My Current Protocol——-All Thoughts/Criticism Welcomed

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claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

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

Postby claudine » Mon Jun 13, 2022 1:21 pm

Thinking of you today prayingforccr, I hope you get good scan results XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

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 14, 2022 8:06 am

Sorry PCCR - You do know there is no cure for cancer right? There is however therapy to increase livelihood and some people with small mets Chemo does destroy it. Why are you so against SOC?

I truly understand its your prerogative and decision not to do SOC, but cancer is not curable, curative intent is not always an option, but increasing ones life for new therapies to come out is and option. Think about that. Are you scared to do Chemo?

Let me fill you in of how hard cancer is. Right now I have pain in my butthole and discharge from it of blood/mucus all day long, I have to wear diapers, even though I have an ostomy, this is because of tumor invasion of the rectal stump that is there. My left kidney ureter is being pressed by the tumor causing Hydroureteronephrosis which is a obstruction to free flow of urine from the kidney. I go to the bathroom to try and pee thinking I need to but nothing happens, it is very frustrating makes it hard to sleep. Cancer pain is not fun, I am on morphine tablets daily, flomax to help with peeing. I am 43 years old. Sitting down is aggravating, I am squirmy, my entire diaper is soiled all the time, so now I put tissue paper in between my butt and the diaper so I don't have to change the diaper. Believe it or not the only thing that is great is my Ostomy, of course I hate having one, but its giving me my life back. Please read this message in full and THINK, don't be so bullheaded with your thought process. Again most of the people on this site has been through alot, your just breaking the ice and your doing all this bullshit natural stuff that has no statistic that it works.

I was really rooting for you on the natural stuff, you gave us all hope, I was really expecting good results because of it, it would make me feel better to jump on your protocol and drop this shit chemo.

So many rich actors have died from cancer who have the disposable finance to go to Mexico and all these other countries that say they can cure cancer and they are still dead. Be more open minded. If I recall you are in Florida, if you ever want to talk man or meet up let me know.

Cancer is being treated as a chronic disease now, with chemo, just like diabetes and other chronic diseases. I know chemo sucks, surgery, ostomy, radiation, but I been through it all and 5.5 years later I am still hear alive.

This is all because I took a almost 5 month break from Chemo, so it progressed.

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.

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 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: 809
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

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

utahgal7
Posts: 201
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; 0.8; 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

MadMed
Posts: 216
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: 201
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; 0.8; 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

MadMed
Posts: 216
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

User avatar
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 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
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

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 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.
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

MadMed
Posts: 216
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

User avatar
beach sunrise
Posts: 1034
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
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

utahgal7
Posts: 201
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; 0.8; 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

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

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

Postby claudine » Thu Jun 16, 2022 5:41 pm

That's great, this looks like a very promising approach, I really hope it works for you!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

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

Immune rejection of cancer and the abscopal effect

Postby Peregrine » Fri Jun 17, 2022 3:30 am

prayingforccr wrote:“ I have been fortunate to successfully converge my radiobiology and clinical research interests in the care of many cancer patients. Specifically, in the past decade our group has demonstrated that local radiotherapy can contribute to immune rejection of cancer: in the presence of immune checkpoint blockade (anti-CTLA-4, anti-PDL-1) the irradiated tumor becomes an immunogenic hub, similar to a vaccine. Consistently some patients with metastatic tumors can then reject metastasis that were not irradiated, a mechanism called "abscopal effect". The contribution of localized radiotherapy significantly enhances the success of modern immunotherapy, offering an additional application to radiation, a standard and accessible anti-cancer therapy. With immunotherapy acquiring an important role in the management of most cancer patients, it is very exciting to be able converge radiotherapy as a powerful adjuvant to this approach.” -Dr Silvia Formenti

pfccr -
Thanks very much for posting this information about Dr. Formenti's cutting-edge research on radiotherapy and the abscopal effect. I have the feeling that this research topic will be of interest to a number of other members here.

Dr. Sylvia Formenti's publications


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