Starting point

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

Re: Starting point

Postby MadMed » Sat Jun 05, 2021 1:50 pm

Thanks Bpaint,
We just got with a support center that offers all kinds of these services. I will try the acupuncture.
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

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Starting point

Postby NHMike » Fri Feb 25, 2022 6:21 pm

I'm posting on your thread as it was interesting reading through it. So many things have changed from five years ago with TNT as the Standard of Care. It was just going into trials around 2018 I think. The main idea back then was that some people would have no evidence of disease after Chemo and CRT and wouldn't need surgery so as to spare function. I had lost a moderate amount of function so this sounded pretty good to me but I know how you felt when you just wanted a surgeon to cut the thing out of you after diagnosis.

I am quite impressed with your research, preparation and writing.

Is your surgery contingent on the upcoming tests or is it just to plan the surgery?
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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

Re: Starting point

Postby MadMed » Fri Feb 25, 2022 6:51 pm

Thanks Mike, my surgeon in our first meeting asked me if it turns out there’s no cancer after surgery if I would be upset.
I told him no, now that I’m at surgery time, being cCR or almost cCR, I want to take the chance of watch and wait. He supports me and suggested I do a few 6 weeks check sigmoidoscopies and then an MRI, if all checks out, get on watch and wait.
I’ve done extensive reading, particularly on recent studies of W&W and it’s no worse than surgery with a huge upside of no surgery.
I was floored when he told me that he supports it, he’s a well known surgeon in the Mass general system. Next scan and sigmo, he’ll put me in the program and hold off on surgery. He told me I was well informed and honestly, thanks to your detailed, well written posts, i was able to educate myself. I hope you do write that book you mentioned, I’d love to read it :D
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: Starting point

Postby claudine » Sat Feb 26, 2022 10:39 am

I’ve done extensive reading, particularly on recent studies of W&W and it’s no worse than surgery with a huge upside of no surgery


And that’s a HUGE advantage! I’m already dreading DH’s ileostomy reversal (and he still a month from getting LAR), that’s wonderful that you may never have to deal with it. Here’s to clear sigmoidoscopies and MRIs :D
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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