Chemo resistance

Please feel free to read, share your thoughts, your stories and connect with others!
skimom
Posts: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Chemo resistance

Postby skimom » Wed Jan 24, 2024 10:05 pm

Hello - does anyone have any suggestions on how to fight chemo resistance? I am now on FOLFIRINOX because FOLFOX and FOLFORI both failed. I have hope but feel like this one isn’t really working either. When speaking to my onc today, he didn’t really seem to have many options left for me. He’s hopeful we can find a trial but it’s a struggle due to previous RA.

So if we could somehow get this chemo to work again that would be amazing!
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
31
21
18
9/2023 Switch back to FOLFOX due to new lung nodules
11/23 FOLFOX fail CEA up to 62

User avatar
beach sunrise
Posts: 1109
Joined: Thu Mar 05, 2020 7:14 pm

Re: Chemo resistance

Postby beach sunrise » Thu Jan 25, 2024 3:06 am

Off the top of my head: andrographis, curcumin, ivermectin, metformin, polyphenols, terpenes (sp?). There are some TCMs in my notebook I will dig out for you to research also.
Unfortunately resistance happens. Is it MDR1 or 2 (Mine is MDR 1). Whats your eGFR, VEGF, HIF 1 levels? There may be more but can't think of them just now.
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

JP66
Posts: 42
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: Chemo resistance

Postby JP66 » Thu Jan 25, 2024 8:28 am

Male 58 y/o
TIIIbN+M1 - Stage IV (10/23) - 2 left common iliac lymph nodes metastatic
MSI - MSS; KRAS non-mutant
Modified Neo-adjuvant Therapy (FOLFIRINOX instead of FOLFOX)
tumor 7.4 cm from AV, moderately differentiated
12/23 - 27 treatments rad+Xeloda
03/24 6 FOLFIRINOX infusions
4/24 PET Scan and MRI - tumor gone, lymph nodes normal
5/30/24 Total Mesorectal Excision (TME) + lymphadenectomy of 2 left common iliac LN
6 rounds FOLFOX sched'd after surgery
CEA (10/23-04/24) 1.8,1.3,1.6, 1.8, 1.6

rp1954
Posts: 1872
Joined: Mon Jun 13, 2011 1:13 am

Re: Chemo resistance

Postby rp1954 » Fri Jan 26, 2024 12:19 pm

Our experience was that multiple formulas in useful amounts of potent choices were necessary to re-light chemo activity.
A little bit like peeling an onion to hit multiple pathways, avoid duds and interferences.
Most people do total guesswork, and hence usually have less effect.
How would you choose between 400 mg of curcumin and 13,000 mg? (Some MGUS patients can actually use 6 - 13 grams to stop their markers)
We built up history and improvements, then could swing multiple changes monitored with many parameters in fairly stable conditions.
But the most important is having some evidence of chemo turned "on", avoiding side effects, and not making continued mistakes.
Some improvements can be odd ball chemistry hits that exploit tissue defects. (e.g. a 6mm lung pellet turned to stone in a chemo-near calcium overload environment)
The literature shows continuous chemistry sometimes breaks resistance that heavier chemo cycles already failed.

We can't just randomly copy others working formula and expect it to instantly work, even if there is a lot of overlap.
Although I didn't see an actual CA199, your comment implied a much different CA199/CEA ratio, a somewhat different biology at work.
It's always best to just report at least one quantitative number rather than opinions on panels not part of their CRC education - a particular doctor is usually not specialized enough.
My wife's experience may reflect less grams of residual tumor load and adverse mutation from your chemo cycles but we did develop much of it with the PALN "mega"cluster in place during year 1 and activated after the 5FU dip for folic acid toxicity.

It's best to work things out with the blood tests - to see when chemo activity turns "on" and "off", what else improves, what doesn't, or even what deteriorates (e.g. liver functions, CBC fractions) for bad choices or trial failures.
The most useful bloodwork parameters varies somewhat between patients e.g. CA199 or LDH might be critically important to some vs biologically constant/absent and almost useless after 1-2 measurements.

My wife's spreadsheet tracked 25+ useful panels and markers for real time trials and corrections, so we could create useful changes pretty fast.
For you, if you tried to make an instant history on the biweekly and monthly bloodwork, some basics to list might be: date, CEA, MCV, ALP, rdw, WBC, RBC, platelets, Hgb, GGT (GGTP), 1-2 inflammation markers (e.g. ESR, hsCRP).
A fairly full liver suite baseline would be AST, ALT, ALP, GGT, LDH, bilirubin, PT/INR, AFP
Lest you think this is wildly burdensome, it was an incremental 15 minutes to review and plan after each new blood test vs 2 - 5 minute oncology with "standard" once we got it working. The effort is in development of the information and support base i.e. if std drs did my/their homework.

MCV, ALP, rdw, Hgb, WBC, RBC, platelets are all in the most basic CBC report with differentials. GGT is a less common liver function but should be monitored for HAI purposes.
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

JP66
Posts: 42
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: Chemo resistance

Postby JP66 » Sat Jan 27, 2024 11:38 am

RP,

Do you have any thoughts or opinions on Theracurmin instead of curcumin? I actually have a secondary condition that I have been battling for 7 years now and was already taking Theracurmin as part of my regimen. I dropped most of the supplements I was taking once I began treatment for cancer, but so far I have kept up with the Theracurmin, Pterostilbene, Taurine, and vitamin D with my oncologists blessing.

I'd be very interested in any links you have regarding curcumin and rectal cancer.

Thanks as always,

Joe

My Alternative Therapy for SCA1
Male 58 y/o
TIIIbN+M1 - Stage IV (10/23) - 2 left common iliac lymph nodes metastatic
MSI - MSS; KRAS non-mutant
Modified Neo-adjuvant Therapy (FOLFIRINOX instead of FOLFOX)
tumor 7.4 cm from AV, moderately differentiated
12/23 - 27 treatments rad+Xeloda
03/24 6 FOLFIRINOX infusions
4/24 PET Scan and MRI - tumor gone, lymph nodes normal
5/30/24 Total Mesorectal Excision (TME) + lymphadenectomy of 2 left common iliac LN
6 rounds FOLFOX sched'd after surgery
CEA (10/23-04/24) 1.8,1.3,1.6, 1.8, 1.6

skimom
Posts: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: Chemo resistance

Postby skimom » Mon Jan 29, 2024 2:32 am

Thank you beach sunrise, JP66 & rp1954! Really appreciate the input.

rp1954, I am always in awe at your knowledge and understanding of this crazy disease & how do best treat it. I read through your response multiple times and have done my best to understand what you say. I apologize for my lack of understanding.
rp1954 wrote:It's best to work things out with the blood tests - to see when chemo activity turns "on" and "off", what else improves, what doesn't, or even what deteriorates (e.g. liver functions, CBC fractions) for bad choices or trial failures.


Got it on the spreadsheet. I will go back and create that from the beginning. I wasn’t doing any supplements prior to having the HAI installed and that is when the chemo was working so I don’t think it will help much but it will be good to have the numbers on paper. Since the chemo resistance started while doing the supplements I am currently taking assume it’s best to get with my ND to discuss others to try? I am just at a loss when you say “when chemo activity turns on and off” ? See what ND wants me to try next and see if my CEA goes down after the next chemo? I have not had CA199 tested in a long time because it was never raised, only CEA which has been an extremely accurate marker for me.
And thanks for the tip on GGT. I will make sure they add that to my next labs.


Thanks again for taking the time to respond in such detail. I greatly appreciate all of your help
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
31
21
18
9/2023 Switch back to FOLFOX due to new lung nodules
11/23 FOLFOX fail CEA up to 62

rp1954
Posts: 1872
Joined: Mon Jun 13, 2011 1:13 am

Re: Chemo resistance

Postby rp1954 » Mon Jan 29, 2024 6:41 pm

JP66 wrote:...Do you have any thoughts or opinions on Theracurmin instead of curcumin? I actually have a secondary condition that I have been battling for 7 years now and was already taking Theracurmin as part of my regimen. I dropped most of the supplements I was taking once I began treatment for cancer, but so far I have kept up with the Theracurmin, Pterostilbene, Taurine, and vitamin D with my oncologists blessing.

I don't have any experience with pterostilbene but some papers suggested that a choice between pterostilbene and resveratrol needed to be made for interference, with both having impressive claims.
Theracurmin kind of raises my hackles on figure of merit based pricing, where I tend to think in terms of percents rather than multiples of actual advantage without my own data. I haven't seen much follow up the past dozen years. One MD Anderson trial just disappeared after 2015.
The fine, more constant data that would be "easier" for us on continuous immunochemo doing full inflammation and liver panels, might be more difficult for cycle based heavy chemo that bludgeons blood data.

My Alternative Therapy for SCA1
...too much red wine (as in 500 ml to 750 ml almost every day for 20 years

Wow, I'd be wary of the "dinner table heredity effects" of acetaldehyde on ALDH, etc with any heredity feature that had liver or neurological implications.
Back 60-80 years ago, some industrial hygienist realized that formaldehyde and acetaldehyde exposures could be improved with molybdenum and higher doses of vitamin C and B complex. There are longer supplement lists for related metabolism challenges.
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

rp1954
Posts: 1872
Joined: Mon Jun 13, 2011 1:13 am

Re: Chemo resistance

Postby rp1954 » Mon Jan 29, 2024 6:48 pm

skimom wrote: Got it on the spreadsheet. I will go back and create that from the beginning.
I wasn’t doing any supplements prior to having the HAI installed and that is when the chemo was working so I don’t think it will help much but it will be good to have the numbers on paper. Since the chemo resistance started while doing the supplements I am currently taking assume it’s best to get with my ND to discuss others to try? I am just at a loss when you say “when chemo activity turns on and off” ? See what ND wants me to try next and see if my CEA goes down after the next chemo? I have not had CA199 tested in a long time because it was never raised, only CEA which has been an extremely accurate marker for me.
And thanks for the tip on GGT. I will make sure they add that to my next labs

Probably a big lost opportunity is not sharing spreadsheet data and baseline history here. It's really hard to discuss around unknown data.
In other people's shoes, I'd at least want to save time and money here on the easy background stuff and question formation before spending my time and money professionally on very brief comms. The other problem with interviews is information overload, both ways, in any single conversation with missed details if not big opportunities, then "see ya" next month.
Chemo resistance is a cumulative issue that needs serial steps the further it gets so no promising magic but first is seeing where things are. Then is getting action on the necessary steps.
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 32 guests