Rectal cancer (Stage 3A) diagnosed late June 2017

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Lee
Posts: 5174
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Mon Sep 11, 2017 6:24 pm

cruzer2012 wrote:Yea I know the feeling. Was diagnosed in July with Stage2. Hope all goes well with you. New to this site and still figuring out how to make a post myself? Trying to connect with like loop ileostomy people to find out about what they eat?


Sorry for butting in, cruzer you might want to check out the United Ostomy Association. Here is their website

http://www.ostomy.org/Home.html

There you will find a lot of ileostomy people. They also have a friendly discussion board like we do.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

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

Postby JJH » Mon Sep 11, 2017 6:59 pm

NHMike wrote:
cruzer2012 wrote:Yea I know the feeling. Was diagnosed in July with Stage2. Hope all goes well with you. New to this site and still figuring out how to make a post myself?Trying to connect with like loop ileostomy people to find out about what they eat?


It's the New Topic button from the forum index. Near the upper right part of the window.

On my screen the New Topic button is near the upper left part of the first screen when viewing the list of all topics. There is also one of these buttons at the very bottom left of the screen. It leads to the "Post a New Topic" screen:
http://coloncancersupport.colonclub.com/posting.php?mode=post&f=1

You can't see the New Topic button when you are reading someone's post. You have to be outside all posts and at the level where you are looking at the list of all topics. If you are inside someone's post the only button you can see is the PostReply button, which is the wrong button to use for starting a new topic.
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

NHMike
Posts: 370
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Sep 11, 2017 7:15 pm

JJH wrote:
NHMike wrote:
cruzer2012 wrote:Yea I know the feeling. Was diagnosed in July with Stage2. Hope all goes well with you. New to this site and still figuring out how to make a post myself?Trying to connect with like loop ileostomy people to find out about what they eat?


It's the New Topic button from the forum index. Near the upper right part of the window.

On my screen the New Topic button is near the upper left part of the first screen when viewing the list of all topics. There is also one of these buttons at the very bottom left of the screen. It leads to the "Post a New Topic" screen:
http://coloncancersupport.colonclub.com/posting.php?mode=post&f=1

You can't see the New Topic button when you are reading someone's post. You have to be outside all posts and at the level where you are looking at the list of all topics. If you are inside someone's post the only button you can see is the PostReply button, which is the wrong button to use for starting a new topic.


Sorry, old-age Xeloda brain fart on my part. Yes, it is on the left, not the right.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 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%).
Surgery Scheduled: 10/30/17

NHMike
Posts: 370
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Sep 13, 2017 7:13 pm

My life seems to back to full-blown busy mode. I got up early yesterday and worked out for 45 minutes and felt great. 15 minutes of Yoga-type stuff (stretching and abs), then 60 minutes of dumbbell and barbell and bodyweight training and a 1-mile run. I got my heartrate up to 172 (just as a test) and I didn't feel any stress. The rest of the day was great outside of having some car issues which turned out to be a neighbor's car issues.

Today I didn't even have time to workout as I had a lot of errands to deal with and work as well. I had some GI issues today though they weren't as severe as they had been in the past. I think that I'm pretty busy the rest of the week too. I think that taking too much fiber messed me up on Monday. It might have been too few calories too. I had a lot of carbs Monday night which may be why I felt good on Tuesday morning.

I received an email from the pathologist that read the Genomic testing stuff.

In the first assay, they looked for 50 target fusion transcript genes found in solid tumors and didn't find any.

The second assay looked at 91 genes and found KRAS ENSP and ENST variants. The first is at the protein level and the second is the transcript label. The therapeutic implication is that won't work well should they be needed. He gave me links to a few papers to read up on this stuff. His language was far more technical than what I put here. My son told me that he looked up KRAS and it appears to be a fragile gene. One nucleotide variant can turn it into a cancer machine. So I am KRAS mutant. He said that KRAS wild means healthy.

They also found 2 other variants but there isn't enough known about these to be of use clinically at this time. But my tumor sample might add to their database so that some researcher down the road could find it useful for clinical purposes or drug development. Basically, we're still very early innings on figuring cancer out. What makes me hopeful is knowing that there are researchers working on this stuff.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 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%).
Surgery Scheduled: 10/30/17

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

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

Postby JJH » Wed Sep 13, 2017 9:55 pm

NHMike wrote:My life seems to back to full-blown busy mode. I got up early yesterday and worked out for 45 minutes and felt great. 15 minutes of Yoga-type stuff (stretching and abs), then 60 minutes of dumbbell and barbell and bodyweight training and a 1-mile run. I got my heartrate up to 172 (just as a test) and I didn't feel any stress...

Do you know what kind of surgery they have planned fot you (e.g., open LAR, lap-assisted ULAR, etc.)? The reason I ask is because it might have some impact on your exercise program. If your surgery involves a large incision, you might be vulnerable to an incisional hernia if you apply too much pressure in the abdominal area. There are weight-lifters on this forum who have had to have hernia repair operations because of this.

Just thought I would mention this so that you could discuss this with your surgeon
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

NHMike
Posts: 370
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Sep 14, 2017 5:45 am

JJH wrote:
NHMike wrote:My life seems to back to full-blown busy mode. I got up early yesterday and worked out for 45 minutes and felt great. 15 minutes of Yoga-type stuff (stretching and abs), then 60 minutes of dumbbell and barbell and bodyweight training and a 1-mile run. I got my heartrate up to 172 (just as a test) and I didn't feel any stress...

Do you know what kind of surgery they have planned fot you (e.g., open LAR, lap-assisted ULAR, etc.)? The reason I ask is because it might have some impact on your exercise program. If your surgery involves a large incision, you might be vulnerable to an incisional hernia if you apply too much pressure in the abdominal area. There are weight-lifters on this forum who have had to have hernia repair operations because of this.

Just thought I would mention this so that you could discuss this with your surgeon


It's rectal stuff so that part is with a tube. Then a temporary or permanent bag.

The abs stuff that I do is bodyweight so planks, mountain climbers, stuff on a Roman Chair, Brazilian Crunches, pushups, downward dog, v-ups, bicycle situps, russian twists.

On weightlifting, I've been doing about 120 pounds on the bench press (which isn't very much), 120 on the deadlift (again, not much), 65 pounds on the military press and squats. Weightlifters would generally laugh at these low weights. I don't plan to do this stuff for a while after surgery. The idea is to get everything strong before surgery so recovery is faster.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 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%).
Surgery Scheduled: 10/30/17

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susie0915
Posts: 308
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 » Thu Sep 14, 2017 7:48 am

My surgery was laproscopic so three tiny incisions. I did develop a bowel blockage 4 weeks later and the doctor had to go back in and do surgery do remove the scar tissue causing the blockage. He decided to reverse my ileostomy at that time as well. That incision was vertical down the length of my abdomen. I have developed tiny hernia at the belly button now. It causes no pain. My surgeon does not want to repair unless it causes problems and thinks it wide enough that it should not cause any other issues like another blockage. He did say I could do abdominal exercises and weights but do use a binder around my waist. I don't to a lot of heavy weight lifting but do abdominal exercises such as planks and the 100's that I used to do in my pilates class.

I'm glad you are feeling better Mike.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoid/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 since
surgery to repair blockage. 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
7/17 no change lung nodule
10/17 Clear CT

NHMike
Posts: 370
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Sep 15, 2017 6:49 pm

This has been my best day since last Friday when I finished chemo and radiation. I got in about 20 minutes of working out in my office early this morning and played tennis for 55 minutes at lunchtime. The reason we stopped is that I had to get back to work - it wasn't because of tiredness. I'd say that I'm about 75% of the way back in terms of stamina.

But the best thing was that the razor-blades were gone. My rear end is still a mess but I can go without the intense pain. I still have to keep the area clean and avoid any stress or touching of the area (I just let water run by in the shower). So there is improvement with time.

This also means that I could go back to a more normal (healthy diet) I think. Any changes would be gradual though. I made the adventurous move of eating a Greek Salad for dinner.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 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%).
Surgery Scheduled: 10/30/17

prs
Posts: 104
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Sat Sep 16, 2017 12:29 am

Mike, sounds like you are feeling good. I'm not quite sure how to phrase this on a mixed gender forum, but don't even think about engaging in anything sexual for the next month or so. Your anal canal was not the only internal passage burnt by the radiation!!!!
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: 370
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Sep 19, 2017 8:38 pm

I felt weak and tired this afternoon and this evening. I bumped up the weights by 10-20 pounds and that might be it and I might not be eating enough. I guess I've always worried about gaining weight and doing maintenance calories is something that I've done for so long that it's hard to break out of that.
The weakness feels somewhat like the Xeloda weakness but that might have been lack of food too.

Tiredness might have been due to not sleeping well last night. The combination of high humidity and drinking a lot of coffee may have been the causes.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 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%).
Surgery Scheduled: 10/30/17

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

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

Postby JJH » Wed Sep 20, 2017 2:57 am

NHMike wrote:She's going to do mine late October. I finished my Chemo and Radiation last week and will have an MRI in early October and a meeting a few days later.

I have a suggestion about your signature. Could you amend your signature so that it shows your current status as well as your next planned up-coming interventions? This is so that readers can tell at a glance where you are right now on your journey without having to search through your past posts on various threads.

You could have an updated signature that looks something like this:
SIGNATURE
Mike in NH:
Rectal Bleeding biopsy June 23, 2017, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Chemo (Xeloda) and radiation from 07/31/17 to 09/08/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9 to 1.8 after treatment.
KRAS Mutant KRAS p.Gly12Asp
In 6-week post chemo/radiation recovery period right now
Waiting for MRI early October
Planning for surgery in late October


The link for updating your signature is here. Thanks

http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

NHMike
Posts: 370
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Sep 22, 2017 6:06 am

Thanks for the suggestion. I hope my update works.

I ran four miles and did strength training for two hours and it felt fantastic. I will probably pay for it today. I found strength losses of 10-25 percent for various exercises. That's not surprising for not doing a lot of things for a few months.

This morning, a friend on another board with Stage 3 indicated that she had a liver Met after going through the 28 days of radiation and chemo and that's the sort of things that scares me - if it spreads before or after treatment. Her cancer appears to be pretty aggressive and there was some shrinkage of the tumor but I think that what we all want is for it to be completely gone (happens in about 15% of patients I think). Mine has definitely shrunk because I don't have anywhere near the discomfort that I had before but I'm sure that there's still some of the tumor remaining. Should I request a CT scan while waiting? The CT scan is two weeks from now so having the knowledge sooner might not matter that much outside of my mental health.

On the other hand another friend had a CT scan and his results were a lot better, to the point where he asked his oncologist if the mop-up chemo was necessary. He is going to go through with it though. For the lady, though, it's one thing at a time. Do the surgery, get rid of the tumor and then deal with the liver met. It would seem to me to be somewhat crushing to deal with but I do know that many get through it.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 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%).
Surgery Scheduled: 10/30/17

NHMike
Posts: 370
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Sep 25, 2017 3:50 pm

One thing that I've noticed post chemorad is that my body screams at me for calories if I'm under replenishment levels. My natural inclination is to be a little less than replenishment levels and I'm usually pretty good at that unless I'm under stress. But I get the jitters and sometimes a lot of tiredness when below levels. So that's something that's different in recovery mode.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 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%).
Surgery Scheduled: 10/30/17

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Shana
Posts: 115
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Mon Sep 25, 2017 4:41 pm

NHMike wrote:One thing that I've noticed post chemorad is that my body screams at me for calories if I'm under replenishment levels. My natural inclination is to be a little less than replenishment levels and I'm usually pretty good at that unless I'm under stress. But I get the jitters and sometimes a lot of tiredness when below levels. So that's something that's different in recovery mode.


My body does the same thing. A year ago I would have gained weight, but now my consumption is just keeping my weight steady. I've been told to just listen to my body. Protein drinks and bars help with that.
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

NHMike
Posts: 370
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Sep 30, 2017 6:15 pm

I had bloodwork yesterday and got the results back and things are a little better but H&H and RBC are a bit low. Probably me cutting way back on meat to almost nothing.

Played an hour tennis match on Thursday night and felt pretty good. I was a little tired but that's probably due to the humidity that day. I'm going to see the Oncologist on Tuesday and will ask about additional scans. If someone were to ask me how I felt, I wouldn't be able to say "great", but I'm not too far from that.

I did a full fast from yesterday afternoon to this afternoon (no water, drink or food, just air) and it was fine (just a little hungry). I do wish that I had more time as I have an awful lot to do these days.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 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%).
Surgery Scheduled: 10/30/17


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