mCRC Stage IV mets to LV and LN - what can we do more?

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beach sunrise
Posts: 1089
Joined: Thu Mar 05, 2020 7:14 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby beach sunrise » Tue Mar 07, 2023 6:56 pm

Test failed due to not enough cancer cells in the radiated tumour.
Nagourney was an ass to be blunt so no I did not consult with him further. He basicly thought he would own my cancer and treatment and nothing up for discussion.
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
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Mar 07, 2023 7:16 pm

Ok, thanks for feedback.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

rp1954
Posts: 1867
Joined: Mon Jun 13, 2011 1:13 am

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby rp1954 » Fri Mar 10, 2023 3:11 pm

We've had a lot of back and forth at the Infection and Markers thread on data, conditioning, sampling and (y)our setups, with the shift into Folfiri++.
With the ++ added to Folfiri, you're trying to incrementally improve Folfiri's performance and side effects, and get a direct read of benefit and toxicity. If Folfiri is problematic, maybe shift to ADAPT +++/++++. With high enough quality actions and good fortune, turn your setup into a data, decision, and improvements machine.

So where are you now, and where are you aiming?

Plan A
Try to gain some incremental improvements, some measurable responses, and stabilize your wife's situation as long as possible with higher quality life. Try to maintain(Folfiri) or improve (ADAPT?) basic immune functions. Buy time to find and build decisive opportunities, see Plan B.

Plan B
Try to find, and execute on, 1 or 2 major (giant) steps that create a major breakout from the usual prognosis, and palliative thinking.
Normally gaining an unusual or advanced surgery and follow on treatment is my first hope.
Even at this late stage, other members here have pulled miracles out of a dire situation without surgery, see sleen (TIL) and terminal tx reversals with Keytruda trials and it's clinical introduction. Also Jimmy Carter's brain mets are in this category, going terminal 8 years ago.

If you don't see immediate, huge response with Folfiri toward a complete response, your wife's likely options center around finding a thermonuclear grade immune treatment or magic bullet chemistry.
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

roadrunner
Posts: 480
Joined: Sun Jan 12, 2020 8:46 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby roadrunner » Fri Mar 10, 2023 3:34 pm

IMO that’s a clear, helpful strategy post, rp1954. Thanks! One thing I’d add:

IM64: If you’re interested and able to do so, research into clinical trials should not be delayed. Members have had remarkable, late(er)-stage success there, including prayingforccr’s recent promising results. Clinical trials are their own separate discipline for us patients, and it can be difficult to identify, qualify for, or manage them to our optimal interests, but they can also be literal lifesavers, and cancer therapy is moving much faster now than it did in the past. Just something to think about. [Sorry if someone discussed this above or in another thread, just wanted to make sure it was mentioned next to rp1954’s post.]
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Fri Mar 10, 2023 5:24 pm

Thank you rp1954 for summarizing the results and the proposed plan.

Our goal #1 is stop the progression (if it was, because the CT scan says no) and reverse CEA trend from Up to Down.

Goal #3 is a "Plan B", and we absolutely agree with it. We understand it will not be easy to find doctor(s) who will see more than just palliative. Now they all become silent when we start to talk about any future treatment plans. We're not ready to agree with it.
This stage will take time, and to get that time we should to make right choice in step 2.

Step #2 is questionable for me. There are two ways:
a. Stay with the Folfiri as long as possible, either before Folfiri stops working or the side effects become intolerable. Leave Xeloda for third line treatment.
b. Switch to Xeloda right away after step 1 and stay with the Xeloda as long as possible. Have the possibility to return to Folfiri if something goes wrong.

My main doubt with "a" is Folfiri is too heavy to continue with it long time and maintain immune system in a more or less working condition. And probably Xeloda chances will be minimal after a long time with Folfiri. But there's a chance to get a good response with Folfiri.

With Xeloda is only one question - how good will be response and how long it will work. We'll never know if not try. Our oncologist doesn't mind to switch to Xeloda if we want. He is more pessimistic about Xeloda vs Folfiri, but he never count all our +++ we add.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Fri Mar 10, 2023 5:39 pm

roadrunner wrote:If you’re interested and able to do so, research into clinical trials should not be delayed.

Thanks for reminding about trials. I definitely need to keep an eye on that to not miss possible options.

One more thought about clinical trials - when I asked our oncologist about it, he said its too early. He suggest to think about trials when all official treatment is done.
I'm interesting in experienced people opinion - Are you agree with that?
Thanks
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

roadrunner
Posts: 480
Joined: Sun Jan 12, 2020 8:46 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby roadrunner » Fri Mar 10, 2023 8:13 pm

From NCI (National Cancer Institute):

“Any time you or a loved one needs treatment for cancer, clinical trials are an option to think about. Trials are available for all stages of cancer. It is a myth that they are only for people who have advanced cancer that is not responding to treatment. Ask your doctor about clinical trials that might be an option for you. You can also look for trials yourself by visiting Find NCI-Supported Clinical Trials.”

Moreover, you say your doctors—presumably including the one who’s discouraging consideration of trials—“go silent when you talk about future treatment plans.” That tells you all you need to know about his/her perspective. In my view, research and consideration of options are great ideas in this circumstance. They do involve significant time and effort, but they can be a valuable part of an overall strategy. Whether you choose to go that way or not. Information and choices are your friends. Why shut them out?
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Fri Mar 10, 2023 8:44 pm

It makes sense. Thanks for your opinion and input!
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

Rock_Robster
Posts: 1038
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby Rock_Robster » Fri Mar 10, 2023 8:48 pm

IM64 wrote:
roadrunner wrote:If you’re interested and able to do so, research into clinical trials should not be delayed.

Thanks for reminding about trials. I definitely need to keep an eye on that to not miss possible options.

One more thought about clinical trials - when I asked our oncologist about it, he said its too early. He suggest to think about trials when all official treatment is done.
I'm interesting in experienced people opinion - Are you agree with that?
Thanks

Just to add to this one - I’m working with a couple of trial doctors/researchers, and their general rule is that any kind of progression on any line of treatment is reasonable point to consider enrolling in a trial. They all have different eligibility criteria - some you can’t have had too much chemo, others you have to have had a lot of chemo - so it’s good to always be watching this. The ‘progression’ trigger is mainly that most PIs will be reluctant (ethically) to stop a treatment that is working in order to pursue an experimental option, particularly early-phase trials.

Good luck,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

rp1954
Posts: 1867
Joined: Mon Jun 13, 2011 1:13 am

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby rp1954 » Fri Mar 10, 2023 8:57 pm

A boy scout ("be prepared") would still be ready to make the ADAPT/capecitabine switch after 1-2 cycles Folfiri, with capecitabine + celecoxib in hand.

How easy is it to go behind his back to find another local oncologist without him finding out? E.g. so nationally/provincially consolidated new office notifies old office, especially at the point of the xeloda prescription? Sooner or later?

He suggest to think about trials when all official treatment is done.

First, I'd get clarification of the likely official treatment series in Canada/Ontario. In 2010, the lack of reimbursed provincial choices could be pretty f'g ugly. E.g. is your wife even legally eligible to restart Avastin or a more advanced antibody.?

Second, does the health scheme pay for colony stimulating drugs like Neulasta?

Also if xeloda stumbled for any reason, is a regular Canadian able to restart Folfiri or Folfoxiri with avastin or a potentially better biosimiar after a chemo pause? Most of the other official 3rd line drugs made me comfortable with DIY off label.

I might not be too thrilled about official Canadian options, but I would know them now. When you wait and depend on std drs and administrators, especially if they aren't giving answers, you're being controlled and drawn into a black hole.

And I'd learn the ropes to at least identify the major trial options this year.
You're going to be busy for a while.
Last edited by rp1954 on Fri Mar 10, 2023 9:34 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 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

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mobrouser
Posts: 174
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby mobrouser » Fri Mar 10, 2023 9:30 pm

As far as I know Ontario Health Care doesn't pay for Neulasta, however I was able to receive Neupogen covered by OHIP. I had to file some forms at my cancer centre, but it was relatively easy.

I haven't tried but I suspect that seeking a new oncologist under OHIP would be troublesome unless you have moved a significant distance from your current location.
CC Dx 102017 age 58
Lap. right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Fri Mar 10, 2023 10:24 pm

Rock_Robster wrote:Just to add to this one - I’m working with a couple of trial doctors/researchers, and their general rule is that any kind of progression on any line of treatment is reasonable point to consider enrolling in a trial. They all have different eligibility criteria - some you can’t have had too much chemo, others you have to have had a lot of chemo - so it’s good to always be watching this. The ‘progression’ trigger is mainly that most PIs will be reluctant (ethically) to stop a treatment that is working in order to pursue an experimental option, particularly early-phase trials.

Thanks Rob, I'll keep that in mind
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Fri Mar 10, 2023 10:47 pm

rp1954 wrote:A boy scout ("be prepared") would still be ready to make the ADAPT/capecitabine switch after 1-2 cycles Folfiri, with capecitabine + celecoxib in hand.

Actually celecoxib is already in hand (prescribed for me by 3rd party doc). Need to research about capecitabine. As I understand it may be needed to regulate dose above standard and avoid "free weeks".

rp1954 wrote:How easy is it to go behind his back to find another local oncologist without him finding out? E.g. so nationally/provincially consolidated new office notifies old office, especially at the point of the xeloda prescription? Sooner or later?

I'm afraid officially it's not real to have 2 oncologists. We even don't have integrative doctors in Canada. I think (gues) easier to find drugs and use own protocol.

rp1954 wrote:First, I'd get clarification of the likely official treatment series in Canada/Ontario. In 2010, the lack of reimbursed provincial choices could be pretty f'g ugly. E.g. is your wife even legally eligible to restart Avastin or a more advanced antibody.?

We asked and got answer - if drug was stopped due to progression (stop worked) or intolerable side effects (which are listed in Drug Monograph), it cannot be restarted.
For example we stopped Avastin due to bleeding and Folfox due to progression (according to the oncologist) so both are closed for us.

rp1954 wrote:Second, does the health scheme pay for colony stimulating drugs like Neulasta?

Government pays only for approved drugs. Each province has their own list of approvals. Neulasta (pegfilgrastim) approved in Ontario for "Decrease the incidence of infection (i.e. febrile neutropenia) in patients with non-myeloid malignancies receiving myelosuppressive antineoplastic drugs."
Not sure if this applies to us - need to ask an oncologist.

rp1954 wrote:Also if xeloda stumbled for any reason, is a regular Canadian able to restart Folfiri or Folfoxiri with avastin or a potentially better biosimiar after a chemo pause? Most of the other official 3rd line drugs made me comfortable with DIY off label.

That was our main question for onc at the last meeting. Short - officially not. If we stop Folfiri to switch to Xeloda, Folfiri is done. But... probably we can just pause Folfiri and use Xeloda as a maintenance for that time. Finish pause -> continue Folfiri - that is one way. Another one is as yours - start Folfiri second time, but with something else, and it can be considered as a new line/treatment. We discussed these options and he promised to clarify.

rp1954 wrote:I might not be too thrilled about official Canadian options, but I would know them now. When you wait and depend on std drs and administrators, especially if they aren't giving answers, you're being controlled and drawn into a black hole.

1000%. That's the reason why I'm trying to get out of this circle!

rp1954 wrote:And I'd learn the ropes to at least identify the major trial options this year.

This is my main concern about trials - we may be limited with all ++++ we are doing.
But I agree with roadrunner - being informed is a plus. Short research show possible trials that can be part of existing plan. For example Living Donor Liver Transplantation for Unresectable Colorectal Cancer Liver Metastases (unfortunately we are not candidate due to lung mets)
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Sat Mar 11, 2023 7:52 am

mobrouser wrote:I haven't tried but I suspect that seeking a new oncologist under OHIP would be troublesome unless you have moved a significant distance from your current location.

Our oncologist often repeats you are always welcome to find another MD. I believe he will be happy if we move to another onc. And we have to ask him for a referral to another docs. We already asked a couple referrals for second opinion, but no one contacted us back. Looks like most of them want to "easy case" with likely happy end.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

rp1954
Posts: 1867
Joined: Mon Jun 13, 2011 1:13 am

Positioning for Plan B

Postby rp1954 » Fri Mar 17, 2023 3:39 pm

IM64 wrote:
mobrouser wrote:I haven't tried but I suspect that seeking a new oncologist under OHIP would be troublesome unless you have moved a significant distance from your current location.

Our oncologist often repeats you are always welcome to find another MD. I believe he will be happy if we move to another onc.

My innermost self almost always says "ok", perhaps too readily, but that is a situational resource problem solved. Different situations, cities, countries, rules, sizes and availability matter.

we have to ask him for a referral to another docs. We already asked a couple referrals for second opinion, but no one ...

Sounds like you need some escape strategies and maneuver capabilities, especially for plan B, to breakout of the narrow, channelized network. For you, OHIP; for us, stingy HMOs.

One key to this may be how far you are willing and able to go (bi)weekly, monthly, or even once. e.g. NYC, Boston, Houston, etc. Another major key is what you can do remotely - research, telephone, (international) telemedicine, and, at home.

Can you elaborate more on these factors because it affects finding, focusing on, choosing and doing plan B options.
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


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