Looking for next steps

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hopefulcaregiver92
Posts: 2
Joined: Sat Jun 07, 2025 12:13 pm

Looking for next steps

Postby hopefulcaregiver92 » Sat Jun 07, 2025 12:30 pm

Hello all,

This is a summary of my mom's battle with Stage IV rectal cancer. She is 69 and MSS with KRAS amplification.

06-09/2022 - FolFoxIri - 6 Rounds
09/2022 - Pet Scan - NED
11/2022 - Surgery to remove Rectal Tumor. Ileostomy
01-04/2023 - FolFiRi - 6 Rounds
03/2023 -Pet Scan - NED
05-06/2023- 5 weeks of Radiation with daily Xeloda
08/2023 - Pet Scan - Spot on Liver
11/2023 - Surgery - Right Liver Resection and removal of Gallbladder. Negative Margins.
03/2024 - Pet Scan - Relapse of liver on left side and lymph nodes
03/2024 - Per oncologist suggestion met with a 2nd Opinion with a Clinical Trial coordinator at a major institution. 2nd Opinion suggested FolFox again due to success prior or perhaps FolFori with with Erbitux added.
03 - 07/2024 - FolFox/Erbitux. Adverse reaction to erbitux. Stopped Erbitux and took about 5 week break.
09/2024 - Pet Scan - Growth of original liver spots. No additional spots found. Likely due to 5 week break.
09-11/2024 - FolFox
11/2024- Pet Scan - Smaller Hepatic Lesions.
11/2024 - 06/2025 - Xeloda 2 weeks on/1 off. 800 mg twice a day as Maintenance. Paused FolFox due to lingering neuropathy.
03/2025 - Pet Scan - Stable Liver Lesions
06/2025 - 2 new spots on liver and a 5mm nodule in lower right lobe of lung. Total of 5 spots on liver in the left side (per pet scan, it appears the biggest is 3.4 cm.).

The news was heartbreaking for the both of us and totally unexpected (even after all she has been through!). Recent bloodwork has been stable. She has a lot more energy and walks everyday at a local park.

We are meeting with our oncologist (who we trust) on Monday to discuss treatment opinions.

Looking for tips/suggestions on what potential treatments could be.
    Should we do FolFox again since it made her stable last year?
    Try Folfiri again?
    Since she was never on Avastin before? Add it to FolFox or Folfiri?
    Hai Pump seems unlikely due to the 5mm nodule in lung?
    Any kind of radiation?
    Would radiation like SBRT or Y-90 be available for the liver even with the 5mm nodule in the lung?
    Meet with clinical trial coordinator again?
    Lonsurf?
    Other chemos?

Since the genetic testing was last done in 2022, should it repeated to see if there are new mutations that might make her eligible for immunotherapy?

Appreciate any help or suggestions. Thank you!

IDF108
Posts: 38
Joined: Wed Nov 16, 2022 4:23 am
Location: Massachusetts

Re: Looking for next steps

Postby IDF108 » Sat Jun 07, 2025 2:13 pm

It’s still semi-oligometastatic, so I would assume total (cryo, RFA, MFA) ablation (or, histotripsy)/SBRT for all liver/lung mets—along with or followed by maintenance Xeloda/Avastin—should be an option.

User avatar
beach sunrise
Posts: 1232
Joined: Thu Mar 05, 2020 7:14 pm

Re: Looking for next steps

Postby beach sunrise » Sat Jun 07, 2025 9:55 pm

Agree with IDF...check out histotripsy. Your mom might be a candidate. Not invasive, uses sound waves to kill liver mets.
I know some have said their surgeons told them get liver mets taken care of first if possible then work on lung mets.
My mets were in my lungs, no liver involvement. I was a candidate for Rolles Laser surgery in Germany. If feasible for your mom DM me for more info.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

hopefulcaregiver92
Posts: 2
Joined: Sat Jun 07, 2025 12:13 pm

Re: Looking for next steps

Postby hopefulcaregiver92 » Sat Jun 07, 2025 10:39 pm

Appreciate your responses.

While it is clear that Xeloda has failed her. I don't think FolFori or Folfox has failed her yet.

I am going to ask at the appointment if we should continue doing FolFori or Folfox with possibly adding Avastin. I am also going to ask if we can also in conjunction do so kind of radiation or possible histotripsy in addition to the chemo approach.

I would think we should try these approaches first and then maybe move to Lonsurf or potentially a Clinical Trial.

I think after the meeting on Monday, I am going to also contact the clinical trial coordinator oncologist that we met as a second opinion before and set up a meeting.

weisssoccermom
Posts: 5990
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Looking for next steps

Postby weisssoccermom » Sun Jun 08, 2025 11:59 am

I believe that consulting another once sounds like a good idea but I'm going to ask you a different question. All of the options you mentioned are adding more and different chemo, treatments, etc. I don't mean to come off as insensitive so please don't take it that way. What does your mom want to do? It appears that she's been fighting this battle for 3 years now. Does SHE want to continue? I might suggest that you sit down with her and ask her what she wants to do. You indicated that she is feeling better right now and has more energy....likely because she's not using heavy duty chemo. Your mom needs to be the one ( and I'm not saying she isn't) to make the decision what is best for her. Ask the onc the tough question about the side effects of any next treatments. Before the appointment, you and your mom should have that hard talk (and perhaps you already have). More chemo and/or other treatments come with a tradeoff...how she feels...her quality of life. I've never been on anything like your mom has so I certainly have no experience with what she's going through. Chemo and radiation was difficult enough and my 9+ months of chemo/radiation/surgery was enough for me! I have, however, been a member of this board for almost 19 years and in that time, I've seen it happen where other members who have become close friends have said enough....sometimes surprising even their own family members! I had to even tell my husband at one point it was MY life...not his or the kids. Ive been on the other end as well....having to sit down with my own MIL and have that discussion with her...making sure that however she proceeded, it was her decision and not one brought on by pressure or guilt from her other children.
Please don't take my response as anything more than just a suggestion to talk with your mom and be blunt. Again, maybe you have had this discussion with her...and if so, that's great. She will make the decision that's best for her.
Wishing you both the best. Cancer is a tough journey for everyone.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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