My Current Protocol——-All Thoughts/Criticism Welcomed

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MadMed
Posts: 216
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: 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 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: 216
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: 809
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

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


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