of the main things they look at with the first scan is if the cancer is responding to the chemo if not then they try a different line. Maybe this is what the Onc was trying to say, although it obviously has to do with surgery. If there wasn't a good response they wouldn't necessarily say no chance of surgery because she could have an excellent response to the second line. And always talk with the surgeon also, I was told even at my second scan still no chance at surgery by my Onc, he was making plans for maintenance chemo for life. It was a different story with my surgeon by the third scan it was a go.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9

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

Re: mixed mri results

Postby hopie » Wed Apr 03, 2019 10:25 am

that's another issue. i don't know if/whether mom can get surgery. her lesions are small and subcapsular. nobody ever told me she wasn't resectable. nobody ever told me she is resectable, either.

initially, they were going to resect her liver tumors during primary removal but the surgeon said his priority was to keep the surgery laparoscopic. i'm <guessing> that's because he thought it's better to get her started on chemo asap.

her CEA levels have been: 9 before chemo, then 10, 3, 2. CA 19-9 similarly was 25.2 before chemo, then 39, 26.1, 24.7.

segment 3 has two lesions, one went from 1.2x0.9 to 0.8x0.6. the other lesion was only visible on diffusion-weighed(?) images and hasn't changed from 0.5.

segment 7 had 2 lesions according to PET. this report mentions only one that has gone from 0.4x0.4 to 0.7x0.6. this lesion has higher t2 signal and "is in line with treatment related necrosis." report has (necrosis secondary?) or something like that I cannot translate properly.

i don't know if the oncologist thinks mom didn't respond. to me stable, shrinkage, and growth likely due to necrosis doesn't seem bad. all of these tell me that her treatment is going OK. what am i missing?
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.

martd
Posts: 80
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: mixed mri results

Postby martd » Wed Apr 03, 2019 12:12 pm

I agree looks like a good response. Try not to let the radiology report worry you you'll get answers at the appt. , I know that's easier said than done.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9

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

Re: mixed mri results

Postby hopie » Wed Apr 03, 2019 12:37 pm

i'm really happy to hear that you think it's a good response too. oncologist's response made me think i'm missing something. hoping she was just busy and didn't want to brush me off!
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 » Wed Apr 03, 2019 1:33 pm

hopie wrote:so mom got her first mri after 4 rounds of chemo (folfox, 3 with avastin).
in her pet scan before chemo, she had 4 liver lesions. now i think she has 3? (no mention in the report about a 4th one)
one has shrunk, one stable, one slightly larger, but the increase is in line with treatment related necrosis.

Sounds like she has some response to Folfox-Avastin. That's good. But the curative issue is to get to surgery before too much chemo damage or Folfox's exhaustion. I still think immunochemo has advantages at some point before too much chemo, until surgery. Also, many of the ADAPT cases had major responses in their own right, which is great because ADAPT seems likely to be extendable with other goodies too (a Xeloda vs UFT question).

For surgery, bypass the oncologist(s) and lesser surgeons. Identify options, including those with multiple steps. We shrugged off the nay sayers. "inoperable" is often in the eye of the beholder, largely based on their personal skill or in house capabilities. A radiologist volunteered that surgery was really the only way out for my wife, so no backsliding. We self referred ourselves to interview better, more specialized surgeons at other hospitals, and prepared merits and references why my wife was resectable. We made it clear, that we preferred surgery to more chemo or radiation as our studied choice.

The new surgeons interviewed were based on the friend network, or cold calling from looking at the internet. Our best referral came from a family of drs, a girlfriend of my wife. Our second best came from cold calling to interview the head of surgery at one of the better international class of hospitals, out of 4-6 international class hospitals on the list. Our final choice was the head of surgery at the most prominent hospital, who accepted our results with interest.

...she said these reports don’t mean anything good or bad, just that they help us choose drugs.

The oncologist seems to assume she owns your mom, in the chemo trap. I got tired of that in one month of oncology interviews. We don't like parochial answers, and we're gone.
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 » Wed Apr 03, 2019 1:56 pm

rp1954 wrote:The oncologist seems to assume she owns your mom, in the chemo trap. I got tired of that in one month of oncology interviews. We don't like parochial answers, and we're gone.


this is what confuses me; when my mom told her that she assumed to be done with chemo in 6 months, the oncologist said "surgery might change that schedule [meaning it might take longer]." i'm meeting with the oncologist tomorrow alone so hopefully i'll get some answers. if she cannot provide an explanation as well as a willingness to work with a surgeon, i'll get second and/or third opinions.

from what i can tell there is no reason why she shouldn't get surgery. it might be that her mets are in different lobes, but they're tiny and subcapsular so at the very least, they should be good for ablation. my reasoning for not getting the surgery right away is that they're trying to minimize the risk of recurrence. her initial mets reproduced rather fast so any time off chemo is risky. but these are just my heavily-self-educated <guesses> and it shouldn't be the case.
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
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: mixed mri results

Postby O Stoma Mia » Wed Apr 03, 2019 2:34 pm

I have a somewhat technical question about your mother's MRI sessions:

Do you know if she has been faithfully following the MRI instructions during her sessions -- i.e. the instructions to not move around during the scan session, and the instructions to hold her breath continuously for the required time, and then to let out her breath completely at the proper time and to breathe normally after that?

The potential problem is this: She needs to be very calm, motionless, and to follow the instructions exactly, otherwise the MRI images will be too fuzzy and too unclear for the radiologist to interpret accurately, and the images from one MRI session may not be comparable to those of another session.

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

Re: mixed mri results

Postby Milk Tea » Wed Apr 03, 2019 3:27 pm

Please make surgical consult appointment with a best liver surgeon you can find who works at GI oncology department in a big cancer center or a top teaching hospital. Those liver surgeons are experts on GI cancer patients with liver mets. Please don’t take no from medical oncologist or colon surgeon about your mom’s liver surgery. Oncologist often says they will consult with “their team” and get back to you. Thats good but they are busy and have many patients to review on a daily basis. In the mean time, i will ask for referral or self refer and make my own appointment with that liver surgeon for a surgical consult.
In our case, because we consulted with a liver surgeon early, liver surgeon wanted to do surgery after 6 cycles of chemo ( so liver is not too damaged by chemo) instead of the original 12 cycles our oncologist planned.
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

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

Re: mixed mri results

Postby hopie » Wed Apr 03, 2019 3:32 pm

O Stoma Mia wrote:I have a somewhat technical question about your mother's MRI sessions:

Do you know if she has been faithfully following the MRI instructions during her sessions -- i.e. the instructions to not move around during the scan session, and the instructions to hold her breath continuously for the required time, and then to let out her breath completely at the proper time and to breathe normally after that?

The potential problem is this: She needs to be very calm, motionless, and to follow the instructions exactly, otherwise the MRI images will be too fuzzy and too unclear for the radiologist to interpret accurately, and the images from one MRI session may not be comparable to those of another session.


overall, i think she has. i did hear the technician asking her to take deeper breaths or holding them a bit longer, but i'm guessing they did enough takes. she also had former a pet/ct for comparison. i did look at the images myself too and they seemed OK but then again i'm not an expert. the fact that this just adds another level of ambiguity sucks.

also, from the link you had shared on another topic, i do understand that the locations might be why she's not offered surgery at this moment, but it still doesn't tell me why ablation is not being considered either. i simultaneously cannot wait for tomorrow to learn more but i'm also wanting to avoid it out of fear. ugh.
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 » Wed Apr 03, 2019 3:37 pm

Milk Tea wrote: Thats good but they are busy and have many patients to review on a daily basis. In the mean time, i will ask for referral or self refer and make my own appointment with that liver surgeon for a surgical consult.
In our case, because we consulted with a liver surgeon early, liver surgeon wanted to do surgery after 6 cycles of chemo ( so liver is not too damaged by chemo) instead of the original 12 cycles our oncologist planned.


thank you, this is a good suggestion. i will insist on being referred to a liver surgeon. i have someone on my radar, this person is a liver specialist general surgeon, but his expertise is on liver transplants. there's another one at the hospital we're going to, i might ask them too. i wouldn't want 12 cycles either since mop-up chemo feels like a safer option. she should at least tell me about her game plan! the last thing i need in my life right now is an ego-fight between doctors who won't stick to their own fields.

edit: i saw your signature and that your wife is on maintenance chemo after i posted this. for some reason, i was assuming chemo rounds should've been limited to a total of 12 if surgery is involved.
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.

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

Re: mixed mri results

Postby Milk Tea » Wed Apr 03, 2019 4:59 pm

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.
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

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

Re: mixed mri results

Postby rp1954 » Wed Apr 03, 2019 5:30 pm

Food for thought with your oncologist:
Xeloda + Celecoxib vs Xeloda + Avastin

Surgery anyway
especially if you have nicer, better maintenance therapies
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


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