Rectal cancer (Stage 3A) diagnosed late June 2017

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susie0915
Posts: 872
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 » Tue Nov 13, 2018 3:29 pm

I just saw my oncologist for my 6 month check. She told me she will order a ct scan for April, one year after the last. She had been doing them every 6 months but said she thinks yearly is fine. I know there is a balance of radiation exposure and how often to monitor. I guess less to worry about for a few months. She did order bloodwork including CEA. I don't think it's a marker for me never been over 1.2, so i dont know.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 13, 2018 3:50 pm

My oncologist mentioned the Surgery Complete-Path-Response and that may factor into one a year vs two a year. But we split the difference at 9 months. If all is fine, then I'd be okay with a year in-between. I think that oncologists are moving to fewer scans. I just read so many cases of recurrence that sometimes it bugs me.

One nice thing today. The lady that took the bloodwork did an incredible job. I barely felt the needle and I didn't feel anything when it was withdrawn. It wasn't even what I'd call a sting. If I felt that in my normal day, I wouldn't have noticed it. I also noticed that the tubes were smaller than what they use at my local hospital and was wondering if they have new tech with needles or if they can run all of the tests with less blood.

The only other time when I barely felt it was when a phlebotomist took my blood.

Dana Farber does bloodwork in a production line. You get off on the second floor and there's a line for checkin with multiple checin people. They check you in and then there's a huge waiting area. You get called and there are a bunch of small rooms with people taking blood. These folks look like they take blood all day long as their job so I guess they get really good at it.
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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mobrouser
Posts: 109
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

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

Postby mobrouser » Tue Nov 13, 2018 10:40 pm

My cancer centre has much the same process for blood work, although I suspect the volume of patients in a day is much smaller than at DF. There are two technicians (I'm not sure of their actual title) who draw blood and it is always the same two no matter what day it is. Anyway they both are so good you can barely feel the needle going in. And they are so so cheery, despite what must be a very mundane job, that I always feel that I have to respond with positivity too. So cheers to all the blood techs in our lives.

Almost forgot to add - I'm on the one scan per year plan too.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

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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 Nov 14, 2018 9:47 am

That's how the blood draw area is at Henry Ford Hospital in Detroit area. They are really good at it. My bloodwork came back fine CEA 0.6, so all good there. I'm okay with not getting a scan until the spring, just a little anxious as there was a tiny nodule on my lung that was being monitored for the last 18 months with no change. The last scan attributed it to fibrosis and did not recommend follow up like the scans prior since it has been stable for so long. So no use worrying now since cannot do anything about it anyway. I will enjoy my holidays.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Nov 14, 2018 10:00 am

Good to see that bloodwork draws at other hospitals. My local hospital is hit or miss. Sometimes they are good and sometimes they are awful.

It was like that in the hospital too. The phlebotomist was as good as it gets but I only had him once. Most of the other draws weren't as good as the people doing them didn't do it as their only job.

I read the surgeon's visit note and she copied the old path report and it said 0/15 nodes so maybe I was a 3A. The old imaging had three suspicious nodes so I assumed 3B. Nobody actually gave me an official Staging.

Today's the first day that I feel that I actually don't have cancer. Objectively, it was last October but all of the treatment, etc. didn't have me mentally of the mind that the cancer was gone. The meeting with the oncologist for surveillance turned the corner for me.
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 Nov 14, 2018 1:55 pm

NHMike wrote:Good to see that bloodwork draws at other hospitals. My local hospital is hit or miss. Sometimes they are good and sometimes they are awful.

It was like that in the hospital too. The phlebotomist was as good as it gets but I only had him once. Most of the other draws weren't as good as the people doing them didn't do it as their only job.

I read the surgeon's visit note and she copied the old path report and it said 0/15 nodes so maybe I was a 3A. The old imaging had three suspicious nodes so I assumed 3B. Nobody actually gave me an official Staging.

Today's the first day that I feel that I actually don't have cancer. Objectively, it was last October but all of the treatment, etc. didn't have me mentally of the mind that the cancer was gone. The meeting with the oncologist for surveillance turned the corner for me.

Wouldn't 0 nodes mean stage 2. I was 0/24 nodes. I was originally staged at 2a as the endoscopic ultrasound showed no suspicious nodes. Even though the tumor was basically gone after surgery and no nodes affected I don't think I was restaged. Oh well, guess it doesn't matter now. I was just thinking maybe you were stage 2.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Nov 14, 2018 2:53 pm

susie0915 wrote:Wouldn't 0 nodes mean stage 2. I was 0/24 nodes. I was originally staged at 2a as the endoscopic ultrasound showed no suspicious nodes. Even though the tumor was basically gone after surgery and no nodes affected I don't think I was restaged. Oh well, guess it doesn't matter now. I was just thinking maybe you were stage 2.


I think that the T number indicated Stage 3 for me but I'd have to dig out the old pathology report.
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

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Nov 14, 2018 2:54 pm

A rather amazing story of a runner with several bouts of cancer. My fitness center manager sent it to me.

https://bravelikegabe.org/about-gabe/
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

Gravelyguy
Posts: 75
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Wed Nov 14, 2018 2:59 pm

It's a small world. One of my former runners is her husband. She is an amazing young woman.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

AppleTree
Posts: 247
Joined: Fri Mar 18, 2016 8:16 am

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

Postby AppleTree » Wed Nov 14, 2018 6:01 pm

Mike, glad to hear you are psychologically feeling good too. The household I live in is very political and all the stress really got to me. At 5'8" I was down to 102...but I got a house sitting "job" for my son and myself temporarily and after 1 week I have gained 5 pounds and slept about 12 hours every night. So, yes emotions do play a part in recovery.

I know there are smaller needles for blood draw because sometimes my nurse will say she needs a butterfly needle and it is smaller. I really like my hospital, for the most part for blood draws. They have tricks! Glass of water before hand. Heat pack in your hand if you are cold to get the vein wider again (brilliant!) 1 time my chemo nurse missed my entire port! Beats me be cause you can see those 3 prongs sticking out clear as day. She went to try again and I said NO WAY, get someone else. She tried to argue it would take too long, but I insisted. I surely did not want the chemo going into my tissues!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Nov 14, 2018 9:12 pm

The surgeon said that it would be fine for me to do abs work and I mentioned that some things cause pain. The internist thought that it was due to scar tissue and the pain was from scar tissue rubbing against muscle. She did a hernia test and said I was fine. So I could just do the exercises and deal with the pain or maybe deep tissue massage to try to break it up.

Today was an awful day for clustering. I have been experimenting with Slippery Elm and what I think is that it pulls the process forward but doesn't reduce the overall time that it takes to clean the GI system out. I think that fiber and/or Imodium may work better for decreasing the time and that's what I'm really looking for. I'm all for doing experiments but they are costly in blowing a lot of time.
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

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Nov 15, 2018 1:25 pm

We have significant snow coming overnight so I'll get some practice up close and personal in clearing the driveway and a roof. I just ordered some sneaker-boots. These are basically like very high-top running shoes - seems to be a new category at New Balance. Winter arrives early this year.
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

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Nov 16, 2018 2:54 pm

6 inches of heavy, wet snow. I cleared part of the driveway, the cars and 1/3rd of a roof in an hour. It was actually a good workout and I felt quite good - though most of the time it's more like a chore. I used fleece gloves which left my hands chilled as it was raining while I was clearing snow and ice. My toes were okay - two pairs of Costco socks. So it looks like I'm ready for winter. I just have to haul out the long underwear from storage.

I remember last year's pain from the Oxaliplatin - in really cold weather. Awful stuff.
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

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 20, 2018 1:34 pm

I had a dentist appointment today so I stopped eating Sunday night and the appointment was fine. I expected them to finish with one appointment but they are changing equipment so the crown work was sent to the lab and should be back next week. I also have Thanksgiving at my sister's so I'll eat something tonight and then fast tomorrow and Thursday morning.

CEA report came back. It's always trepidation when you get test results.

2.0 (0 - 3.8 is normal for non-smokers).

After the appointment, I took a Slippery Elm tablet and had half a sandwich. An hour later, it all came out.

I have had reports of Slippery Elm working as a quick cleanout but I've used it for a month and never experienced it. It seems to help but only a little bit. Similar to the effects of dairy and coffee. But I took Slippery Elm at random times of the day and was never cleaned out before taking it. This time I took the tablet before eating - which is what you're supposed to do. I guess that this coats the intestines before the food goes through. I was quite surprised that it happened so fast though. I will do more experiments in the future but I guess I'll have to be careful. I originally got the pointer to Slippery Elm from the Facebook LARS forum.

I do intend to try Miralax in the future as a few others here have mentioned.
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

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Nov 23, 2018 1:33 pm

I started feeling poorly on Tuesday (roof of mouth sore and headache) and it looks like a cold. I'd guess that sleep loss due to LARS and stress from everywhere knocked my immune system down. The headaches are mostly gone so hopefully I'm functional tomorrow. I got a lot of sleep today and will probably tomorrow as well. The funny thing is that I didn't get sick while on chemo - I was probably more cautious when immuno-compromised.
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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