Good news...and I'm at my lowest

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Posts: 270
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Good news...and I'm at my lowest

Postby Eleda » Tue Jan 30, 2018 4:02 pm

I'm not Ireland and as far as I'm aware it "is"common practice to do mop up chemo
Any into I get seems to be from the MC Milan foundation in the UK ( I'm in Ireland) but my oncologist refers to treatment as world wide standard as in we follow the Americans Basically
If u want to do the chemo in sure if u insist they will
And if not the vigilant monitoring
Good luck with ur choice
And congrats on ur results
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
Second attempt with oxi aug 12th

Posts: 19
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Good news...and I'm at my lowest

Postby sealdog » Tue Jan 30, 2018 10:23 pm

I'm honestly surprised myself. Of course I didn't want to have any more chemo but everything I've read on here prepared me for it.
Two oncologists have now said they wouldn't recommend adjuvant regardless of my lynch status.
They believe it would add 1-2% extra on top of my 90-95% chance of being cured (knock on wood).
I wish I had more info to give you why they are pushing me away from adjuvant treatment as a Stage 3 other than I was over staged in the beginning.
My CEA was 0.5, a pathological complete response and most likely a dMMR tumour (this is being confirmed retroactively via my first biopsy currently and genetic test but Mum is Lynch).
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

Posts: 621
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Good news...and I'm at my lowest

Postby teachpdx » Wed Jan 31, 2018 9:37 pm

Hey Sealdog,

I pretty much went through same treatment as you, plus I'm Lynch, and I had such a bad reaction to post Xeloda (only 1-1/2 cycle instead of 6) that I quit early. Onc said people with Lynch less apt to have metastases but more apt to new primary. Also said post efficacy was only 10% & I figured worth it not to be tortured.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Posts: 1909
Joined: Fri Jul 21, 2017 3:43 am

Re: Good news...and I'm at my lowest

Postby NHMike » Mon Feb 05, 2018 11:27 am

sealdog wrote:
heiders33 wrote:Sorry if I’m not up to date on this, but did you not have an oncologist during your six weeks of chemo/radiation? What does he or she have to say? I think post-op chemo is pretty standard for stage III, although my Croatian oncologist said it’s not standard in Europe - not sure if that’s true.

Had my oncologist appointment today. They're all suggesting no chemo based on the response i had and presumed lynch status. Even if I wasn't lynch they still wouldn't recommend chemo. She said Europe and America have different opinions on chemo after a complete response, America saying "until you can prove it doesn't work we will give it regardless."

I'm obviously opting for no more chemo if the odds are already at 90-95 % chance of beating this dread disease. She was fairly optimistic.

I am 3B and had a CPR as well after surgery but I have my third round in two days. Yes, the standard of care in the US is Adjuvant Chemotherapy for Stage 3. I'd assume that this is research-based practice but procedures are always changing so that researched-based practice is a moving target. I find the Adjuvant Chemo to be brutal myself.
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
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

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