New Member here on the forum

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Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Sat Apr 14, 2018 10:31 am

Yes - she actually said she's never seen - I am going to try to copy some of the remarks here and take into the nurse and onco. Made me feel ... weird about reporting. :roll: I don't really know where to strike a balance between reporting side effects and being a complainer ...
63 yo female
RC 9/13/17 Adenocarcinoma 6.3 - 7 cm tumor
6 cm, or maybe 8 - 10 cm fr AV
G2: Moderately differentiated (Path rprt), MSS
Unstaged, guesstimate T3N0M0 PET, no MRI, no ultrasound
2500 Capecitabine/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1
CAPEOX starting March 2018

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Posts: 417
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New Member here on the forum

Postby Robino1 » Sat Apr 14, 2018 7:58 pm

To not sound like I'm complaining (I hope!) I just matter of factly say I'm feeling the first bite thing. She's actually asked what that is and I told her. I also told her about this forum and I've learned what to watch for and how to manage these effects. It helps knowing that this is 'normal'.

I honestly believe that we need to be reporting to our doctors every side effect we experience. Whether they believe us or not. Maybe the next patient they have tell them of the same side effect, they may actually listen.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8
BRAF V600e

Posts: 229
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New Member here on the forum

Postby Beckster » Sat Apr 14, 2018 8:48 pm

I was only on Oxi for one infusion...first bite hit after 1 hour and lasted for four days!
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8
Clear Colonoscopy 10/17 :D

Posts: 284
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Sun Apr 15, 2018 1:04 pm

Well it sounds like our experiences were very similar. I am grateful that I read others experiences or it would have been quite frightening

Today the rocks are lingering in my throat, it is windy.

I think it is all just crap! My husband made a huge dish of garlic mashed potatoes last night, easy to eat and a comfort.

55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

Posts: 8
Joined: Sat Apr 14, 2018 8:46 am


Postby margiej » Thu Apr 19, 2018 3:15 pm

O Stoma Mia wrote:
retiredteacher wrote:... we are on untreated well water. Good quality, but too many unknowns in the piping system etc...

I have a special interest in groundwater contamination because most of the persons I know who had gastrointestinal cancers lived outside metropolitan water districts and had their own private, domestic wells.

Have you had your well water tested for contamination?

We live in the country with our own well. It had always tested ok for bacteria and nitrates, but hasn't been tested for many years and who knows about other chemicals or pesticides. After reading this and for peace of mind, we just bought a water filter that will sit on our counter. My daughter has one for her city water and loves it.
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6

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