Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 04, 2018 8:26 am

Caat55 wrote:Hi Rikimaroo
I totally get how your feeling, I have only one last round and am terrified. The damage this is doing to my body in places and ways no one but I see and feel is awful. I just want a life with my family and this to be done. It takes me a full two weeks to feel sort of right after an infusion, my taste buds and tongue never are right, nor is my tolerance of cold, blowing air.
Hold on.
Susan


Being on chemo for six months feels like it's never going to end but it most of the short-term symptoms do go away.
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

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 04, 2018 8:30 am

Lab results are mostly good. My RBC and H&H are a bit low so I need to do something about that. Maybe get more iron in my diet. The CEA isn't back but I think that the oncologist embargoes it (I don't get to see the results until he allows it) because he knows that I've been anxious about it.

I had a bag leak yesterday. For some reason, coffee and certain other drinks seem to go straight into the bag. Yesterday I had a lot of driving around to do and the bag filled up with coffee faster than I expected to. The coffee went over the level of the wafer and leaked. The Hypafix tape contained most of it but some got out so I stopped and emptied the bag in a bathroom. There were no problems with the bag afterwards but I plan to change it this morning after nine days.
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: 434
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Jul 04, 2018 10:33 am

NHMike wrote:Lab results are mostly good. My RBC and H&H are a bit low so I need to do something about that. Maybe get more iron in my diet. The CEA isn't back but I think that the oncologist embargoes it (I don't get to see the results until he allows it) because he knows that I've been anxious about it.

I had a bag leak yesterday. For some reason, coffee and certain other drinks seem to go straight into the bag. Yesterday I had a lot of driving around to do and the bag filled up with coffee faster than I expected to. The coffee went over the level of the wafer and leaked. The Hypafix tape contained most of it but some got out so I stopped and emptied the bag in a bathroom. There were no problems with the bag afterwards but I plan to change it this morning after nine days.

My cea results never show onlune either. Coffee, wine, tonic water goes straight through.. i change bag every other day, wafer maybe every 5 days.
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: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 05, 2018 9:14 am

Caat55 wrote:
NHMike wrote:Lab results are mostly good. My RBC and H&H are a bit low so I need to do something about that. Maybe get more iron in my diet. The CEA isn't back but I think that the oncologist embargoes it (I don't get to see the results until he allows it) because he knows that I've been anxious about it.

I had a bag leak yesterday. For some reason, coffee and certain other drinks seem to go straight into the bag. Yesterday I had a lot of driving around to do and the bag filled up with coffee faster than I expected to. The coffee went over the level of the wafer and leaked. The Hypafix tape contained most of it but some got out so I stopped and emptied the bag in a bathroom. There were no problems with the bag afterwards but I plan to change it this morning after nine days.

My cea results never show onlune either. Coffee, wine, tonic water goes straight through.. i change bag every other day, wafer maybe every 5 days.


Yup, coffee, tonic water, even nuun though I do get the benefits of it. My son suggested an explanation for this but I didn't really listen to this.

I'm surprised that you change the bag so often. I usually need to change the bag due to wafer issues instead of bag issues. The bags are amazingly durable.

The CEA number was negative news this morning at 4.5. 3.8 and lower is considered normal so it is accelerating. I have a CT scan tomorrow to check. The oncologist considers these values low and he's only seen one case where rising numbers was actually a metastasis and that one was successfully resected. They gave me a bottle of prep to drink before the CT and I drink another just before the scan.

I also need a port flush. You're supposed to get these every 6-8 weeks and my last one was around May 7 because I didn't have an infusion the last cycle. I think that I'm scheduled early next week for that.

So I'm in the CEA worries camp right now. Lots of folks have been there. He checked me out and said that I'm in very good condition physically and I feel fine, though tired this morning.
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: 434
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu Jul 05, 2018 12:58 pm

I change bag cause filter failure, hate to be puffed up. Bag still good, wish the filters worked better. I cover for showering, its sleep that's my issue, lying down.
I have never done port flush
Getting last round of oxil. In a few minutes.
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: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 05, 2018 1:32 pm

Caat55 wrote:I change bag cause filter failure, hate to be puffed up. Bag still good, wish the filters worked better. I cover for showering, its sleep that's my issue, lying down.
I have never done port flush
Getting last round of oxil. In a few minutes.


I don't depend on the filters because they generally don't work. I just burp the bag if it's gassy but it is a pain and I need a bit of privacy to do it and that's not always available.

Nice to be done with the Oxaliplatin.

My neuropathy is up the past few days. It might be the cold temperatures in the office so I'm wearing a long-sleeve even though it's in the 90s outside.

Does this mean that you're completely done with Chemo?
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

benben
Posts: 268
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Thu Jul 05, 2018 2:19 pm

NHMike wrote:
Caat55 wrote:
NHMike wrote:Lab results are mostly good. My RBC and H&H are a bit low so I need to do something about that. Maybe get more iron in my diet. The CEA isn't back but I think that the oncologist embargoes it (I don't get to see the results until he allows it) because he knows that I've been anxious about it.

I had a bag leak yesterday. For some reason, coffee and certain other drinks seem to go straight into the bag. Yesterday I had a lot of driving around to do and the bag filled up with coffee faster than I expected to. The coffee went over the level of the wafer and leaked. The Hypafix tape contained most of it but some got out so I stopped and emptied the bag in a bathroom. There were no problems with the bag afterwards but I plan to change it this morning after nine days.

My cea results never show onlune either. Coffee, wine, tonic water goes straight through.. i change bag every other day, wafer maybe every 5 days.


Yup, coffee, tonic water, even nuun though I do get the benefits of it. My son suggested an explanation for this but I didn't really listen to this.

I'm surprised that you change the bag so often. I usually need to change the bag due to wafer issues instead of bag issues. The bags are amazingly durable.

The CEA number was negative news this morning at 4.5. 3.8 and lower is considered normal so it is accelerating. I have a CT scan tomorrow to check. The oncologist considers these values low and he's only seen one case where rising numbers was actually a metastasis and that one was successfully resected. They gave me a bottle of prep to drink before the CT and I drink another just before the scan.

I also need a port flush. You're supposed to get these every 6-8 weeks and my last one was around May 7 because I didn't have an infusion the last cycle. I think that I'm scheduled early next week for that.

So I'm in the CEA worries camp right now. Lots of folks have been there. He checked me out and said that I'm in very good condition physically and I feel fine, though tired this morning.



I wouldn't be too worried about it Mike. My CEA jumped to 4.5 towards end of treatment, but has continued to drop after treatment. Still sitting at 3.0 as of last test. Have next one in a few weeks along with 1.5 year ct scan. I'd bet your CEA levels will slowly decrease further out from treatment too.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 05, 2018 2:42 pm

benben wrote:I wouldn't be too worried about it Mike. My CEA jumped to 4.5 towards end of treatment, but has continued to drop after treatment. Still sitting at 3.0 as of last test. Have next one in a few weeks along with 1.5 year ct scan. I'd bet your CEA levels will slowly decrease further out from treatment too.


I certainly hope so. Thanks for your helpful data point.
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

User avatar
juliej
Posts: 2841
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Thu Jul 05, 2018 5:42 pm

NHMike wrote:The CEA number was negative news this morning at 4.5. 3.8 and lower is considered normal so it is accelerating. I have a CT scan tomorrow to check. The oncologist considers these values low and he's only seen one case where rising numbers was actually a metastasis and that one was successfully resected. They gave me a bottle of prep to drink before the CT and I drink another just before the scan.

I would't worry too much about that slight CEA increase. Allergies, inflammation in the GI tract, and several other things can bump it up. Most docs want to see a steady increase over a period of time before they are concerned. However, the CT scan is a good idea.

About the neuropathy, it does get better! It takes months and months but eventually most people get back to normal or close to it. Mine got so much better every month that I kept thinking I was "done." Then another month would go by and there were even more changes. I'd say it took a good four months before I really felt like things were considerably better. Then smaller changes for the next eight months. Glutamine helps so if you're not taking it, give that a try.

Good luck on the scan!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 5/11/2018, CEA<1

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 05, 2018 7:04 pm

I think that the increased neuropathy is due to weight loss. I've dropped about 13 pounds in the last four week so maybe there's a higher concentration of the chemicals in my bloodstream. Losing the weight also makes me feel colder but the body thermostat should adjust. For now, I'll just wear a long-sleeve shirt inside even though is in the 90s outside. My fitness center manager speculated that all of the exercise is causing the inflammation which is a possibility.
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

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 06, 2018 11:46 am

CT scan results are back and everything looks quite good. I looked at my exercise chart vs my CEA chart and there may be a correlation. I need to superimpose the charts to get a better view as one is monthly and the other varies between 3 and 4 weeks. That would be an interesting correlation if it holds.
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: 434
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Jul 06, 2018 12:01 pm

Wahoo for you Mike!!!
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
Atoq
Posts: 264
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Fri Jul 06, 2018 1:25 pm

NHMike wrote:CT scan results are back and everything looks quite good. I looked at my exercise chart vs my CEA chart and there may be a correlation. I need to superimpose the charts to get a better view as one is monthly and the other varies between 3 and 4 weeks. That would be an interesting correlation if it holds.

That’s really good news! :D Watch out for overproduction of free radicals! :lol:

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

Rikimaroo
Posts: 132
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Fri Jul 06, 2018 1:46 pm

yay Mike. Thats great news bud!!
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8, more chemo and possible radiation, outlook looks good, staying positive!!

heiders33
Posts: 235
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Fri Jul 06, 2018 3:28 pm

Congrats, Mike! Great news.
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 scheduled


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