Please help, any other options?

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ilovemyfrenchie
Posts: 19
Joined: Fri Nov 03, 2017 9:20 pm

Please help, any other options?

Postby ilovemyfrenchie » Tue May 12, 2020 3:19 pm

I feel like my oncologist is giving up on my mom. She recently had to switch to folfox (4 cycles so far) after her one liver met showed progression after being on folfiri for forever. This folfox is really taking a toll on my mom, she’s only been on folfiri, for over 2 years straight so she’s a strong woman. The dr made a referral to the interventional radiology few months ago (cancelled due to covid). I finally got the appointment back and the oncologist said they won’t be able to do anything. Then why suggest it in the first place?? Just venting. She then gave us the option to go to maintenance chemo or do folfox every 3 weeks instead due to the side effects. She didn’t suggest any other option.

What should I do? I want my mom to have a chemo break but scared the liver met will grow back full force.

I took her to a cancer center 3 years ago for a second opinion when she was first diagnosed. Should I take her back?
Daughter to 59 yo w/ Stage 4 Mets to liver & peritoneal
10/1/17 ER trip for GI bleed found rectal tumor (CEA 71)
10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)
10/17 started Folfiri with Avastin (CEA 171)
8/18 CT = liver Mets continue to shrink (CEA 4)

“Chemo for life” hoping for surgery soon

User avatar
CRguy
Posts: 10138
Joined: Sun Feb 10, 2008 6:00 pm

Re: Please help, any other options?

Postby CRguy » Wed May 13, 2020 3:14 pm

If your docs are not at least willing to discuss other options, then perhaps another opinion would be in order.

Best wishes to you and Mom
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

boxhill
Posts: 516
Joined: Fri Apr 06, 2018 11:40 am

Re: Please help, any other options?

Postby boxhill » Wed May 13, 2020 3:36 pm

So am I correct in reading that your mom has never had the tumor removed because it wouldn't be "curative" because of the mets?

You mention that her liver met is shrinking, but what about the peritoneal mets?

Did you actually see the radiologist, and/or did the radiologist review your mother's latest scans? And how old were they? Did the opinion come from the radiologist or from the oncologist?

You know, we often say here "don't go to a surgeon for an oncology opinion and don't go to an oncologist for a surgical opinion." I think that applies for radiologists also.

Sounds like it may well be time to go consult with a real cancer center. I would want to try for an actual plan to achieve operability rather than a hands in the air attitude. Or at least fully discuss what would go into such a plan.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
Neulasta 6/28
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: many fails before Celebrex helps
12/23/19 CT stable

ilovemyfrenchie
Posts: 19
Joined: Fri Nov 03, 2017 9:20 pm

Re: Please help, any other options?

Postby ilovemyfrenchie » Thu May 14, 2020 12:58 pm

Correct, she wasn’t a candidate for surgery due to the Mets. The perineal mets were never shown on any of her scans only per the general surgery who put her emergency colostomy bag when the tumor was found, but he did not remove the tumor. I did take her to Moffitt cancer center when she was first diagnosed (almost 3 years ago) for a second opinion and the oncologist there said he would recommend the same treatment (no surgery only chemo).

The perineal mets still do NOT show on any scans (pet/mri/ct) so the oncologist still isn’t even for sure she has perineal mets.

All of this is coming from the oncologist. In the very beginning the radiologist did say no intervention can be done due to the perineal mets but this was 3 years ago. We have an appointment to see a radiologist next week.
Daughter to 59 yo w/ Stage 4 Mets to liver & peritoneal
10/1/17 ER trip for GI bleed found rectal tumor (CEA 71)
10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)
10/17 started Folfiri with Avastin (CEA 171)
8/18 CT = liver Mets continue to shrink (CEA 4)

“Chemo for life” hoping for surgery soon

boxhill
Posts: 516
Joined: Fri Apr 06, 2018 11:40 am

Re: Please help, any other options?

Postby boxhill » Thu May 14, 2020 6:28 pm

So the general surgeon didn't remove the peritoneal mets either? Presumably s/he wrote a post surgical report. Do you have a copy of it? If not, I suggest you get one. Many people don't have theirs, but in this case there seem to be a lot of big questions. Maybe she does have peri mets, maybe she doesn't is a big one!

There are many ways to address liver mets. There are also ways to address peri mets.

I'm glad she is seeing the radiologist directly.

BTW, did the surgeon take samples for biopsies, at least? Do you have a pathology report?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
Neulasta 6/28
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: many fails before Celebrex helps
12/23/19 CT stable


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