Near-complete pathological response !

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NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Near-complete pathological response !

Postby NHMike » Sun Nov 19, 2017 7:36 am

ocstacy wrote:
My ostomy nurse started me on that because sometimes your output can get on the vent and leak through to your clothes.


Yes, that happened to my mommy. She was too scared and nervous to change the whole pouch herself so I helped her with the whole change. She is afraid to shower with it off, which the surgeon and nurses said it would be just fine if water hits it. I have been watching You-Tube videos and now we have a routine, where she uses chucks tucked in her pants as a leak guard, etc. She is a 1 1/4 circum. cut. I didn't know that they shrink to different sizes. I'm learning each day. My mom doesn't like it at all, but she needs to understand that her cancer is nearly gone. I have no idea when she will start the chemo again. Does she have to?


I can understand the anxiety in changing the bag. I haven't heard the term "chucks" in a long time - basically when I was working on a medical-surgery floor in my teens. As you know, my situation is similar to your mothers and I expect post-surgical chemo. My surgeon has already spoken to my Oncologist (well, my Dana Farber Oncologist) and I find out in two weeks. I expect 5FU/Xeloda. The question is will there be anything else?

I like your statement "is nearly gone". Your mother has endured two-thirds of a marathon.
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; 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, 2/12 1.2
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
2/19: Clean CT

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Near-complete pathological response !

Postby susie0915 » Sun Nov 19, 2017 9:21 am

NHMike wrote:
ocstacy wrote:
My ostomy nurse started me on that because sometimes your output can get on the vent and leak through to your clothes.


Yes, that happened to my mommy. She was too scared and nervous to change the whole pouch herself so I helped her with the whole change. She is afraid to shower with it off, which the surgeon and nurses said it would be just fine if water hits it. I have been watching You-Tube videos and now we have a routine, where she uses chucks tucked in her pants as a leak guard, etc. She is a 1 1/4 circum. cut. I didn't know that they shrink to different sizes. I'm learning each day. My mom doesn't like it at all, but she needs to understand that her cancer is nearly gone. I have no idea when she will start the chemo again. Does she have to?


I can understand the anxiety in changing the bag. I haven't heard the term "chucks" in a long time - basically when I was working on a medical-surgery floor in my teens. As you know, my situation is similar to your mothers and I expect post-surgical chemo. My surgeon has already spoken to my Oncologist (well, my Dana Farber Oncologist) and I find out in two weeks. I expect 5FU/Xeloda. The question is will there be anything else?

I like your statement "is nearly gone". Your mother has endured two-thirds of a marathon.

I was stage 2A. After chemo/radiation the surgeon did a sigmoidoscopy and said all that was left was scar tissue and I may not need chemo after surgery. I was thrilled. However, the pathology report showed minimal residual cancer cells and even tho margins were clear and no lymph nodes involved he and my oncologist recommended chemo. I was not happy but my oncologist explained that even though everything was clear, cancer cells can still get into the blood stream and she wouldn't want me to wonder "what if" if I had a recurrence and didn't do the chemo. She did explain the chance of recurrence was very low, but still recommended chemo. Your mother is a little older than I was, so the doctors may not be as insistent but my guess is she will be offered chemo. If so, maybe just xeloda would be a good option. I'm not sure what the protocol would be for your mother's case. I know she has had a rough time dealing with treatment and all the complications that have come up. I'm sure her oncologist will explain all the options so you and your mother can make an informed decision. Good Luck. You have been such a good and positive caregiver for her. I'm sure she appreciates all that you do.
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Near-complete pathological response !

Postby Aqx99 » Sun Nov 19, 2017 9:28 am

ocstacy wrote:
I keep tape on my vent all the time. It is part of my prep procedure for changing pouches. My ostomy nurse started me on that because sometimes your output can get on the vent and leak through to your clothes.


Good to know. Do you put the tape on it when you shower? We learn new things each day.


I put a piece of paper medical tape over the vent when I prep a new pouch to be put on. I leave it there the entire time. It still allows the vent to work, but keeps a barrier for liquid both in and out.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Near-complete pathological response !

Postby ocstacy » Mon Nov 20, 2017 2:17 am

FYI, there is a support group chat every day at noonET on the Colorectal Cancer Alliance's website if you are interested. There is also a caregiver chat every Thursday at 1ET.

https://www.ccalliance.org/get-support/group-chat/


Thank you so much!!
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Near-complete pathological response !

Postby ocstacy » Mon Nov 20, 2017 2:24 am

I was stage 2A. After chemo/radiation the surgeon did a sigmoidoscopy and said all that was left was scar tissue and I may not need chemo after surgery. I was thrilled. However, the pathology report showed minimal residual cancer cells and even tho margins were clear and no lymph nodes involved he and my oncologist recommended chemo. I was not happy but my oncologist explained that even though everything was clear, cancer cells can still get into the blood stream and she wouldn't want me to wonder "what if" if I had a recurrence and didn't do the chemo. She did explain the chance of recurrence was very low, but still recommended chemo. Your mother is a little older than I was, so the doctors may not be as insistent but my guess is she will be offered chemo. If so, maybe just xeloda would be a good option. I'm not sure what the protocol would be for your mother's case. I know she has had a rough time dealing with treatment and all the complications that have come up. I'm sure her oncologist will explain all the options so you and your mother can make an informed decision. Good Luck. You have been such a good and positive caregiver for her. I'm sure she appreciates all that you do.


That is great news about you too! Exact same thing the oncologist, rad.oncologist, and surgeon mentioned the same thing.. possible left over cancer cells. like spots or something. Guess it's better to do a clean up sweep. Mom did well w/ Xeloda, she actually gained some weight which was great! Only bad side effects that she got from Xeloda was the hand and foot rash (look like flea bites) and of course, the radiation at the end and two weeks after, was the worst as it was still working and doing its job. May I ask how long your surgery was for the reversal? Will be thinking of you and KIT :wink:
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Near-complete pathological response !

Postby susie0915 » Mon Nov 20, 2017 8:49 am

ocstacy wrote:
I was stage 2A. After chemo/radiation the surgeon did a sigmoidoscopy and said all that was left was scar tissue and I may not need chemo after surgery. I was thrilled. However, the pathology report showed minimal residual cancer cells and even tho margins were clear and no lymph nodes involved he and my oncologist recommended chemo. I was not happy but my oncologist explained that even though everything was clear, cancer cells can still get into the blood stream and she wouldn't want me to wonder "what if" if I had a recurrence and didn't do the chemo. She did explain the chance of recurrence was very low, but still recommended chemo. Your mother is a little older than I was, so the doctors may not be as insistent but my guess is she will be offered chemo. If so, maybe just xeloda would be a good option. I'm not sure what the protocol would be for your mother's case. I know she has had a rough time dealing with treatment and all the complications that have come up. I'm sure her oncologist will explain all the options so you and your mother can make an informed decision. Good Luck. You have been such a good and positive caregiver for her. I'm sure she appreciates all that you do.


That is great news about you too! Exact same thing the oncologist, rad.oncologist, and surgeon mentioned the same thing.. possible left over cancer cells. like spots or something. Guess it's better to do a clean up sweep. Mom did well w/ Xeloda, she actually gained some weight which was great! Only bad side effects that she got from Xeloda was the hand and foot rash (look like flea bites) and of course, the radiation at the end and two weeks after, was the worst as it was still working and doing its job. May I ask how long your surgery was for the reversal? Will be thinking of you and KIT :wink:

I had my reversal 5 weeks after my resection. I had a blockage and was in the hospital 3 1/2 weeks. My surgeon had to go in a remove scar tissue for the blockage so he said he would do the reversal then. So I only had my ileo for a short time. It didn't have it during chemotherapy, which made it difficult because I did have diarrhea. I wasn't suppose to have my reversal until after I finished chemo. I was happy to get rid of the ileo, as I had problems with the stoma bleeding a lot, but it probably would've been easier to have it during chemo. From what I've read the reversal surgery seems to be much simpler than the original resection.
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5


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