Rectal cancer (Stage 3A) diagnosed late June 2017

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

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

Postby NHMike » Sun Apr 15, 2018 7:54 am

I bought several types of hand moisturizer products and I put on some Fisherman's Friend this morning before putting on the gloves. I have some stuff from France that I got a few months ago that I haven't opened yet and my good old Vaseline Intensive Care Aloe.

The oncologist asked me to stand on my toes so I did for 15 seconds. He was rather impressed with that length of time which surprised me but I guess a lot of people don't have a lot of forefoot strength. If you run, or play tennis or even walk briskly, you're going to have some decent forefoot strength.
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 » Sun Apr 15, 2018 1:30 pm

I was at Costco today and one of the annoying things is that they don't sell hot coffee. They did have some nice furniture sets so I took a nap there. I was really thirsty afterwards and my son had a lemonade so I took a cautious sip and held it in my mouth for a while and swallowed and it was okay. Drinking it directly gave me the throat closing feeling. So it looks like I can do cold water if I hold it before swallowing - that will be a big help because my favorite drink is cold water.
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 Apr 18, 2018 2:20 pm

Participated in a race for the cure thing at the office today - but it was for diabetes.

Generally feeling crappy but the worst of it is over and I should be improving in all areas except for hands and fee which will continue to worsen.
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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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Wed Apr 18, 2018 6:09 pm

NHMike wrote:Participated in a race for the cure thing at the office today - but it was for diabetes.

Generally feeling crappy but the worst of it is over and I should be improving in all areas except for hands and fee which will continue to worsen.


I've been supporting other causes too, feels good to give.

How many sessions do you have left? I hope the snow is behind you and warmer weather will help with hands and feet.
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
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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

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

Postby NHMike » Wed Apr 18, 2018 7:36 pm

Shana wrote:
NHMike wrote:Participated in a race for the cure thing at the office today - but it was for diabetes.

Generally feeling crappy but the worst of it is over and I should be improving in all areas except for hands and fee which will continue to worsen.


I've been supporting other causes too, feels good to give.

How many sessions do you have left? I hope the snow is behind you and warmer weather will help with hands and feet.


I have two more cycles but the oncologist indicated one more of the Oxaliplatin.

My manager said that we're expecting four inches of snow tomorrow. I don't believe it but it would be par for the course.
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 Apr 19, 2018 10:33 am

90 minutes to change the bag this morning - very frustrating. Previous two times were 10 minutes each. I blame the Oxaliplatin. It should be better next week.
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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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Thu Apr 19, 2018 12:30 pm

NHMike wrote:90 minutes to change the bag this morning - very frustrating. Previous two times were 10 minutes each. I blame the Oxaliplatin. It should be better next week.


Good grief! So sorry that you're dealing with this but there is light at the end of the tunnel as you get closer to completion!
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
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu Apr 19, 2018 12:41 pm

Mike,
So sorry about your hands. I struggled for the first five days post Oxi but I am only on 2nd round of chemo this time. I have been told six months total. I did got credit for 7 weeks before so doing 5 rounds post op with both Oxi and Xeloda. What is your current routine, seems like you are doing a lot more than that?
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
CT NED 9/2018

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

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

Postby NHMike » Thu Apr 19, 2018 12:48 pm

Caat55 wrote:Mike,
So sorry about your hands. I struggled for the first five days post Oxi but I am only on 2nd round of chemo this time. I have been told six months total. I did got credit for 7 weeks before so doing 5 rounds post op with both Oxi and Xeloda. What is your current routine, seems like you are doing a lot more than that?
S


8 cycles at three weeks each (standard XELOX) regimen.

I did the six weeks of Neo-Adjuvant as well.

Oxaliplatin: 100%, 100%, 70%, 65%, 0%, 55%. Oncologist wants 0 or 1 more Oxaliplatin infusion, percentage to be determined.
Xeloda: 100%, 100%, 100%, 100%, 87.5%, 87.5%. I'm inclined to go to 75% the next time if the hands and feet don't decline after I stop taking it this cycle.

The problem today was that stuff came out for 80 minutes and a lot of liquidy so cleaning it and then applying the barrier and then the paste and bag were a problem. I hadn't eaten for 9 hours before but stuff just kept coming out. The stuff is usually a lot firmer without the Oxaliplatin so it will come out and then stop long enough to do the paste and apply the bag. The change next week should be a lot better. It's just one of the headaches of the regimen.
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

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu Apr 19, 2018 12:58 pm

Prior to chemo, overnight was enough time but not now. I do a gentle massage, pushing on my belly to more things along. Mashed potatoes make things solidify for me. It just be very frustrating to take such a chunk out of your day.

Thanks for med info. Still on 1500 daily, start with 600 more daily with Xeloda next round.

Insurance denied last oleo supplies, so weird. Like something changed from first shipment to second, maybe they didn't notice I haven't been back to hospital for a reversal. So far I have received only two shipments, one paid for but not the other. Waiting on justification from physician.
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
CT NED 9/2018

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

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

Postby NHMike » Thu Apr 19, 2018 4:04 pm

Caat55 wrote:Prior to chemo, overnight was enough time but not now. I do a gentle massage, pushing on my belly to more things along. Mashed potatoes make things solidify for me. It just be very frustrating to take such a chunk out of your day.

Thanks for med info. Still on 1500 daily, start with 600 more daily with Xeloda next round.

Insurance denied last oleo supplies, so weird. Like something changed from first shipment to second, maybe they didn't notice I haven't been back to hospital for a reversal. So far I have received only two shipments, one paid for but not the other. Waiting on justification from physician.
S


Potatoes and Sweet Potatoes help - I should probably have those before changing the bag.

I had a lot of problems with the illeostomy supplies as well. I found out that the problem was that my surgeon hadn't signed the prescription. The office gave a verbal on it and they went with that for a short time but eventually needed something signed faxed back. I got the surgeon's office to do that and things have been a lot smoother since then. Sounds like you have the same problem. I'm kind of amazed that these kinds of things (illeostomy and chemo drugs) happen to people - they really shouldn't as it is a major pain for someone that isn't at their best and spending time on the phone to fix this stuff is a pain when it's all time-sensitive. I hope that you can get this resolved with your doctor.

One other minor annoyance on changing the bag is when the wafer tape catches on a piece of hair before you press it down and then you go to press it down and you pull on the hair. You don't want to take the tape off as it might lose adhesion and you can't see down there anyways because the bag is in the way so you just live with the pulling motion until you eventually pull the hair out of the skin.
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: 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 » Thu Apr 19, 2018 4:56 pm

Sounds like having my ileo reversed 5 weeks after my resection because of surgery necessary to remove scar tissue causing a bowel blockage might have not been so bad. I don't know, I did have alot of diarrhea until the week off during chemo though, so maybe bag changing still would've been a better option. You're almost through Mike, hopefully your last couple rounds will be bearable.
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 » Fri Apr 20, 2018 8:25 am

susie0915 wrote:Sounds like having my ileo reversed 5 weeks after my resection because of surgery necessary to remove scar tissue causing a bowel blockage might have not been so bad. I don't know, I did have alot of diarrhea until the week off during chemo though, so maybe bag changing still would've been a better option. You're almost through Mike, hopefully your last couple rounds will be bearable.


I think that it depends on how the surgeon thinks things will work out. If the removal is pretty low, then that can make things more difficult without the bag. It's like getting hit with two things at once instead of serially.

Today's hump day for me. Basically I woke up very tired but was up for 30 minutes and felt really good. The symptoms are still there but this is usually around the time when they start declining at a faster rate - it's usually 9 or 10 days for me. It doesn't hurt that the sun is out today. It's still cold but at least not dark and dreary.
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: 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 » Fri Apr 20, 2018 11:58 am

Omg isn't that the truth. The longest winter ever. Sunny here in Michigan today too and suppose to be 55 degrees. Hopefully we can get some warmer weather to stay. Brighter days make us feel much better.
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

heiders33
Posts: 310
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Fri Apr 20, 2018 7:54 pm

If I was still on Oxaliplatin, I would be insanely frustrated by this prolonged cold. It's bad enough not being on it.

During treatment, I remember thinking about all the things that people don't tell you will intersect: cramped hands and loose stools when you're trying to change the bag, hot flashes and cold sensitivity, dry skin and ileostomy products that irritate it. None of this you learn unless you experience it or hear about it from others who have experienced it.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI


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