Rectal cancer (Stage 3A) diagnosed late June 2017

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
susie0915
Posts: 757
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Wed Jan 10, 2018 5:33 pm

During chemo my CEA went up to 1.1 from less than .5. My oncologist told me it is normal to go up during chemo. But you are still in the low end of normal. The next reading I had was back down to .8.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1204
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Jan 10, 2018 7:08 pm

Took my nap and it is still awful. This is going to be tough until it starts to subside. Going back to sleep some more with gloves.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

heiders33
Posts: 195
Joined: Sat Nov 04, 2017 11:08 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby heiders33 » Wed Jan 10, 2018 7:19 pm

Sorry about the bad side effects! I know you can make it through. Sometimes you just have to sleep to allow your body to rest and, honestly, to make the time go by faster.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges

NHMike
Posts: 1204
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Jan 10, 2018 8:19 pm

I went to cry a few times over the pain. Unfortunately crying brings a lot of pain to my eyes. Sleep is a reprieve. So much for the gym tonight.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

User avatar
Robino1
Posts: 433
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Robino1 » Wed Jan 10, 2018 8:52 pm

Let your doctor know that you are having the worst time with the oxaliplatin. Some people just cannot tolerate it a all. You may have to drop it.

Oh and the crying thing... Yeah, I learned that one early on also. Who woulda thunk that crying can be such a pain!!! (trying for a little humor)
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
BRAF V600e

heiders33
Posts: 195
Joined: Sat Nov 04, 2017 11:08 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby heiders33 » Wed Jan 10, 2018 9:04 pm

Yeah, it’s one of the cruelties of Oxaliplatin.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges

User avatar
susie0915
Posts: 757
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Wed Jan 10, 2018 9:12 pm

Yes I remember the burning when tearing up. Do make sure if things don't get better you talk to your oncologist. Dosages can be reduced
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Zig2017 » Wed Jan 10, 2018 9:15 pm

Mike during my husbands FOLFOX he would sometimes use a heating pad on low setting if things got rough. He also rested with hands a little above his heart and he swore that worked. I know it’s miserable, but worth doing “just in case” and to keep any cancer at bay. I hope you start feeling better after sleep. That always helps. Can you do Uber or have someone drive you so you don’t have to clean the car?
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

User avatar
Shana
Posts: 333
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Shana » Wed Jan 10, 2018 9:24 pm

Wow, I had no idea! So sorry to hear how you're struggling. I really had no sense of what havoc it can cause on the body besides neuropathy and mild cold sensitivity. That bitter cold in your area is an added burden too!

Praying you and others going through this get relief soon! :(
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

NHMike
Posts: 1204
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Jan 11, 2018 1:12 am

A bunch of food seems to have helped. Maybe I needed more calories to get my body warmer. I put off taking the Xeloda for a few hours as I was worried that it would make things worse but I eventually took it. I talked to the oncologist this morning before the Oxaliplatin and will push for a decrease in dosage for cycle 3 but I need some hard numbers as in how long this stuff lasts.

Some people don't like to talk about how tough it is and some talk about it but not in detail.

I didn't think that it would be this tough but was worried because so many indicated that it is.

I will try to adjust though. Hopefully tomorrow is a better day.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

NHMike
Posts: 1204
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Jan 11, 2018 7:16 am

I feel a lot better this morning. The side effects are still there but they're decreased. The oncologist added magnesium to the IV and I had a sweet potato and potato yesterday which likely helped with added potassium. I also increased sodium intake. So I think that the neuro-side-effects greatly increase the body's need for electrolytes. I had tried one of the pedialyte-type supplements but the taste of those things is awful (too sweet for me) so I will try tablet forms of Magnesium and Potassium and increase sodium intake. I greatly increased sodium intake the previous time for the first week and then tapered off afterwards.

I had cramping yesterday but I didn't have the night cramps like I did the first cycle. Those are really painful.

I am going to the office today and want to get in five miles of walking. I will be puttnig my electric tea kettle to good use today.

So one really tough day and I'm looking to bounce back hard.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

User avatar
susie0915
Posts: 757
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Thu Jan 11, 2018 8:07 am

My potassium was always low as well. I know those pills are huge, but there is a powder you can drink but tastes awful. It's good to keep a journal of side effects as a lower dosage can be done. My xeloda was lowered 2-3 times due to diarrhea and I think the oxi was lowered once. Diarrhea was my biggest issue, but I think it was compounded because my ileo was reversed early. I don't know if you notice any difference in the output of your bag, but stay hydrated. I went in a couple times for hydration IVs as well.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1204
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Jan 11, 2018 8:14 am

susie0915 wrote:My potassium was always low as well. I know those pills are huge, but there is a powder you can drink but tastes awful. It's good to keep a journal of side effects as a lower dosage can be done. My xeloda was lowered 2-3 times due to diarrhea and I think the oxi was lowered once. Diarrhea was my biggest issue, but I think it was compounded because my ileo was reversed early. I don't know if you notice any difference in the output of your bag, but stay hydrated. I went in a couple times for hydration IVs as well.


My bag is more watery for the first week. Potatoes and sweet potatoes help quite a bit firming it up. The third week it's actually quite firm - maybe even a bit more than I want it to be. The potatoes work a lot better than the fiber supplements.

There are sports supplement pulls that taste okay but they're relatively pricey and don't have the potency of the stuff that you can get at Whole Foods (which can also be pricey).
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

User avatar
susie0915
Posts: 757
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Thu Jan 11, 2018 8:17 am

NHMike wrote:
susie0915 wrote:My potassium was always low as well. I know those pills are huge, but there is a powder you can drink but tastes awful. It's good to keep a journal of side effects as a lower dosage can be done. My xeloda was lowered 2-3 times due to diarrhea and I think the oxi was lowered once. Diarrhea was my biggest issue, but I think it was compounded because my ileo was reversed early. I don't know if you notice any difference in the output of your bag, but stay hydrated. I went in a couple times for hydration IVs as well.


My bag is more watery for the first week. Potatoes and sweet potatoes help quite a bit firming it up. The third week it's actually quite firm - maybe even a bit more than I want it to be. The potatoes work a lot better than the fiber supplements.

There are sports supplement pulls that taste okay but they're relatively pricey and don't have the potency of the stuff that you can get at Whole Foods (which can also be pricey).

Yes I ate alot of potatoes and bananas. I still eat a banana every day now.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1204
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Jan 11, 2018 12:50 pm

Either calories or electrolytes has something to do with the cold sensitivity. I was feeling it late this morning and went down to get some food and tossed a ton of salt in and that stopped the cold sensitivity. So not sure that it's the lytes or the calories but I guess I need to do some testing to find out which it is (or maybe it's both).
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], Majestic-12 [Bot], Yahoo [Bot] and 29 guests