Rectal cancer (Stage 3A) diagnosed late June 2017

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susie0915
Posts: 550
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Location: Michigan

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

Postby susie0915 » Tue Nov 21, 2017 6:58 pm

Aqx99 wrote:My oxaliplatin infusion is 3 hours, as well. I was supposed to be finished last week, but my platelets were too low. I tried again this past Monday and my platelets were even lower. I go in this coming Monday to try again.


I hope you get to finish Monday. I know you have been looking forward to it. Did you feel better with an extra two weeks off?
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 21, 2017 7:09 pm

Three hours is quite a long time to be sitting at the hospital or infusion center. Sounds like something I'd want to do relatively local.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

veckon
Posts: 111
Joined: Thu Jul 27, 2017 7:44 am

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

Postby veckon » Tue Nov 21, 2017 8:05 pm

NHMike wrote:Three hours is quite a long time to be sitting at the hospital or infusion center. Sounds like something I'd want to do relatively local.


If you ever have an infusion related reaction (mild allergy, heart attack, etc.) your infusion time will increase too. Mine was around two hours originally and was about eight by the last treatment. Yes, eight hours.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Aqx99
Posts: 279
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Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Tue Nov 21, 2017 8:21 pm

susie0915 wrote:
Aqx99 wrote:My oxaliplatin infusion is 3 hours, as well. I was supposed to be finished last week, but my platelets were too low. I tried again this past Monday and my platelets were even lower. I go in this coming Monday to try again.


I hope you get to finish Monday. I know you have been looking forward to it. Did you feel better with an extra two weeks off?


I've been feeling fine. I thought my numbers were going back up. That's why it was a shock to me that they were lower after an extra week off. I'm really hoping that my oncologist lets me get my infusion on Monday. We are getting very close to me being fresh out of chemo (or possibly still on the chemo pills) for my trip in December. I was hoping to be recovered more by then.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
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 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

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susie0915
Posts: 550
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Tue Nov 21, 2017 10:43 pm

Aqx99 wrote:
susie0915 wrote:
Aqx99 wrote:My oxaliplatin infusion is 3 hours, as well. I was supposed to be finished last week, but my platelets were too low. I tried again this past Monday and my platelets were even lower. I go in this coming Monday to try again.


I hope you get to finish Monday. I know you have been looking forward to it. Did you feel better with an extra two weeks off?


I've been feeling fine. I thought my numbers were going back up. That's why it was a shock to me that they were lower after an extra week off. I'm really hoping that my oncologist lets me get my infusion on Monday. We are getting very close to me being fresh out of chemo (or possibly still on the chemo pills) for my trip in December. I was hoping to be recovered more by then.

Oh I understand. My oncologist allowed me to stop at 6 rounds instead of 7 because we were traveling for my son's wedding and I wanted a month to recover from chemo before the wedding. Of course I told her I would do number 7 if she thought it would be make a difference. Hopefully you will be able to get the last infusion and ring that bell.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

Aqx99
Posts: 279
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Wed Nov 22, 2017 12:32 am

susie0915 wrote:Oh I understand. My oncologist allowed me to stop at 6 rounds instead of 7 because we were traveling for my son's wedding and I wanted a month to recover from chemo before the wedding. Of course I told her I would do number 7 if she thought it would be make a difference. Hopefully you will be able to get the last infusion and ring that bell.


My oncologist told me that because of my age, she really wants me to get this last one in. She said sometimes she lets patients stop one early, but really stressed that she wanted me to do all 6.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
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 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

Aqx99
Posts: 279
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Wed Nov 22, 2017 12:36 am

NHMike wrote:Three hours is quite a long time to be sitting at the hospital or infusion center. Sounds like something I'd want to do relatively local.


Yeah, and they can get longer depending on how you react to the chemo. There is also the waiting time just to get into a chair. My first treatment my appointment was for 9:15, I didn't get in the chair until after noon. Holiday weeks are also crazy busy because they will be trying to fit 5 days of patients into 4 days. Plus there is always the chance of being sent home without treatment due to low blood counts. I've had that happen 3 times now.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
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 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Nov 24, 2017 7:32 am

I ate more than usual yesterday but less than a normal Thanksgiving. There was a lot of stuff that I chose not to eat because I can't get the nutrition from it. I had to empty the bag out more often because of the extra food and probably won't eat until late this morning. I was also really tired from the drive (and sore bottom from the sitting) and slept really well. My 4:30 AM watch alarm woke me up to change the bag. Normally I wake up at 1 AM and 4:30 AM without the alarm but I may set two alarms for the times when I'm really tired.

We met at my mother's house with relatives and it was rather nice. Everyone there knew I had cancer but I don't think that most were freaked out about it as things are going fairly well. I did learn more about my Brother-in-law's Sister-in-law's case with cancer (she didn't survive) - I think that she could have survived but she didn't get the proper care for several reasons. I see a lot of folks here doing quite well and it provides me with a decent amount of hope for the future.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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CRguy
Posts: 9323
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Sat Nov 25, 2017 1:26 am

Hey NHMike,
Gotta say man .... YOU have got it HAPPNIN'

seriously : this topic IS an epic discussion of your Journey and an open ended invite for members to follow you and get some info
BEFORE
DURING
AFTER ......

I joined AFTER all my initial stuff was completed
I would have LOVED to have found this forum before I needed it

KEEP ON bro'
this topic IS what this forum is all about

sorry I have not weighed in prior to this ...
BUTT ... HEY you were doing a GREAT job on your own !!!!!!
I see a lot of folks here doing quite well and it provides me with a decent amount of hope for the future.

I see folks like YOU ... and I know the future IS BRIGHT

Cheers and Harmony
ON the healing Journey

Namasté
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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susie0915
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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 Nov 25, 2017 9:33 am

CRguy wrote:Hey NHMike,
Gotta say man .... YOU have got it HAPPNIN'

seriously : this topic IS an epic discussion of your Journey and an open ended invite for members to follow you and get some info
BEFORE
DURING
AFTER ......

I joined AFTER all my initial stuff was completed
I would have LOVED to have found this forum before I needed it

KEEP ON bro'
this topic IS what this forum is all about

sorry I have not weighed in prior to this ...
BUTT ... HEY you were doing a GREAT job on your own !!!!!!
I see a lot of folks here doing quite well and it provides me with a decent amount of hope for the future.

I see folks like YOU ... and I know the future IS BRIGHT

Cheers and Harmony
ON the healing Journey

Namasté
CRguy

Totally agree. I wish I would've found this forum when I was going through everything. I didn't join until after I finished either. But, I'm glad I did as it is quite helpful to read about everyone's journey and maybe give a little advice based on my experience.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Nov 27, 2017 11:05 pm

Just read a paper on KRAS G12D immunotherapy drug. And it works well though not completely. They chose G12D because it’s so common.but I don’t see why they couldn’t use the same approach with the other mutations. Too la e for me though but nuc3 to know if I get a recurrance.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5178827/

My son explained what they did. They data mined receptors on the cell surface and found four solutions targets and used a retrovirus to make guided missiles for G12D tumor cells. This means that we could have a cure for KRAS G12D without chemo, radiation and surgery. I believe that they could use a similar approach to do the same for the other KRAS G12 mutations as well. Science is moving at a torrid pace.

Played five minutes of ping-pong today. I was quite careful. Toughest part was picking up the balls off the floor.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 28, 2017 8:11 am

Just did the last shot of Enoxaparin. Glad to be done with that.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Nov 30, 2017 9:13 pm

Met with the Oncologist at Dana Farber this afternoon after blood draws (only 3 tubes!) and he said that my numbers look great. He said that the CEA was 0.6 - I hope that I heard that right. I will look on the hospital portal in a few days to verify it. He suggested 4-8 rounds of Folfox or Capox (I guess he doesn't like to call it XELOX) at 4,000 mg/day. 14 days on, 7 days off. He asked me if I was going to get a chest port and I indicated that I plan to given what I've generally heard from others here.

He was quite upbeat about my results - something about a complete pathological response which happens in 10-20% of cases. So I need to gird up my loins for mop-up chemo. He's going to send a note to my local oncologist and I sent him a note this evening so I'll likely get an appointment soon to discuss what we're going to do.

I took the commuter rail into DFCI and it consumes a lot of time though driving might consume the same amount of time because the appointments were 3:30 and 4:30 and driving out of Boston would be very difficult. I walked a total of six miles through it all and didn't eat much during the day because there were long periods of time where I couldn't empty the bag conveniently. So I typically fast on those kinds of days.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Aqx99
Posts: 279
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Thu Nov 30, 2017 9:42 pm

NHMike wrote:Met with the Oncologist at Dana Farber this afternoon after blood draws (only 3 tubes!) and he said that my numbers look great. He said that the CEA was 0.6 - I hope that I heard that right. I will look on the hospital portal in a few days to verify it. He suggested 4-8 rounds of Folfox or Capox (I guess he doesn't like to call it XELOX) at 4,000 mg/day. 14 days on, 7 days off. He asked me if I was going to get a chest port and I indicated that I plan to given what I've generally heard from others here.

He was quite upbeat about my results - something about a complete pathological response which happens in 10-20% of cases. So I need to gird up my loins for mop-up chemo. He's going to send a note to my local oncologist and I sent him a note this evening so I'll likely get an appointment soon to discuss what we're going to do.

I took the commuter rail into DFCI and it consumes a lot of time though driving might consume the same amount of time because the appointments were 3:30 and 4:30 and driving out of Boston would be very difficult. I walked a total of six miles through it all and didn't eat much during the day because there were long periods of time where I couldn't empty the bag conveniently. So I typically fast on those kinds of days.


Since you seem to be a pretty active guy, I would suggest you do the Capox if you get a choice. That is what I am doing for my adjuvant chemo. (Had my last infusion on Monday!) I was able to work full-time, 12 hour shifts while in treatment. I just found it easier to go in once every 3 weeks for an infusion, then take the 2 weeks of pills, than getting infusions every 2 weeks plus an additional trip for disconnect.

I'd be careful about fasting with the ileostomy. You are still producing digestive juices and they will fill your pouch with watery output if they don't have food to react with. You are better off to eat very small snacks throughout the day. That will consume the digestive juices and slow the transit time to your pouch. Also once chemo starts, an empty stomach means nausea.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
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 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

heiders33
Posts: 43
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Thu Nov 30, 2017 9:43 pm

Just wondering, how does he decide between 4 and 8 rounds?
35 year-old female
May 2017: Dx at T3N2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX


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