Rectal cancer (Stage 3A) diagnosed late June 2017

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susie0915
Posts: 818
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 » Sat Feb 10, 2018 11:36 am

heiders33 wrote:Sorry about your side effects. I just had my last infusion at a 50% reduction, and while the cold sensitivity is basically non-existent (yay!) I'm still experiencing fatigue. I slept about nine hours last night, and now I feel like I need another nap. Granted this reflects cumulative side effects, but it shows this stuff is no joke. I hope that you feel better soon. I'm also in the Northeast and grateful for the above freezing weather.

It took me a good 6-7 months before I really started feeling back to somewhat normal. It was all of the sudden I just realized I have much more energy. It does really take a toll on the body. Going on 2 years since I finished treatment in April and I still have neuropathy in my feet (didn't kick in until a month after finishing chemo either). I've just resided myself to the fact this will be how it is. Doesn't prevent me from doing anything but is annoying. Give it time you will get your energy back probably without even realizing.
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: 1544
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Feb 10, 2018 12:04 pm

susie0915 wrote:It took me a good 6-7 months before I really started feeling back to somewhat normal. It was all of the sudden I just realized I have much more energy. It does really take a toll on the body. Going on 2 years since I finished treatment in April and I still have neuropathy in my feet (didn't kick in until a month after finishing chemo either). I've just resided myself to the fact this will be how it is. Doesn't prevent me from doing anything but is annoying. Give it time you will get your energy back probably without even realizing.


It's definitely a tough road.

One side-effect for me is mistyping. It may not seem like it as I almost always go back and fix things but it's definitely more effort to type which is a good part of my job.

Bag change this morning - 20 minutes (a little leaking from the stoma). Not bad but I was very weak and tired. I'm using the old bags because they hold up better with the Xeloda as the Xeloda has more watery output on average. They're also clear so I can see what's in the bag.

My wife sent me a picture of herself from Singapore yesterday. She looks great - skin better, and a bit darker. Humidity and warm temperatures can do wonders for the skin. I'm back to wearing Nitrile Gloves today to help my fingers. She looks like she's having a good time and I think that some time away from helping to take care of me is good for her. Caregivers need breaks too.

Just came seriously close to throwing up the Xeloda pills. Son brought me a bowl. Nothing came up but it really felt like it wanted to.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

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susie0915
Posts: 818
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 » Sat Feb 10, 2018 5:10 pm

Have you noticed any difference this round since your dose was reduced a little. I know my xeloda was reduced a couple times and oxi I think once. I don't know if I really noticed a difference. Maybe even though the dosage is reduced the effects are also cumulative. i dont know .
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: 1544
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Feb 10, 2018 5:35 pm

susie0915 wrote:Have you noticed any difference this round since your dose was reduced a little. I know my xeloda was reduced a couple times and oxi I think once. I don't know if I really noticed a difference. Maybe even though the dosage is reduced the effects are also cumulative. i dont know .


Things are about the same this round with Oxaliplatin reduced by 20% - that makes sense as it is cumulative. Xeloda dose is the same.

Right now I have a hard time typing as it's 64 degrees in my office and my left index finger doesn't want to bend. I should bring in a space heater and put it on my desk.

Ginger chews and hot chocolate from Whole Foods is helping with some things. Hot coffee helps too. I'm tired of hot water and hot tea all the time.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

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O Stoma Mia
Posts: 1357
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Location: Traveling abroad

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

Postby O Stoma Mia » Sun Feb 11, 2018 2:41 am

NHMike wrote:... and my left index finger doesn't want to bend...

It was the same for me. I think they call it "The Claw" .

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51469&p=399587#p399587

NHMike
Posts: 1544
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Feb 11, 2018 9:17 pm

O Stoma Mia wrote:
NHMike wrote:... and my left index finger doesn't want to bend...

It was the same for me. I think they call it "The Claw" .

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51469&p=399587#p399587


Sounds like a good title for a horror movie.

Awful day today with nausea. I've slept about 2/3rd of the day - I feel weak from not eating but I have to eat to take the Xeloda.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Caat55
Posts: 482
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon Feb 12, 2018 1:51 pm

I know there nothing to offer but support and good thoughts, sending them across the miles
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

NHMike
Posts: 1544
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Feb 16, 2018 11:35 am

I changed the bag on Wednesday after four days. The high watery output resulted in stinging starting on Tuesday and I used the flat Convatec wafer instead of the Convex wafer. I wanted to alternate to use up some of the old supply. That was a mistake. Once the stinging starts, it lasts for a couple of days. I used the Convex wafer for the replacement and I did the crusting thing (powder + Cavillon + powder + Cavilon) and the stinging went away after a day and a half. I really should just stick to the Convex wafers as they work so much better for me. I have 15 of the old ones though - I'll look to give them away as one of my other websites has a mechanism for doing that. A new order of Convex wafers arrived today and I'm going to pick them up this afternoon. I think that I need to change more frequently the week after infusion as the output is different. It firmed up today with a banana last night, some potatoes, and several slices of whole wheat bread.

I've been working a lot of hours this week. I'm supposed to finish today and working hard on getting it done.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Caat55
Posts: 482
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Feb 16, 2018 11:56 am

Mike,
I had a similar experience. They only sent me home with regular wafers, I started experiencing stinging on 3rd day. I took a picture and sent to my doctor as Stanford recommends. I did the powder trick, cut smaller opening and hoped for the best. Fortunately the next day the HH Stoma nurse came, checked everything out and taught me to tear the Eakin ring open and wrap around stoma rather slipping over it. She also suggested Convex wafers. The stoma nurse from Stanford called about the picture, agreed with the convex wafers and called my provider. They, Edgepark, are sending shipper back for unopened packages , crediting me and send me samples of convex wafers pending a new prescription from physician. I had clinic appointment yesterday, taught to use convex and now have that prescription. She also suggested some athletes foot powder to help with the irritation that can occur from the dampness around a poor seal.

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

NHMike
Posts: 1544
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Feb 16, 2018 12:07 pm

Caat55 wrote:Mike,
I had a similar experience. They only sent me home with regular wafers, I started experiencing stinging on 3rd day. I took a picture and sent to my doctor as Stanford recommends. I did the powder trick, cut smaller opening and hoped for the best. Fortunately the next day the HH Stoma nurse came, checked everything out and taught me to tear the Eakin ring open and wrap around stoma rather slipping over it. She also suggested Convex wafers. The stoma nurse from Stanford called about the picture, agreed with the convex wafers and called my provider. They, Edgepark, are sending shipper back for unopened packages , crediting me and send me samples of convex wafers pending a new prescription from physician. I had clinic appointment yesterday, taught to use convex and now have that prescription. She also suggested some athletes foot powder to help with the irritation that can occur from the dampness around a poor seal.

Susan


It sounds like there's a bit of a disconnect in general care. In my case, I was trained to use the flat wafer. I had stinging a week later. I had an appointment with the WOC at the hospital but it was moved out two weeks and it got quite worse during that time. I went to see the WOC and she put on the Convex. I asked about crusting because it was described here in a reply to me. She did the crusting thing so I learned how to do the Convex and the crusting thing. And the stinging went away after a day or two. The stinging continues for a day or two because of pressure, not because there isn't a seal.

My HH nurses weren't particularly useful. One ordered Colostomy bags for me instead of Illeostomy bags - they didn't know what they were doing. Big difference between care in NH and Boston. McKesson will take back unopened stuff but that would mean a trip to the post office or UPS and it would be easier to give it away at this time.

A little knowledge can save from a lot of pain. Information about this stuff on the web is hard to come by. At this time, it's easier to ask here and wait for an answer.

The training aspect is important too. I have samples of other things which might be better products but I'm a bit timid to use them because I don't have training on them.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

heiders33
Posts: 247
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Fri Feb 16, 2018 3:41 pm

I had to switch to convex wafers as well. I have lots of flat ones to give away. Nobody told me to use convex until I finally saw a competent stoma nurse.
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
May 2018: CT scan showed liver spot, MRI inconclusive
August 2018: PET

Caat55
Posts: 482
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Feb 16, 2018 5:32 pm

When I saw the stoma nurse at the hospital yesterday I asked about all the different supplies I have received. She pulled out of the cupboard 4 different companies products and demonstrated them for me. There is also a stoma support group at the hospital in the next county where I can ask questions, get some instruction as well(or that's what I have been told).

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

NHMike
Posts: 1544
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Feb 17, 2018 9:57 am

Caat55 wrote:When I saw the stoma nurse at the hospital yesterday I asked about all the different supplies I have received. She pulled out of the cupboard 4 different companies products and demonstrated them for me. There is also a stoma support group at the hospital in the next county where I can ask questions, get some instruction as well(or that's what I have been told).

Susan


The department at Brigham and Women's called me about an appointment that I have with the WOC nurse in March and asked if I wanted to keep it. I felt that I really didn't need another appointment so I cancelled it. The WOC nurses there are in very high demand. It's an hour away with no traffic but it can be 2-3 hours with traffic. WOC nurses that know what they are doing are fantastic.

I got up early and went to the gym (the real one) and walked 1.25 miles and used the weight machines using levels higher than before. Not quite where I used to do them but adding weight. I was pretty tired afterwards. I will do at least another round at the gym - I'd like to get 5 miles in but I don't know if that will be possible. Additional goals are barbell exercises, bodyweight stuff and flexibility work. Nice to have long weekends.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

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Atoq
Posts: 279
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sat Feb 17, 2018 10:02 am

I wanted to ask you: when did you start doing side plank after the surgery? I know I have to wait 8 weeks for the sit ups, but side plank doesn’t put too much pressure on the stomy and surgery cut I guess?

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery

NHMike
Posts: 1544
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Feb 17, 2018 10:16 am

Atoq wrote:I wanted to ask you: when did you start doing side plank after the surgery? I know I have to wait 8 weeks for the sit ups, but side plank doesn’t put too much pressure on the stomy and surgery cut I guess?

Claudia


I haven't done side planks yet and I'm 3.5 months out. I'll try them today and let you know how it goes.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: 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
MSS, KRAS G12D
10/17: 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
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18


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