Rectal cancer (Stage 3A) diagnosed late June 2017

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O Stoma Mia
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Location: On vacation. Off-line for now.

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

Postby O Stoma Mia » Sat Nov 04, 2017 6:47 pm

Here is what the BWH FAQ says about their pathology reports:
    Your doctor may want to wait for ALL test results to be completed before contacting you; thus, it may take a week or more for a full battery of results to be available. Pathology tissue biopsies take approximately 48 hours to process and make into glass slides to be reviewed by the pathologist. Additional tests may be necessary on the tissue to make a final diagnosis. From the time of your surgery to the time the results are available to your doctor is usually 5 to 7 days.
    Ref: http://www.brighamandwomens.org/Departments_and_Services/pathology/Patient/FAQ1.aspx
Here is a list of the pathologists there:
.
http://www.brighamandwomens.org/Departments_and_Services/pathology/About-Us/Faculty.aspx

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

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

Postby NHMike » Sun Nov 05, 2017 2:04 pm

Thanks for that list. That is an amazingly long number of pathologists. I’m not all that concerned about it right now. I’m in the mode of getting used to the stoma, figuring out the diet and daily routine and the smooth running of the household while I’m more or less of an invalid. Things are going reasonably well so far.
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 » Mon Nov 06, 2017 7:19 am

Tuesday

It’s pretty hard to sleep in a hospital bed at night as there are folks coming in to take your vitals every few hours, check your IV, take blood, empty your catheter, drain the stoma, drain the drain tube blood along with the noise and lights of the ward. So I did get some sleep but not as much as I should have but that’s the way it goes. I think that risk is pretty high the day after surgery so they want to keep a close eye on you.

I had a lot of chest congestion from 7:00 to 7:30 AM and I attribute that to the irritation from the chest tube. One of the nurses suggested using a cough pillow and that worked out when it was within reach. When it wasn’t, I had to clutch. Coughing was big pain but for a very short time. This took a few days to resolve though my voice was still weaker than usual at discharge.

TMI bucket: You can pass gas from the anus. I thought that it was shut off but it isn’t so stuff can come out there like mucus. They provide mesh underwear and put in pads to catch stuff.

I ordered breakfast but bland stuff was recommended so I ordered white toast, broth, and cranberry juice. It took me about five hours to eat because my body didn’t feel like eating even though my mind was very hungry. It was a little painful to sit and eat.

The major pain was on the left side and I tried to figure out if it was the wound, just general pain or related to the catheter. The catheter bag filled up fast because of the amount of fluids that they were pumping through me. The stoma bag filled up fast as well.

I did get up and walk three times. One round of 1 trip around the ward, one round of 2 trips around and one round of 3 trips around. The anesthesia wore off today so pain was unmasked. The left-side pain comes and goes and maybe urinating relieves it. They want me to crank up the fluids as they removed the ureter stents and the bladder has to wake up. I think that they were worried about infection if I didn’t get more through the bladder. In normal GI operation the body reabsorbs water from the large intestine but this is bypassed with my setup. So I could get dehydrated without enough water. An indication of enough water would be urinating and less in the bag.

One of the Surgeon’s doctors said that I will have to inject Lovenex into my thigh for the next month. I am scared of needles and close my eyes when I am stuck. I asked my wife if she would do it and she volunteered to do so. But I don’t know who will do it. I kind of pushed the unpleasant idea out of my mind.

The surgeon came and told me that things went well and that I might be down-staged depending on the path reports. I don’t know if the post-surgical treatment will be any different.

I had a long training session with the Stoma Nurse and she went through the making of a pattern, cutting the piece that attaches to the skin, applying the adhesive and putting them on. She went over suppliers as well. They will leave me with 10 bags and a tube of adhesive so I need to order more when I get home. Theoretically, it should be five bags per month but they give you ten of them per month. I’d rather be safe than sorry. I will order some on my own (without insurance) if I have to.

My friend George came down to visit. I wasn’t expecting him and I was a bit surprised that he took the time and expense to come down here. He only stayed for a little while. I would guess that he was scoping out the trip. He thought that I was doing quite well.

I tried Tylenol 650 mg. I couldn’t tell whether or not it helped. Dinner was toast and chicken soup. So about 400 calories for the day. My body wasn’t hungry but my mind was. This hospital has a fantastic menu and choosing from all of the options was challenging. I sent my wife the menu and she said “you have got to be kidding” - it had so many options. My roommate was impressed with the food and he’s a retired doctor.

I managed to empty my stoma bag but I forgot to squeeze out the gas.



Wednesday

I slept more soundly at night because I was tired from all of the activities on Tuesday. I emptied fluids (urine, bag) and had decent pain standing or moving. I took two Tylenol and Oxy 2.5 in the afternoon and 5.0 in the evening. The Oxy made my head feel a little funny and made me sleepy but it took about 50% of the pain off. I couldn’t tell whether or not it was worth it. But I tried very little and then a lot for pain meds and I was undecided.

The doctors came early this morning on rounds and removed the wound seal. There were staples underneath but I didn’t find out about those until I looked later in the day. There was one large horizontal wound in the middle and one small one on the left and two small on the right. I assume that these were for tubes to go in. I didn’t see the two on the right because they are obscured.

The goal for me was three rounds of walks but one of the nurses joked that they should put in eight boxes for walking so I walked the eight and made the boxes myself. The doctors and nurses were also concerned with my urine output. I thought that I was drinking a lot of water but most of it was going into the bag. So they added fiber packets and I ordered more fiber from food. Things only improved a little.

I called the insurance company covering my short-term disability and they confirmed that they got my information from my surgeon. So that’s one less worry to deal with.

I got the injection training and practice on a roll of tape.

Breakfast was a scrambled egg, applesauce and toast and it took me about five hours to finish it with all of the interruptions and with me not really feeling like eating a lot. I added two packets of salt to the food as Had leg and arm cramps last night.

The surgeon came to visit mid-afternoon and asked how I was doing. She thought that I could go home Thursday instead of Friday but I said that it would make my logistics difficult.

My urine output is still too low for the day. I tried to crank it up later in the day and wound up with water going into the wrong pathway and had a coughing fit which was very painful.



Thursday

The left hip pain seems independent of the pain medication but I still took a Tylenol as I was debating ramping up medication for one last try.

Urine output has improved to 250-300 per shot but it’s still blood-tinged and I asked a nurse for a scale and she went to fetch one. They had this huge electronic scale that looked like it cost $2,000 and I weighed about seven pounds less than a week ago and that seemed reasonable to me.

I went to the visitor’s lobby and tried out a number of exercises. I wanted to do a few more but didn’t have the opportunity. I did a squat, crane pose, warrior pose, Neck rolls, Arm circles, Upper Body Twists, Rotator cuff stretches and Tree pose.

The doctors came in for rounds early in the morning (6 AM) and said that I should take Imodium and I was given three or four for the day. The bag material became much less watery and urine output increased. I’m still doing about 275 ml at a time. I think that my body wants me to go at a certain pressure level. Their target is 500-1500 ml in the bag and I was at 1800.

I took a lot of walks today, many to refill my pitcher. It may be that the overall amount of pain is decreasing with whatever is getting pressed healing.

I ordered a big breakfast to experiment: oatmeal, cream of rice, whole wheat toast, scrambled tofu. It was all good and filling. Dietary recommendations are to eat a bunch of small meals. This makes sense given the limited size of the bag.

Someone came in and told me that they were thinking of discharging me today but I said that I didn’t think that I was ready and my ride was scheduled for tomorrow so I didn’t hear anything more on discharge today. I also talked to someone about the discharge time and process and then sent email to my ride to schedule pickup at 12:30 PM on Friday.

The nurse came in for another teaching session on giving myself shots of Lovenex. I applied the alcohol to my leg but I was supposed to apply it to the roll of tape. So she asked me if I wanted to just inject myself or still test on the tape. I decided to just inject myself with her coaching and did it and it burned for about ten minutes and I could still feel it 30 minutes later. But it was done.

I had a look around work and considered starting a small project but decided against it. Things were relatively quiet and I spent time resting and doing some social media.

I ordered glazed salmon, macaroni and cheese and sweet potato for dinner and a chocolate chip cookie for dessert. I had the first three and saved the cookie for Friday. I have had no problems with any of the foods that I’ve tried. Several more walks, pitchers of water and I skipped pain meds for the rest of the evening. Then I wrote up these logs.

I feel like I’m ready to go home tomorrow.
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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Robino1
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Facebook Username: Robin.lawthers
Location: Florida

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

Postby Robino1 » Mon Nov 06, 2017 8:11 am

Your logs will certainly help someone down the road.

When I had my resection, I didn't take pain meds either. I did finally agree to them for sleeping but it really didn't work. I would stay awake until after the effects wore off. I hate the feeling of not being in control and pain meds just make me a zombie. Awake yet not able to do anything.

I think I recovered faster. I know I was out in three days as opposed to the normal five. Walking helped tremendously.

Have your ride bring a pillow to place between your seatbelt and your belly. I carried a pillow with me everywhere.

I'm really glad you're doing well :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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

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

Postby NHMike » Mon Nov 06, 2017 8:40 am

Friday

One of the things that overshadowed my hospital stay was my roommate who had some kind of infection. He had a lot of doctors in his room including a few people from the infectious disease department and he had been on a bunch of different antibiotics. They apparently figured out what he had (might have been more than one thing) and that morning, the doctors and nurses treating him were wearing gowns. There was a notice on the door of the room about contact precautions added. I also overheard them asking him to take precautions because of the possibility of passing something on to me. I had been careful from Wednesday using the public toilet instead of the shared one in the room when it was easy to do. My roommate had immune system issues which is why he caught this thing. A normal immune system shouldn't catch this and should be able to deal with it if it did. I just didn't need to be sick while recovering. I felt like I was in pretty good shape and ready to leave anyways.

I had a very good sleep last night as they didn't do vitals every few hours on us and they didn't need to come and change his medications. The pain thing was still an issue and I took some Tylenol. Additional rest cleared it up. Also peeing helped. I'm pretty sure that it's a bladder pressure issue.

6:20 AM Doctors' Rounds: they looked at the wounds and I described the pain situation and he said that it's probably a muscular thing and that it was a good sign. I indicated that maybe I was doing too much. I did squats, tree pose, warrior pose and a bunch of other stretches and range of motion exercises yesterday. He wants to dial back the Imodium to one or two and make it algorithmic instead of fixed. He wants me to keep up with the fiber packets as well.

I asked about removing the staples and that could be done at the post-op appointment. I also asked about driving and he said anytime, as long as not on medication.

I really wanted to take a shower but I was afraid to use the bathroom so I did I washed up with a towel as best I could. I also changed underwear and pads. I saw the mucous that leaked out and it didn't smell or anything. Just black-colored. Some had got on the bed protector too.

8:00 AM Ordered scrambled egg and whole wheat toast. I did not want to eat much before the long ride home so that I wouldn't have to change the bag along the way.

8:53 AM The IV Nurse took out one of th elines and redressed the other one. I had an Imodium, Tylenol, Ibuprofin and fiber packet. The Nurse went to assemble a team for discharge. I kept my ride informed via email. One note: flat pushups, fist pushups and dips are good exercises for working the arms and shoulders for getting out of bed when you can't use your abs.

9:30 AM Got out clothes for trip home and packed up.

11:00 AM An intern came in and removed the tubular loop that held the stoma outside the body. The intern had to push the bag back onto the body attachment and asked me to brace myself. I just tightened my abs and there were no problems.

11:15 AM Stoma change education. It's in another note (the description) but it took quite some time because my stoma was so active. The nurse was very patient. I think that I will do this first thing in the morning in the future so that I won't have to deal with stuff coming out while I'm changing the bag.

Discharge stuff was next. A list of documentation and directions and a form to sign. Then injecting myself with Lovenox. I got an ETA from my ride and the nurse called for a wheelchair and brought me to the valet area where I was picked up.

The trip home was uneventful. Zero pain on the ride home.

My son drove me to the pharmacy to pick up the first box of injections. I left the Oxy prescription with them but didn't get it filled. I'll decide on the Oxy next week.

I was weak and revenous and asked my wife for toast but she gave me a large bowl of chicken balls, rice porridge and soy sauce instead. Very good stuff.

I contacted the Visiting Nurse service and set up an appointment for a visit.

11:00 PM Had three packets of Benefiber and emptied the bag and the consistency was thick. It's more comfortable changing the bag at home where then enviroment is controlled.

Total walking for the day was about 1/2 mile.
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
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Mon Nov 06, 2017 9:38 am

Sounds like you are doing very well. Keep it up.
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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O Stoma Mia
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Location: On vacation. Off-line for now.

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

Postby O Stoma Mia » Tue Nov 07, 2017 5:52 am

Is your pathology report going to have your MSI status? I don't see it mentioned in your signature.

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

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

Postby NHMike » Tue Nov 07, 2017 6:48 am

O Stoma Mia wrote:Is your pathology report going to have your MSI status? I don't see it mentioned in your signature.


It’s MSS. I just learned that I’m KRAS G12D. A few people asked about their variants last night and I did a lot of reading and talking to my son and I think that I understand most of the overall taxonomy of CRC. From what I can tell, it’s already mapped out and it would be nice to have a shorthand for the treatment protocols and prognosis.

I will add my information to my signature.

My MSI information was determined by Immunohistochemistry And tumor genomic testing.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Nov 07, 2017 6:55 am

An infectious roommate would have stressed me out beyond belief. Having to share a room with someone is difficult enough, but for him or her to have some contagious infection! OMG...my blood pressure! It sounds like you handled it extremely well and are on a road to a quick recovery.

It's good to know that local visiting nurses are available even when the procedure was done out of state. We had wanted MGH to set us up with a transitional nurse as our local hospital had done for husband's 1st colectomy, but they didn't have anything for us. Now I know we can contact our local nurse center and take care of it ourselves. Thanks!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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

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

Postby NHMike » Tue Nov 07, 2017 7:22 am

mpbser wrote:An infectious roommate would have stressed me out beyond belief. Having to share a room with someone is difficult enough, but for him or her to have some contagious infection! OMG...my blood pressure! It sounds like you handled it extremely well and are on a road to a quick recovery.

It's good to know that local visiting nurses are available even when the procedure was done out of state. We had wanted MGH to set us up with a transitional nurse as our local hospital had done for husband's 1st colectomy, but they didn't have anything for us. Now I know we can contact our local nurse center and take care of it ourselves. Thanks!


The ventilation system at B&W was very, very good as there were really no odors while I was there. I'd assume the same thing at MGH. My roommate had taken my plastic basin too (they were on the sink and I guess he took one for washing up and the other for shaving) so I just used a wet cloth. Basically you do what you have to. I did consider switching to a private room as well but not very hard.

The impression that I got from the Stoma Nurse was that VNA folks are available around the country. The office for the one that I'm using is 1/2 mile from my house though those are the corporate offices. All of the nurses drive around to their clients and don't really go into the office. So it's kind of a virtual organization. The nurse that visited a few days ago was an Emergency Room Nurse at Lawrence General (I consider Lawrence a war zone) so she must have considerable experience dealing with medical issues. You live in a relatively isolated area and quite far from MGH so it sounds like they didn't have the contacts. Glad that you have a workable solution locally.

The part I like is that they'll take care of the ordering of stoma supplies. That was one of my biggest concerns.

How is your husband doing. I haven't seen too many posts from you lately though I don't read every thread here.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Nov 07, 2017 9:28 am

My husband is doing pretty well. He's on Day 6 of his second round. The cold sensitivity to the Ox- infusion last Wednesday subsided that same day and went completely away by Friday. He hasn't experienced any side effects to the Xeloda so far except a bit of stomach discomfort following his PM dosage last night with dinner. I think he might not have had sufficient caloric intake. It was only the second time he has had to take medication for that, so far.

Our surgeon friend recommended he take zofran and tagamet/cimetidine on a regular basis just as a preventive measure. He already takes 800mg cimetidine daily except during the week of his infusions. They are 800mg tablets, but maybe he can split them up and have 400mg with morning Xeloda and 400mg with nighttime Xeloda.

He's working extra long hours these days - an average of 12+ hours a day, 6 days a week. He's on his feet the entire time but he's not doing hard manual labor. I'm not happy about the long days but he wants to be working hard in an effort to stay strong and to keep living a normal life. I just hope he isn't overdoing it.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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

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

Postby NHMike » Tue Nov 07, 2017 9:36 am

mpbser wrote:My husband is doing pretty well. He's on Day 6 of his second round. The cold sensitivity to the Ox- infusion last Wednesday subsided that same day and went completely away by Friday. He hasn't experienced any side effects to the Xeloda so far except a bit of stomach discomfort following his PM dosage last night with dinner. I think he might not have had sufficient caloric intake. It was only the second time he has had to take medication for that, so far.

Our surgeon friend recommended he take zofran and tagamet/cimetidine on a regular basis just as a preventive measure. He already takes 800mg cimetidine daily except during the week of his infusions. They are 800mg tablets, but maybe he can split them up and have 400mg with morning Xeloda and 400mg with nighttime Xeloda.

He's working extra long hours these days - an average of 12+ hours a day, 6 days a week. He's on his feet the entire time but he's not doing hard manual labor. I'm not happy about the long days but he wants to be working hard in an effort to stay strong and to keep living a normal life. I just hope he isn't overdoing it.


I'm very pleased that he's doing a lot better. I do recall how much effort you put in for him back in the early days and I assume continue to do so. I'd worry about overdoing it as well. I put in a long day working yesterday and was pretty worn out in the evening. And I had a lot of reading to do as well. I hope that things continue to go well for him.
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 » Tue Nov 07, 2017 4:08 pm

mpbser wrote:He hasn't experienced any side effects to the Xeloda so far except a bit of stomach discomfort following his PM dosage last night with dinner. I think he might not have had sufficient caloric intake. It was only the second time he has had to take medication for that, so far.


My psychiatric nurse practitioner suggested eating a tablespoon of peanut butter with my medications to prevent stomach issues.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Nov 07, 2017 4:51 pm

NHMike, Yes, the caretaking has been pretty steady this whole time. It's a lot of work especially with my own career. He might be moving part-time to a location about 1.5 hours away for work, staying there 4 nights/week or so. That will make life much more difficult as I make his breakfast, lunch, and dinner every day.

Aqx99, thanks for the tip. Husband might have to do that for breakfast on the days he isn't here at our home in Vermont. Toast, applesauce, peanut butter...
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

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

Postby O Stoma Mia » Tue Nov 07, 2017 8:18 pm

In your November 14 meeting with the surgeon you could ask her about the long range effects of your type of surgery, including the LARS (Low Anterior Resection Syndrome).

Here is a link to some information on that, and to a photo of your type of LAR.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48796&p=370958#p370958


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