Rectal cancer (Stage 3A) diagnosed late June 2017

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Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu Apr 05, 2018 10:27 pm

Good to know, enjoying ice cream tonight. Not taken anything for granted.
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

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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 » Sun Apr 08, 2018 4:01 pm

NHMike wrote:Got in 3 miles today. 1 mile was outside with the Stealth Belt. I like the design though I think that they video suggests orienting the bag sideways instead of up and down. Max speed was 7 MPH which felt like flying compared to what I have been doing. This is our housecleaning week and for me it's mostly lifting heaving things and moving them around and then vacuuming afterwards and then putting things back. It takes about a week to do the whole house and it's a different kind of workout.

The finger neuropathy has decreased. It's still there but I don't think of it as much because it isn't so strong. If it keeps declining, then I should be able to add Oxaliplatin back in for Cycle 6. The temperatures should be in the 50s during the day by the time of the next cycle so it will be easier.


I am interesting in purchasing a Stealth Belt too. I'm not a runner but I do need the support when I'm at the gym lifting weights and doing planks. I've been relying on spandex leggings to keep things in check but that does nothing to support weight of output when it occurs. How do you feel about wearing the bag sideways? I would imagine it's more discreet that way? My ostomy is transverse on the right side and above the navel. The photos seem to all show below the navel and I wonder if that will be an issue in fit?
I appreciate any feedback and suggestions that you may have.

Shana
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: 1722
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Apr 08, 2018 4:34 pm

Their diagram shows horizontal (to the right) mounting of the bag but I just mount it vertical as I usually do and I just tuck it sideways in the belt. Sometimes I wear it hanging out through the open zipper which makes it easy to empty.

My stoma is at the same height as my naval and the belt seems to work okay.

I got the Pro model and it does not provide a lot of protection (it's just cloth) so I don't think that it's going to provide impact protection and I still think that you have to be careful with weights. But it is better than tucking it into my shorts. I usually use it indoors so that I can keep the bag empty or close to it most of the 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

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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 » Sun Apr 08, 2018 5:00 pm

Thanks for the information and yes, I am careful with weights, no more than 20 lbs free lifting.
I think I will order the Hybrid design based on your feedback. I want maximum support and protection. Looks like a 6 week turnaround time but that's okay.
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: 1722
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Apr 08, 2018 5:29 pm

Shana wrote:Thanks for the information and yes, I am careful with weights, no more than 20 lbs free lifting.
I think I will order the Hybrid design based on your feedback. I want maximum support and protection. Looks like a 6 week turnaround time but that's okay.


I ordered the one for $150 and hadn't received any kind of information on when it would be available and called and they said it would be quite a while and switched the order to the Pro which I got a few days later. Theoretically, I have x number of weeks and then rest and then the reversal and I want to get some use out of the thing. I didn't want to wait for May to use it.

I think that 20 pounds is fine. I've felt little funny feelings with barbells and am keeping the weights low though we just got a new seven foot olympic bar in the office gym that I want to try out. My wife asked me to buy a 25 pound bag of rice today (at Costco of course) and it's nice to have the strength to do normal household chores without getting injured. I've been doing more Yoga lately and am really taking a liking to 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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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 » Sun Apr 08, 2018 9:03 pm

NHMike wrote:
Shana wrote:Thanks for the information and yes, I am careful with weights, no more than 20 lbs free lifting.
I think I will order the Hybrid design based on your feedback. I want maximum support and protection. Looks like a 6 week turnaround time but that's okay.


I ordered the one for $150 and hadn't received any kind of information on when it would be available and called and they said it would be quite a while and switched the order to the Pro which I got a few days later. Theoretically, I have x number of weeks and then rest and then the reversal and I want to get some use out of the thing. I didn't want to wait for May to use it.

I think that 20 pounds is fine. I've felt little funny feelings with barbells and am keeping the weights low though we just got a new seven foot olympic bar in the office gym that I want to try out. My wife asked me to buy a 25 pound bag of rice today (at Costco of course) and it's nice to have the strength to do normal household chores without getting injured. I've been doing more Yoga lately and am really taking a liking to it.


That makes sense since your need is short term. I have no reversal scheduled in the near future so I can wait. I work with a trainer twice a week and he makes sure I don't take on too much. My gym has a special cancer recovery program which is free to anyone in the community while undergoing treatment. I was already a member but my dues are waived now.

Glad to hear that you can manage those household chores, it feels good to regain strength and do all the things you're used to doing. I don't lift much more than grocery bags outside of the gym! I haven't tried Yoga but I am sure my joints would benefit.
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...

MissMolly
Posts: 560
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sun Apr 08, 2018 9:18 pm

Shana:
ComFizz is a small company in the UK/England that specializes in underwater and support garments for ostomies. The company has received several awards by the English National Institute
Of Health for their product quality and innovative designs.

ComFizz has recently introduced a stoma protector that several people of the UOAA forum have purchased with rave reviews.

The Stealth Belt receives mediocre reviews on the UOAA forum.
People purchase the Stealth Belt primarily because their are few options.

I am a regular customer of ComFizz and their umdergarments, although I have not personally tried nor purchased the stoma guard. Placing orders, delivery, and making product exchanges has been easy and without hassle.

Before deciding on a Stealth Belt, give consideration to the stoma protector by ComFizz.

www.comfizz.com

- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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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 » Sun Apr 08, 2018 9:35 pm

MissMolly wrote:
I am a regular customer of ComFizz and their umdergarments, although I have not personally tried nor purchased the stoma guard. Placing orders, delivery, and making product exchanges has been easy and without hassle.

Before deciding on a Stealth Belt, give consideration to the stoma protector by ComFizz.

http://www.comfizz.com

- Karen -


Thank you Karen! I will check them out today, I wasn't aware of them

Shana
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: 526
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun Apr 08, 2018 11:35 pm

I have been using a support I got at OstoSecrets. It has a pouch for bag. I wear it at yoga. Today wore it under a slim fitting skirt. It's made of spandex, kind of like a Spanx thing. Works well and it is tan so doesn't stand out. Run large so I took it in a little and it works great.
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

NHMike
Posts: 1722
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Apr 09, 2018 6:09 am

Shana wrote:
NHMike wrote:
Shana wrote:Thanks for the information and yes, I am careful with weights, no more than 20 lbs free lifting.
I think I will order the Hybrid design based on your feedback. I want maximum support and protection. Looks like a 6 week turnaround time but that's okay.


I ordered the one for $150 and hadn't received any kind of information on when it would be available and called and they said it would be quite a while and switched the order to the Pro which I got a few days later. Theoretically, I have x number of weeks and then rest and then the reversal and I want to get some use out of the thing. I didn't want to wait for May to use it.

I think that 20 pounds is fine. I've felt little funny feelings with barbells and am keeping the weights low though we just got a new seven foot olympic bar in the office gym that I want to try out. My wife asked me to buy a 25 pound bag of rice today (at Costco of course) and it's nice to have the strength to do normal household chores without getting injured. I've been doing more Yoga lately and am really taking a liking to it.


That makes sense since your need is short term. I have no reversal scheduled in the near future so I can wait. I work with a trainer twice a week and he makes sure I don't take on too much. My gym has a special cancer recovery program which is free to anyone in the community while undergoing treatment. I was already a member but my dues are waived now.

Glad to hear that you can manage those household chores, it feels good to regain strength and do all the things you're used to doing. I don't lift much more than grocery bags outside of the gym! I haven't tried Yoga but I am sure my joints would benefit.


It's great that you're working with someone. I see a lot of people that use personal trainers these days.

My club has a program for people with cancer but it's at the club that's further from home so I didn't check into it.

Yoga is good for flexibility and balance and I really need both with the chemo.
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: 1722
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Apr 09, 2018 8:36 am

I'll have to look at the Comfizz site but I don't think that I'll be buying anything more at this point.

I had my second fall down the stairs this morning. It might have been the hands and feet with lack of toe sensitivity. My son suggested that I either use the upstairs bathroom or sleep downstairs. I'm inclined to set up the upstairs bathroom for emptying the bag. The downstairs bathroom has a much better toilet and a lot more space so I have been favoring it.

I didn't notice any damage in terms of bruises and no cuts. So I'm getting better at falling.

I am considering talking to the Oncologist about dropping the Xeloda to 3000 MG/day. I started at 4000 and dropped to 3,500 on the fourth cycle.
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: 526
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon Apr 09, 2018 11:21 pm

Hey you be careful. I have to admit, I feel clumsy too and am extremely careful on uneven surfaces and stairs.
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

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Tue Apr 10, 2018 3:46 am

NHMike wrote:... I had my second fall down the stairs this morning. It might have been the hands and feet with lack of toe sensitivity...
I didn't notice any damage in terms of bruises and no cuts. So I'm getting better at falling.


In January 2013, blogger @CHEMOBRAINFOG wrote:Something isn't quite right. I can recall a summer afternoon not so long ago when I tripped or slipped or lost my balance. It didn't happen once. It wasn't twice. It was the third time that send me over the edge.

Reference: http://www.chemobrainfog.com/search?updated-max=2013-01-31T06:00:00-05:00&max-results=3

NHMike
Posts: 1722
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Apr 10, 2018 8:18 am

I used my phone flashlight to walk downstairs this morning so no problems. That may be a viable approach. I suppose I could use a regular flashlight too though I usually take my phone with me when I go downstairs. I just ordered a LED strip lighting kit which I plan to install on the stairs which should illuminate them at night. I will install these on other staircases if they work well.

I have a job that's mentally and technically challenging and I'm able to do it. I also do puzzles and technical challenges regularly and hope that keeps my mind sharp, even with the possibility of chemo brain and the mental decline due to normal aging.

Since it's tax season, I decided to check on whether or not my clinical trial is taxable or not. I found a site that indicated that the threshold for reporting income is $600 (mine was $300), and that a 1099-MISC form will be sent to the participant. I didn't receive such a form as it's below the threshold.
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: 1722
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Apr 11, 2018 8:13 am

I'm sitting in the chair waiting for the Oxaliplatin infusion. The oncologist said that he'd like to do 1 or 2 more out of the next three cycles though I think that he would have been fine stopping it now. We discussed Total Neoadjuvant Therapy and the study that 3 months = 6 months of adjuvant chemo. We're doing 55% today and I'm sure that I won't do Oxaliplatin for round 7. I mentioned dropping the Xeloda dosage though I'm not as worried about the Hands and Feet at the moment. He indicated that I was surprisingly good at understanding the difference between the neuropathy and hands and feet.

A guy from India pinged me early this morning want status on a few things that I'm working on. I just indicated that I'd get it done. I have been getting a lot of service and help requests and haven't been able to do my project work at all because of all of these little tasks and it's making my work day very long. One of the negatives about getting home late is eating late which means more overnight bag output. It's generally best not to eat after 8 PM - to avoid bag issues at night.
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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