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retiredteacher
Posts: 95
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 ...
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/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 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

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Robino1
Posts: 463
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
2017
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.
Latest CT scan shows 2 new tumors and return of ascites.
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: 93.5; 107; 119
BRAF V600e

Beckster
Posts: 279
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!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
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, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D

Caat55
Posts: 528
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.

S
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
Last Oxaliplatin 7/5/18, 5 rounds

margiej
Posts: 41
Joined: Sat Apr 14, 2018 8:46 am

Re:

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?

https://water.usgs.gov/nawqa/studies/domestic_wells/nitrate.html


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.
https://www.berkeyfilters.com
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
NED

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Wed Apr 25, 2018 10:31 am

Folic acid/folate:

Had a terrible time with nausea Monday and decided to research folic acid .... https://www.globalhealingcenter.com/nat ... cid-foods/ --- it's in everything (!) if you have a good healthy diet. So it's not enough apparently to eliminate fortified breads, cereals - it might be wise to look at the whole diet. I realized my organic "folic acid free" bread contains flax - a high source of folic acid. I have been eating oranges and pineapple like they're going out of style - other great :shock: sources of folic acid. More to learn - but looks like dairy may be a safe bet. Anyway - Tuesday was a much better day, but all I ate was cheese and yogurt. It's a work in progress! :D
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/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 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Wed Apr 25, 2018 11:55 am

Flour - Could not find a flour without folic acid in stores - Red Mill has it, the stuff at the organic health food store has it. I don't know about the King Arthur. Then, in my own pantry I found a bag of Trader Joe's White whole wheat flour (sounds like a typo, but that's what it is) and voila! No folic acid! Not sure how old the stuff is, but if it's any good will use for pizza crust today .....
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/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 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Wed Apr 25, 2018 9:58 pm

retiredteacher wrote:Folic acid/folate:

Had a terrible time with nausea Monday and decided to research folic acid .... https://www.globalhealingcenter.com/nat ... cid-foods/ --- it's in everything (!) if you have a good healthy diet. So it's not enough apparently to eliminate fortified breads, cereals - it might be wise to look at the whole diet. I realized my organic "folic acid free" bread contains flax - a high source of folic acid. I have been eating oranges and pineapple like they're going out of style - other great :shock: sources of folic acid. More to learn - but looks like dairy may be a safe bet. Anyway - Tuesday was a much better day, but all I ate was cheese and yogurt. It's a work in progress! :D


I buy Bob's Red Mill Organic, no folic acid. Pineapple is hard on stoma , too much chewing so I skip it.

My nausea is gone, able to eat cool foods like yogurt with fresh strawberries, red wine. I still have finger pain from touching the metal ring on jelly jars, orange juice bottle, even carrying a carton of milk back to classroom today.

I haven't been worried about natural sources of folic acid, I believe your body digests it differently then the additives. But I will email pharmacist who shared info and chemo education nurse to see for sure.

Susan
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
Last Oxaliplatin 7/5/18, 5 rounds

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Wed May 02, 2018 11:57 am

Unreal diarrhea began on day 14 of cycle 2; Lomotil did not help; finally mixed Lomotil with Norco for a five hour relief. Oncologist is pushing back cycle 3 one week - to begin May 10 rather than May 3, and will reduce the Xeloda back down to 2000 mg from 2500. This was a big issue toward the end of neoadjuvant. Still fighting it today - fingers crossed.
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/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 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Wed May 02, 2018 12:03 pm

retiredteacher wrote:Unreal diarrhea began on day 14 of cycle 2; Lomotil did not help; finally mixed Lomotil with Norco for a five hour relief. Oncologist is pushing back cycle 3 one week - to begin May 10 rather than May 3, and will reduce the Xeloda back down to 2000 mg from 2500. This was a big issue toward the end of neoadjuvant. Still fighting it today - fingers crossed.


I have low RBC and WBC and a lot of fatigue so we pushed back a week as well. My oncologist prefers a one-week break to skipping cycles.
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; 9/8: 1.8; 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
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

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: New Member here on the forum

Postby O Stoma Mia » Wed May 02, 2018 1:19 pm

retiredteacher wrote:Unreal diarrhea began on day 14 of cycle 2...

If you are having uncontrolled diarrhea, then you need to watch your fluid intake very closely. Diarrhea will cause a loss of electrolytes, and if these are not replaced in a timely fashion then there will be problems with kidney function that may lead first to failed renal function tests in your blood work, and then later maybe to kidney stones or bladder stones, or even in severe cases, to renal failure.

You need to replace the lost fluids with electrolyte-balanced fluids, e.g., sports drinks like Gatorade,100-Plus, etc, or lots of water containing oral rehydration salts, or equivalent.

If you don't replace the lost fluids with electrolye-containing fluids, then your renal function tests will eventually go out of range and you will have to skip chemo cycles until these tests come back into range.

Just drinking water is not enough.The water needs to contain sufficient electrolytes to replace what was lost due to diarrhea.

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Wed May 02, 2018 1:21 pm

O Stoma Mia wrote:
retiredteacher wrote:Unreal diarrhea began on day 14 of cycle 2...

If you are having uncontrolled diarrhea, then you need to watch your fluid intake very closely. Diarrhea will cause a loss of electrolytes, and if these are not replaced in a timely fashion then there will be problems with kidney function that may lead first to failed renal function tests in your blood work, and then later maybe to kidney stones or bladder stones, or even in severe cases, to renal failure.

You need to replace the lost fluids with electrolyte-balanced fluids, e.g., sports drinks like Gatorade,100-Plus, etc, or lots of water containing oral rehydration salts, or equivalent.

If you don't replace the lost fluids with electrolye-containing fluids, then your renal function tests will eventually go out of range and you will have to skip chemo cycles until these tests come back into range.

Just drinking water is not enough.The water needs to contain sufficient electrolytes to replace what was lost due to diarrhea.


Very important point. I find that electrolyte gives me cramps and that's a definite warning sign too of insufficient electrolytes.
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; 9/8: 1.8; 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
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

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Wed May 02, 2018 1:32 pm

Thanks - I have been including SOME Gatorade - will go back to inclusion of Pedialyte and up quantities1
Terri
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/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 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Wed May 02, 2018 10:54 pm

Terri
I am sorry to hear that you've developed this complication. The heat has presented a challenge for me, how about you? The a/c makes my throat get funny and I can't seem to find a temperature that's comfortable. I also noticed a tan line on my foot after just a few hours outside on Sunday, will have to lather on sunscreen.
I just found an iron supplement that is veggie based and without folic acid. I have been anemic since this started last summer. So maybe the iron is hold the diarrhea at bay. I am going in tomorrow for round three, wish me luck!
Susan
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
Last Oxaliplatin 7/5/18, 5 rounds

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Tue May 08, 2018 9:58 am

Terri,
How are you doing? Hope symptoms, side effects are gone. When, do you start back? It is sure heating up quickly which presents new challenges.
Susan
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
Last Oxaliplatin 7/5/18, 5 rounds


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