Rectal cancer (Stage 3A) diagnosed late June 2017

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susie0915
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Location: Michigan

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

Postby susie0915 » Tue Dec 26, 2017 1:10 pm

My CEA was always less. than .5 It went up too 1.1 during chemo then came back down to <.5 after chemo. But in August back up to 1.0 and my oncologist wasn't concerned. It was back down to <.5 in November. But she did tell me during chemo that your CEA can go up. My lab has 0-5 as normal.
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

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CRguy
Posts: 9612
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Tue Dec 26, 2017 1:53 pm

NHMike wrote:
Aqx99 wrote:
Don't panic if your number does go up a bit. My oncologist told me that very often chemo can cause a temporary rise in the CEA. She said she would only worry if it goes above normal.
True

All of my numbers, even with a huge tumor, were in the normal range, so the numbers are relative.
True


For low/non CEA producing tumors and folks who have low normal levels where CEA is not a good marker .....
relational proportional increases should at least be monitored or checked against other markers

Yes CEA can go up with treatments ... BUTT ....
if it is a large proportional increase for you ( where CEA is not a marker ) then the Docs should at least be keeping an eye on your labs and you.
JMO
from my signature topic
" CEA = 28 tests done ( not a marker for me, never over 1.4 ) "

Stay pro-active moving forward

Cheers all
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

heiders33
Posts: 284
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Wed Dec 27, 2017 7:30 am

benben wrote:
NHMike wrote:
I went to Costco and they didn't have Balaclavas in my size but I picked up a package of Bolle Ski Goggles (antifog) so these will be good walking outside tomorrow. Forecast is 6-10 inches of snow with wind at 20-30 MPH. I didn't check the temperatures. I will use my Balaclava shirt and maybe a scarf (I have this nice Scottish six-foot scarf that I got in London in the 1980s). I also picked up some battery-powered handwarmers. They are basically 4,600 mah batteries connected to a heating element. You put them in your palm and press the button on the top and they heat to 114 degrees. I need to check out the reviews but these may be handy in the car for a quick warmup after clearing it of ice and snow.


Yes, I'm feeling great. Hope it stays that way and I can reside in NED.

You guys have it even more rough with enduring Oxali during the cold. I can't imagine going through treatment in the winter.
I got shivers in the summer while on treatment if I was in an AC room under 72 degrees. Sounds like you're being innovative in ways to battle the cold though.
Stay Warm!


I’m also in the Northeast, and this sustained well-below-freezing temperature we’ve been having is actually unusual this early in the winter, at least compared to the last couple winters. I think my family is tired of hearing me complain about it! I bought a Balaclava on Amazon which should be arriving today. Hopefully that will help as I’m walking to work next week in the bitter winds. My fourth infusion is today so I will still be feeling the effects.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

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

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

Postby NHMike » Wed Dec 27, 2017 8:21 am

heiders33 wrote:I’m also in the Northeast, and this sustained well-below-freezing temperature we’ve been having is actually unusual this early in the winter, at least compared to the last couple winters. I think my family is tired of hearing me complain about it! I bought a Balaclava on Amazon which should be arriving today. Hopefully that will help as I’m walking to work next week in the bitter winds. My fourth infusion is today so I will still be feeling the effects.


It's six degrees where I am right now and we have negative temps tonight and low single digits for several days after that. My Balaclava from Amazon doesn't arrive for another week or two so I might try to pick one up from the local mall - if they have any. I might try a local ski shop too. I don't mind having a couple of them. I have a number of errands to run today so I'm going to find out how bad the cold is. I'm a week out of the infusion and was hoping that the side-effects would be gone by now but I'm not sure whether or not that's true. Part of the reason is that temperatures that we have right now can be painful, even without the Oxaliplatin.

One thing that I noticed yesterday is that my bag output thickened up. Actually it's done so gradually for the past two or three days. My weight also dropped four pounds yesterday. It's likely water weight as you can't lose fat or muscle that fast without working out a lot. I have been doing a lot of stuff outside but not four pounds worth. I am focused on hydration and electrolytes.

I picked up 1,000 shares of Encana yesterday. Natural Gas is about $2.60/million BTUs. Normally it's about $4 to $15 with this kind of weather. But the shale revolution produces huge amounts of Natural Gas as a byproduct which keeps prices depressed.
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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susie0915
Posts: 847
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Wed Dec 27, 2017 9:57 am

I know I dropped 6 lbs after my first treatment of Xelox. I struggled do keep weight on even with exercise and weight lifting. Diarrhea was an issue. Keep an eye on your output. I didn't have a bag during treatments so I'm not sure what diarrhea would be like with an ileo. I did treatments through winter in Michigan and it can be brutal with the cold sensitivity.
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: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Dec 27, 2017 10:06 am

susie0915 wrote:I know I dropped 6 lbs after my first treatment of Xelox. I struggled do keep weight on even with exercise and weight lifting. Diarrhea was an issue. Keep an eye on your output. I didn't have a bag during treatments so I'm not sure what diarrhea would be like with an ileo. I did treatments through winter in Michigan and it can be brutal with the cold sensitivity.


I had about 25% more calories yesterday than usual so that should help but I’ll keep an eye on my weight. The bag did get not watery this morning so that’s good. One good thing about cold weather areas is the available stores for cold weather gear. I called a ski shop and they have five different brands of Balaclavas in stock so I’m heading there today as I have a few errands to do in that part of town.

I went out this morning and my feet are cold but the rest is okay. I didn’t use the wool socks this morning. Maybe the Oxal is fading.
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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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Wed Dec 27, 2017 10:13 am

I did see on Fox News this morning heated insoles that you can charge and put in your shoes/boots. They were about $130
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: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Dec 27, 2017 10:51 am

susie0915 wrote:I did see on Fox News this morning heated insoles that you can charge and put in your shoes/boots. They were about $130


I don't like the concept as you have all of your bodyweight on top of them and something electrical would likely break down over time.

My fitness center manager recommended sheepskin insoles for about $15/pair.
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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susie0915
Posts: 847
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 Dec 27, 2017 11:06 am

NHMike wrote:
susie0915 wrote:I did see on Fox News this morning heated insoles that you can charge and put in your shoes/boots. They were about $130


I don't like the concept as you have all of your bodyweight on top of them and something electrical would likely break down over time.

My fitness center manager recommended sheepskin insoles for about $15/pair.

That makes sense. I'll check the sheepskin my feet are always cold
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

heiders33
Posts: 284
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Wed Dec 27, 2017 2:52 pm

Does anyone know why the Oxaliplatin causes such liquidy output? I had solid food for breakfast and lunch and had my fourth infusion today. And I’ve had nothing but liquid output all day.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

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

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

Postby NHMike » Wed Dec 27, 2017 3:14 pm

heiders33 wrote:Does anyone know why the Oxaliplatin causes such liquidy output? I had solid food for breakfast and lunch and had my fourth infusion today. And I’ve had nothing but liquid output all day.


Could it be the Xeloda or 5FU causing the liquidy output?

I think that the best thing to do is make a list of foods and how they respond in the bag so that you have a sliding scale of foods and so that you can adapt your diet to the conditions of the chemo drugs. I do know that potatoes and sweet potatoes can really thicken output. Sometimes it’s too thick.

Chocolate is also a good thickener.
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

heiders33
Posts: 284
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Wed Dec 27, 2017 3:56 pm

The Xeloda sometimes causes liquid output, but it’s definitely more consistently liquidy after the Oxali. I’ll probably eat some potatoes tonight.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

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

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

Postby NHMike » Wed Dec 27, 2017 4:23 pm

I was outside walking around in 20 degree weather without hat and gloves so I think that the cold sensitivity is over. It seems like I had it longer than most that I've heard about (3-5 days), 7 days for me. So it looks like I'm good for 14 days.
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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susie0915
Posts: 847
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 Dec 27, 2017 5:43 pm

NHMike wrote:I was outside walking around in 20 degree weather without hat and gloves so I think that the cold sensitivity is over. It seems like I had it longer than most that I've heard about (3-5 days), 7 days for me. So it looks like I'm good for 14 days.

Good to hear.
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: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Dec 28, 2017 8:35 am

I got the information on the billing for the infusion. The hospital charged $11,700 and the plan discount was about 92% so they paid $1,060. The blood work was $260 and the plan paid most of that. I am not sure about the costs for the Oxaliplatin yet - if they are included, then fine, if not, I'll see another line item in my insurance portal.

Current temperature is -1, windchill -17. I'm going to go out for a walk this morning to see how it feels.

My daughter asked me if I still had cold sensitivity. I said everyone has cold sensitivity at these temperatures.
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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