My Current Protocol——-All Thoughts/Criticism Welcomed

Please feel free to read, share your thoughts, your stories and connect with others!
prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Wed Jun 15, 2022 8:08 pm

All of the lymph nodes indicated drain the lungs :(
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

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Thu Jun 16, 2022 12:01 pm

Feeling much better after a short meeting with Dr Chachoua

Immunotherapy/sbrt to begin in July

Goal is remission.
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

Claudine
Posts: 699
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
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: 370
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Thu Jun 16, 2022 10:39 pm

“ 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
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
Peregrine
Posts: 100
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

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

Re: Immune rejection of cancer and the abscopal effect

Postby prayingforccr » Sat Jun 18, 2022 8:57 am

Peregrine wrote:
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



https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6351396/

https://www.frontiersin.org/articles/10 ... 29250/full
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: 673
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
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"

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Jun 19, 2022 6:29 am

beach sunrise wrote:Onc seems very up on CRC treatments.
Will you continur any supplements?


I am going to continue with the fenbendazole, black seed oil (will increase), curcumin, and vitamin e.

And the ivermectin.

My reading indicates any cbd/thc product is a huge no no when doing immunotherapy.
Last edited by prayingforccr on Sun Jun 19, 2022 8:02 am, edited 1 time in total.
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
Peregrine
Posts: 100
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 ...


prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Jun 19, 2022 8:01 am

My feeling has been that when I restart treatment, that it is the beginning of the end.
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

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Mon Jun 20, 2022 1:15 pm

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’m going to be doing 6 sessions of sbrt over a two week period.

The radiation is targeting just one of the lesions.

I am unsure of the schedule for the opdivo/yervoy, but I do know the first dose of opdivo will be given to me one day prior to my initial sbrt session, and will be ongoing.

I am going to continue with the fenbendazole, black seed oil (will increase), curcumin, and vitamin e.

And the ivermectin.
Last edited by prayingforccr on Mon Jun 20, 2022 1:39 pm, edited 1 time in total.
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

roadrunner
Posts: 272
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: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/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 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Mon Jun 20, 2022 1:41 pm

roadrunner wrote: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?


Dr Chachoua stressed nothing steroidal was to be taken.

My reading indicates NO cbd/thc.

The others checkout as fine, but I will run it past both doctors.

The ivermectin is reported to turn cold tumors “hot” which would be very desirable in this instance.

Vitamin e https://www.mdanderson.org/newsroom/stu ... 38956.html

Curcumin https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8415504/
Last edited by prayingforccr on Mon Jun 20, 2022 2:43 pm, edited 1 time in total.
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

roadrunner
Posts: 272
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: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/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 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign

prayingforccr
Posts: 370
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Mon Jun 20, 2022 2:45 pm

roadrunner wrote: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!


Thanks, rr.

I really, really hope it works.

I’m not sure what to hope for, but when I asked Dr Chachoua if this could get me to remission his answer was “That’s why we’re doing this, dude”.

Dare to dream.

I haven’t seen anything encouraging with MSS and opdivo/yervoy, but there are currently clinical trials very similar to what I will be doing.

If this doesn’t work, off to CHIPSA

At that point, I will have done everything possible to my satisfaction, and Ill huff a bag full of nitrogen after an internalized farewell tour.
If it’s my time, it’s my time.
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


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



Who is online

Users browsing this forum: No registered users and 6 guests