My Current Protocol——-All Thoughts/Criticism Welcomed

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Rikimaroo
Posts: 421
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: 86
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; 0.9; 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)

Rikimaroo
Posts: 421
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: 86
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; 0.9; 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)

Rikimaroo
Posts: 421
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.

MadMed
Posts: 166
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

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

Postby MadMed » Tue Jul 19, 2022 9:54 am

I hear you Riki on the giving up part. It bothers me too, but i learned 2 things through this experience. One is I have a lot of anger, well more than usual. So much so that I started therapy, odd since I was never a big believer but it has at least helped me sort out my feelings. Apparently losing control and facing death will make one angry :shock:

Second is that our path is lonely and entirely our own. Sure, we lost some friends after being diagnosed. Maybe they weren't good friends, maybe they don't know how to deal. Some of us have excellent caregivers, some less so, some are abandoned by their friends and family. In the end, we will walk this path lonely because it is a lonely experience.

I try not to give into the anger and project my own on others. I am disappointed to hear that pfccr does not want SOC, i hear him when he says chemo was invented in 1957, that's true. I think it would be awful to give up. But those feelings are my own and not his burden. pfccr has had his own journey and is emotionally in a place where that's his perspective.

I encourage him to follow any path that can bring better health. I am happy every time there's a new possibility of treatment. I imagine his doctors hear him and understand his reluctance to go back to chemo. Some oncologists will try other things if the patient has decided on a path. Also not every clinical trial is for last line, some are specifically designed for early and second line crc. This is goodness, we saw that with the dostarlimab MSI first line trial. All MSI patients were NED without chemo/rad/surgery.

For my part, i was "educated" early on chemo. I was complaining to a stage 4 CRC friend and she told me I should have more respect. Thousands of people dedicated their lives to refining and countering side effects. It worked really well for me. But I will not ignore the collateral damage it does. I hope some day (soon) we will not have to go through chemo, but given where we are, i will take it. And whatever else my oncologist thinks will help me.
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

Rikimaroo
Posts: 421
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Tue Jul 19, 2022 10:26 am

MadMed wrote:I hear you Riki on the giving up part. It bothers me too, but i learned 2 things through this experience. One is I have a lot of anger, well more than usual. So much so that I started therapy, odd since I was never a big believer but it has at least helped me sort out my feelings. Apparently losing control and facing death will make one angry :shock:

Second is that our path is lonely and entirely our own. Sure, we lost some friends after being diagnosed. Maybe they weren't good friends, maybe they don't know how to deal. Some of us have excellent caregivers, some less so, some are abandoned by their friends and family. In the end, we will walk this path lonely because it is a lonely experience.

I try not to give into the anger and project my own on others. I am disappointed to hear that pfccr does not want SOC, i hear him when he says chemo was invented in 1957, that's true. I think it would be awful to give up. But those feelings are my own and not his burden. pfccr has had his own journey and is emotionally in a place where that's his perspective.

I encourage him to follow any path that can bring better health. I am happy every time there's a new possibility of treatment. I imagine his doctors hear him and understand his reluctance to go back to chemo. Some oncologists will try other things if the patient has decided on a path. Also not every clinical trial is for last line, some are specifically designed for early and second line crc. This is goodness, we saw that with the dostarlimab MSI first line trial. All MSI patients were NED without chemo/rad/surgery.

For my part, i was "educated" early on chemo. I was complaining to a stage 4 CRC friend and she told me I should have more respect. Thousands of people dedicated their lives to refining and countering side effects. It worked really well for me. But I will not ignore the collateral damage it does. I hope some day (soon) we will not have to go through chemo, but given where we are, i will take it. And whatever else my oncologist thinks will help me.


Thanks MadMed - I agree so much with what you say. I made so much mistakes in the beginning and also know the path of feeling lonely. No matter how hard loved ones try to help they know they will never relate to what your going through. I just trying to make sure mistakes are not made here, I feel like opportunities can be missed and helping PFccr is my ultimate goal. Chemo sucks I am on it 2 weeks right now to try and beat my cea/cancer back down. I don't want to highjack PFCCR thread too much, I support him, just got to be careful with the suicidal comments without exhausting important options. I know chemo is old, unfortunately there is way more stats on chemo/soc then natural, I wish natural curative intents approach would have more stats. It's like hidden. PFCCR has contributed so much with this thread in regards to his treatment, it gives hope, but pull back on I rather die then do SOC, or get an ileostomy, be considerate of others that have done that approach like we are with his approach, that is all
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: 166
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

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

Postby MadMed » Tue Jul 19, 2022 12:00 pm

Thanks Riki, I am inspired by your fortitude and will draw on it when I have to get back on treatment. You're right that we're here to help and support one another. We know deeply what each other are going through. pfccr has contributed a ton and continues to do so. We are rooting for you pfccr, it would be wonderful if you get NED from the current path, we would love it and would benefit from it.
Hang in there, it's dark sometimes but the fight is worth it.
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

Claudine
Posts: 699
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

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

Postby Claudine » Wed Jul 20, 2022 1:54 am

Wow I haven’t been on the forum for a while and it looks like I missed a lot, especially with regards to pfccr’s treatment - I thought he was about to start some very promising things?? Do I understand right that they won’t be available unless he agrees to some chemo?
This is such a personal decision, one cannot judge one way or another. Personally I’m really, really happy that DH agreed to SoC; chemo was anything but fun and left him with painful neuropathy, but it also treated his lung mets, shrank his adrenal met, etc.

Pfccr if you still visit the forum, know that I absolutely respect your ultimate decision, but I still think you should do whatever it takes (including chemo) if it gives you the opportunity to try a novel, powerful, promising treatment, especially one with curative intent. But again, it is your life, your choice. Thinking of you 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


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