My Current Protocol——-All Thoughts/Criticism Welcomed

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Rikimaroo
Posts: 420
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby Rikimaroo » Tue Jun 14, 2022 8:34 am

I updated my post with a lot more information. opdivo/yervoy this is good, I hope it works.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Claudine
Posts: 698
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby Claudine » Tue Jun 14, 2022 9:35 am

I'm so sorry your alternative protocol didn't work out, pfccr, albeit not completely surprised - when you see that even pure poison (aka chemo) is often not enough... BUT it seems like you've got a good plan in place, SBRT works very well on lung mets. I am not familiar with opdivo/yervoy, hopefully you get good response from that. Sending positive thoughts your way XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

prayingforccr
Posts: 363
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Tue Jun 14, 2022 10:03 am

Guys……THANK YOU FOR ALL THE SUPPORT

Will continue to update.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

utahgal7
Posts: 86
Joined: Fri Sep 11, 2020 12:04 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby utahgal7 » Tue Jun 14, 2022 11:36 am

prayingforccr:

Wow, that's tough. I was hoping the alternative treatments would help you. Based on your previous posts, it seems like the alternative treatments maybe worked for 6 months (???) for you. There are so many different pathways for cancer to spread that it seems almost impossible to target all of them (especially in cancer that has already metastasized). It seems like you have a good plan in place with SBRT and Opdivo/Yervoy.

Again, I am sorry for the disappointing results. Keep the faith. We are all in this fight together.


Take care of yourself,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

MadMed
Posts: 164
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby MadMed » Tue Jun 14, 2022 11:51 am

Glad to hear there's a plan forward pfccr. I sincerely hope it produces good results.

Rikki! I hope things work out, thank you for sharing your fight, it is inspiring. I know that and a nickel does not buy you anything, but it has an impact on others. I am not an optimist by nature but it feels that big changes happening in CRC, new treatments, we may be on the cusp of something big!
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

utahgal7
Posts: 86
Joined: Fri Sep 11, 2020 12:04 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby utahgal7 » Tue Jun 14, 2022 12:38 pm

MadMed,

I agree there are big changes happening in CRC. It would be great if researchers can find new uses for existing drugs to prime the immune system in MSS patients, so immunotherapies could work better. Currently, there is a trial underway at the City of Hope testing regorafenib, ipilimumab, and nivolumab in MSS CRC that has progressed on prior treatments. I am super excited to see the results of this trial.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

MadMed
Posts: 164
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby MadMed » Tue Jun 14, 2022 12:54 pm

Thank you Utahgal, I found the link for it:
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2020-01818&r=1

It would be awesome to extend immunotherapy to MSS!
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

prayingforccr
Posts: 363
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Tue Jun 14, 2022 4:30 pm

This is essentially what I am doing beginning in July:

https://clinicaltrials.gov/ct2/show/NCT04575922
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

User avatar
beach sunrise
Posts: 666
Joined: Thu Mar 05, 2020 7:14 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby beach sunrise » Tue Jun 14, 2022 9:17 pm

Man! I was hoping for a good scan based on what you were doing.
I know it is deflating and depressing but you still have a handle on it because you have another plan.
That's a very good thing!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby Rock_Robster » Tue Jun 14, 2022 9:41 pm

Maybe there’s a middle ground here. I’ve done a fair bit of chemo and agree it’s no life from now until the end, whenever that is. But in the non-curative setting it also doesn’t necessarily make sense to just throw full-blown chemo at it anyway. Some people with stage IV disease can stay stable on Xeloda+Avastin for years, with very good quality of life. This is my next plan if I have an (unresectable/ablatable) recurrence/spread. And maybe combining capecitabine or UFT with your existing protocols could be what makes the difference. Point is, you don’t know until you try - and if you hate it you can stop.
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

prayingforccr
Posts: 363
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Wed Jun 15, 2022 4:13 am

I am definitely making plans to get my affairs in order and end this fight at a time of my choosing should the immunotherapy not work out.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

MadMed
Posts: 164
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby MadMed » Wed Jun 15, 2022 10:02 am

prayingforccr wrote:This is essentially what I am doing beginning in July:

https://clinicaltrials.gov/ct2/show/NCT04575922


Wow, this is run out of Mass General here in Boston and it seems to be at the cutting edge of treatment. It would be awesome if it worked for you like the other MSI trial. Please let us know how it goes.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

prayingforccr
Posts: 363
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby prayingforccr » Wed Jun 15, 2022 10:03 am

MadMed wrote:
prayingforccr wrote:This is essentially what I am doing beginning in July:

https://clinicaltrials.gov/ct2/show/NCT04575922


Wow, this is run out of Mass General here in Boston and it seems to be at the cutting edge of treatment. It would be awesome if it worked for you like the other MSI trial. Please let us know how it goes.


I am SO GRATEFUL that this is available to me.

Will it work? Who knows?

Side effects look nasty, but it’s worth a shot.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

User avatar
beach sunrise
Posts: 666
Joined: Thu Mar 05, 2020 7:14 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby beach sunrise » Wed Jun 15, 2022 11:37 am

Since your weight is really good, fasting during might be of benefit. It puts your body in protective mode.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

utahgal7
Posts: 86
Joined: Fri Sep 11, 2020 12:04 pm

Re: My Current Protocol——-All Thoughts/Criticism Welcomed

Postby utahgal7 » Wed Jun 15, 2022 2:51 pm

prayingforccr:

What are doing to tame inflammation? Have you had a c-reactive protein test recently? As you know, inflammation drives cancer, especially colorectal. In my case, whenever I have high inflammation, my lung nodules grow and my CEA rises. I know not everyone is the same. Just thought I would mention inflammation.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)


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