Rectal cancer (Stage 3A) diagnosed late June 2017

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Aqx99
Posts: 403
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 » Mon Aug 21, 2017 5:42 pm

I never saw the infusion room until I had my chemo counseling before starting. The nurse educator's office is inside the infusion room. It was kind of scary when I first saw it. All of those people sitting in recliners, tubes going in their arms or chests. I was nervous at my first infusion, but everybody there was so nice. One nurse and her assistant are in charge of 6 seats in a section. There are 8 sections in all. They make sure you are comfortable with pillows and warm blankets. Volunteers come around with snacks and drinks. The nurse navigators make their rounds and sit with their patients to chat and see if you need anything. I bring magazines and earbuds for my phone so I can watch videos. Some people sleep. The first time, I thought the 3 hours were going to take forever. It seemed to go quicker the second time.

Ask about the infusions. They will probably be happy to give you a tour of the infusion room, if they have one. Back in the 80s, when my mom was battling breast cancer for the first time, she went to her doctor's office for chemo. They sat her in the same chair they use for blood draws for her infusions.
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

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Mon Aug 21, 2017 7:17 pm

I had Ativan in my infusion and slept through 95% of six rounds of oxi. I'm convinced that is the way to go.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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

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

Postby NHMike » Mon Aug 21, 2017 7:28 pm

Basil wrote:I had Ativan in my infusion and slept through 95% of six rounds of oxi. I'm convinced that is the way to go.


I had to look that one up. I guess that Ativan is an anti-anxiety medication. In general, I try to avoid medication if I can but it's nice to know that there are options.
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

Aqx99
Posts: 403
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 » Mon Aug 21, 2017 9:36 pm

NHMike wrote:
Basil wrote:I had Ativan in my infusion and slept through 95% of six rounds of oxi. I'm convinced that is the way to go.


I had to look that one up. I guess that Ativan is an anti-anxiety medication. In general, I try to avoid medication if I can but it's nice to know that there are options.


My oncologist actually prescribed Ativan as one of the several anti-nausea medications for use during chemo. I have 3 bottles of pills that I carry with me at all times (as recommended by my first chemo nurse) in case nausea sets in. The pharmacist explained how best to use them in chemo counseling. My first line of defense is a Phenergan, second is a Zofran and third is the Ativan.
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

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Mon Aug 21, 2017 10:12 pm

NHMike wrote:
Basil wrote:I had Ativan in my infusion and slept through 95% of six rounds of oxi. I'm convinced that is the way to go.


I had to look that one up. I guess that Ativan is an anti-anxiety medication. In general, I try to avoid medication if I can but it's nice to know that there are options.


There good reasons across the spectrum on why folks might want to avoid medications. And I have no issue with any of them. But all things being equal, I am in favor of making the fighting process as easy as possible. IMO, there's just too much bad mojo that goes with this battle. For me, getting the sedative made the infusion process much easier and that is was enough.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

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

Postby JJH » Tue Aug 22, 2017 2:08 am

prs wrote:...Moist flushable wipes are another option...

Yes, but some so-called flushable wipes are not in fact flushable and can cause a toilet or sewer blockage that can be expensive to repair.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=56683&p=448558#p448558

https://www.theguardian.com/sustainable-business/2015/may/26/disposable-wipes-sewer-toilet-cities-flushable
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

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

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

Postby NHMike » Thu Aug 24, 2017 12:02 pm

I finally got around to setting up the portal at my local hospital and I took a look at the CEA number and it has < 3.8 as being normal. My reading before treatment was 2.7 and after 2.5 weeks, 1.9. So the CEA isn't telling me that much though the lower number is better I guess.

Almost done with week 4 - the radiation folks said that this would be the worst week. I would say that this week is like the rest - one or two surprises and you have a bad day and it can be really disruptive. Basically I'm managing but my sleep rhythms get messed up be various things.

Bills keep coming in from quite a while ago and I pay them when I have the time. The patient portals do make this easier.
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

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

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

Postby NHMike » Fri Aug 25, 2017 2:40 am

Really feeling the Xeloda last night. Swallowing felt funny. Some funny tingling on the back of my arms. Just kind of a feeling in the body that something was different. It didn't help that it was really humid last night but I did have some trouble sleeping. The funny stuff has abated with time. I may not be drinking enough water so I came down early to read email, forums, and drink a glass of water. I felt funny two weeks ago but it was different - it was the 5FU kind of washing through me - but it made me sleepy back then.

I have to remember that this stuff is a CytoTOXIN.
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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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 » Fri Aug 25, 2017 12:53 pm

NHMike wrote:Really feeling the Xeloda last night. Swallowing felt funny. Some funny tingling on the back of my arms. Just kind of a feeling in the body that something was different. It didn't help that it was really humid last night but I did have some trouble sleeping. The funny stuff has abated with time. I may not be drinking enough water so I came down early to read email, forums, and drink a glass of water. I felt funny two weeks ago but it was different - it was the 5FU kind of washing through me - but it made me sleepy back then.

I have to remember that this stuff is a CytoTOXIN.


Hi Mike,

Xeloda and I didn't get along well so we don't see each other anymore :) It's a very effective chemo agent though so it's good that you are tolerating it well for the most part. I had some hand and foot syndrome issues which took awhile to resolve but no problem now.

In regards to your planned surgery, I was able to drive about 10 days post op but didn't travel more than 10 miles distance and waited until I was mostly off of painkillers. I have a probably permanent bag, removal and resection are not possible at this time but maybe down the road if chemo can shrink the primary tumor enough to safely remove it. It takes some time to get used to an ostomy but it saved my life so I tried to embrace the survival side of it and remember that its given me the gift of time to fight this cancer.

Take Care and hang in there!

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

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

Postby NHMike » Fri Aug 25, 2017 10:22 pm

The Xeloda kind of got to me today as well as it had me foggy for quite some time. I debated on taking it this evening but I did.

There was a thread on another forum about heart flutters and fast heartrate with 5FU (intravenous or oral) and his nurse told him to stop taking it. Another person had this problem and they gave him some other drugs to control the symptoms. This apparently affects 2-10% of people and people wind up in the ER with symptoms similar to a heart attack. I haven't had any heart attacks but I have had what I call flutters - that is where you can feel your heartbeat in your body. I've taken my heartrate many times today and it seems normal though. We'll see if there are any issues tonight.

It just feels like the 5FU buildup is getting stronger and stronger today. But I have the weekend off and then one more week where it will likely be even stronger and then the last three days. I will mention this stuff to the doctor through the portal and see if he thinks it's an issue.
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

prs
Posts: 201
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Sat Aug 26, 2017 9:23 am

My Xeloda dose during radiation was only 1,000 mg twice per day, although my weight was 165 lbs. I understand, that based on experience, my oncologist preferred to prescribe a lower dose that his patients could more easily tolerate, rather than have patients stop taking the pills altogether because of side effects.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

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

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

Postby NHMike » Sat Aug 26, 2017 9:29 am

That's quite the difference. I actually felt fine this morning from the Xeloda. It appears that there's a wide range of practice out there.

The radiation, on the other hand, was a pain in the butt.
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
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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 Aug 26, 2017 10:23 am

Those last couple weeks of radiation are rough. You're almost there.
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

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

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

Postby NHMike » Sun Aug 27, 2017 7:49 am

susie0915 wrote:Those last couple weeks of radiation are rough. You're almost there.


Thanks. Though I expect things to be tough this week.

I had a look around at other forums on different types of cancer and I ran into this:

https://csn.cancer.org/node/141473
Long-Term Effects from Abdominal/Pelvic Radiation?

I know that you shouldn't read some things on the internet and these may be bad/worst case type things but It does provide some worrying issues about radiotherapy. Stuff to deal with if and when it happens but that's down the road.
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

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Sun Aug 27, 2017 8:42 am

NHMike wrote:
susie0915 wrote:Those last couple weeks of radiation are rough. You're almost there.


Thanks. Though I expect things to be tough this week.

I had a look around at other forums on different types of cancer and I ran into this:

https://csn.cancer.org/node/141473
Long-Term Effects from Abdominal/Pelvic Radiation?

I know that you shouldn't read some things on the internet and these may be bad/worst case type things but It does provide some worrying issues about radiotherapy. Stuff to deal with if and when it happens but that's down the road.


I don't think your experience should be the same as those receiving gyn radiotherapy.
You're receiving rectal radiotherapy which I'd imagine is somewhat lower in the body in regards to stomach and hopefully in a bit more refined area.

Keep walking the walk.
One step at a time friend :)
best wishes.
----------------------
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
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)


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