My Current Protocol——-All Thoughts/Criticism Welcomed

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Sat Jun 18, 2022 6:53 pm

Onc seems very up on CRC treatments.
Will you continur any supplements?
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

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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

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

Postby Peregrine » Sun Jun 19, 2022 7:11 am

prayingforccr wrote:...My reading indicates any cbd/thc product is a huge no no when doing immunotherapy.

Yes indeed, and here are some of those references ...


roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Mon Jun 20, 2022 1:35 pm

This is probably obvious given how much you research things, but since it’s clear that you need your immune response to be optimal for this to have its best chance to work, have you discussed with Dr. Formenti any immunosuppressive effects of any supplements/alternative therapies you are continuing and how best to optimize T cell production? Also, does she use proton radiation, or conventional radiotherapy?
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

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Mon Jun 20, 2022 2:18 pm

Sounds good. As you know, I am a proponent of the strategy of extending survival to take advantage of developing technologies/treatments (especially given how promising many of these are right now), and it’s clear that what you’re doing here is widely regarded as a very promising such treatment indeed. Some authorities regard it as analogous to the vaccine approach, another of the leading candidates. I wish you the best with it!
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

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

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

Postby Rock_Robster » Tue Jun 21, 2022 7:15 am

Isn’t vitamin E radioprotective? It was one of the few things my rad onc was very clear that I shouldn’t take.

Good luck for the treatment!
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

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Tue Jun 28, 2022 12:41 am

If you forgo treatment plan, might consider alt again.
High dose "C", along with Resveratrol either high dose or IV, high dose olive leaf extract to keep C levels optimal between infusions, Ivermectin,xeloda, high dose milk thistle, ect. 0 sugar as it ferments used as food for cancer.
I have read mutations have underlying protein synthesis in codons that either stop or are damaged and these things help. The liver is very important in all this.
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

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Tue Jun 28, 2022 8:03 am

PFCCR - Keep in mind a lot of people do SOC not just to push survivability, but to control cancer pain symptoms. When you start having cancer pain you might sing a different tune. You are so early in this process and have a lot of options available to you. Listen to your doctors, we all know going into this cancer might not be curable but even with the nasty effects of treatment you can still have a good Quality of Life. When I get treatment it sucks and it beats me down for 5-6 days and hits horrible, but then for about 2.5 weeks after that I am more normal and feel better.
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.

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

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

Postby MadMed » Thu Jul 14, 2022 6:47 pm

That’s awesome! We know from someone on this board that was amongst the first to do TIL and it worked for them. I hope it works for you too!
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

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Sat Jul 16, 2022 11:27 pm

Yes, curative goal!!!
Please keep us updated.
You have been on my mind.
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

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Mon Jul 18, 2022 3:55 pm

How are you planning your death? Euthanasia?
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.

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Mon Jul 18, 2022 4:05 pm

Call this number buddy you need help:
https://988lifeline.org/talk-to-someone-now/

I really hope the TIL works for you or whatever it is your doing, but giving up when you have a lot of options is a big deal and very bad for this forum and people that are fighting with everything they got and doing everything you knock down like SOC, Ileostomy and pretty much anything the doctors suggest other then natural.

Your doctors entertaining all these alternative things makes me wonder if you are in the best care, or just doing what your telling them. I am sorry if I am coming across harsh, but you seem like the type of guy who doesn't want to beat around the bush.
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.

utahgal7
Posts: 201
Joined: Fri Sep 11, 2020 12:04 pm

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

Postby utahgal7 » Mon Jul 18, 2022 4:58 pm

prayingforccr:

I hope the TIL trial works for you. I agree with Riki that you should explore all options before giving up.

Not to sound like a jerk but how are you getting access to all of these trials? You mention a new trial every week. All of the trials that I have researched have a requirement to exhaust all SOC options first (FOLFOX, FOLFIRI, etc.)

I don't want to sound harsh either....your doctors seem pretty flexible with the alternative supplements that you have taken. All of the oncologists that have provided my care would be strongly opposed to ANY natural treatments.

I really hope you have good luck with your clinical trial.


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; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Mon Jul 18, 2022 5:18 pm

utahgal7 wrote:prayingforccr:

I hope the TIL trial works for you. I agree with Riki that you should explore all options before giving up.

Not to sound like a jerk but how are you getting access to all of these trials? You mention a new trial every week. All of the trials that I have researched have a requirement to exhaust all SOC options first (FOLFOX, FOLFIRI, etc.)

I don't want to sound harsh either....your doctors seem pretty flexible with the alternative supplements that you have taken. All of the oncologists that have provided my care would be strongly opposed to ANY natural treatments.

I really hope you have good luck with your clinical trial.


Paige


Paige - your right, I totally forgot about the fact that trials require using up the SOC options first. Most Trials that I can do require me to make sure I shrink do whatever I can to beat up the tumor with SOC before I can even do a trial.

I still wish him good luck and he will probably respond that his doctors have Clout which makes no sense, if this is really Memorial Sloan Kettering they wouldn't be farting around like this. To much liability.
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.

utahgal7
Posts: 201
Joined: Fri Sep 11, 2020 12:04 pm

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

Postby utahgal7 » Tue Jul 19, 2022 8:09 am

Riki,

I am genuinely happy for anyone that has a chance for a cure by participating in a clinical trial or alternative therapy, etc. Cancer is awful...However, there are individuals on here that are fortunate to be able to travel to various locations multiple times to participate in treatments. I don't know about you but inflation has hit my family hard. I am over here trying to figure out how to pay for $5.00 a gallon gas and feed my kid much less think about paying for cancer.

Just saying!
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; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Tue Jul 19, 2022 9:36 am

utahgal7 wrote:Riki,

I am genuinely happy for anyone that has a chance for a cure by participating in a clinical trial or alternative therapy, etc. Cancer is awful...However, there are individuals on here that are fortunate to be able to travel to various locations multiple times to participate in treatments. I don't know about you but inflation has hit my family hard. I am over here trying to figure out how to pay for $5.00 a gallon gas and feed my kid much less think about paying for cancer.

Just saying!



UtahGal - I hear you on all of that. The economy is a whole other story and with Cancer affecting me the way it is I worry about my family handling financial situations and other things that I mainly been doing as the breadwinner, I definitely been involving my wife a lot more in things and covering all the bases if anything happens to me.

I am also genuinely happy for any options other than standard of care (SOC) but usually major cancer centers like Memorial Sloan Kettering doesn't beat around the bush about these things and with a rising CEA everytime tested per PFCCR not doing SOC to me might be a mistake especially since the natural stuff there is less statistic on that vs SOC.

Just my 2 cents. I am more annoying by the giving up behavior and concerns for others users reading these post and losing hope.

Riki
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.


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