Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Aug 25, 2018 5:19 pm

Lee wrote:
NHMike wrote: . . . It's going to be frustrating giving up coffee too. . .
.


Glad to read you are doing better. Is the coffee issue due to your recent ER visit? I would talk to the cardiologist about that if it were me. I used to drink several cups a day when I was younger. Now certain Dr.(s) want me to drink 2 cups a day. Butt I can only handle 1 cup, sometimes less as I grow older. Many days I don't drink it at all.

My resting heart rate tends to hang around 60ish. I thought that was suppose to be in the normal range? Below 60 is a problem, or so I thought.

Lee


Basically no caffeine, probably until I see the cardiologist.

Normal heartrate is around 72. Lower is better absent other problems.

My fitness center manager was with me in the hospital. She said that she sets off the alarms on hospital monitors as her active heartrate can be as low as 41.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

Lee
Posts: 5722
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Sat Aug 25, 2018 5:30 pm

NHMike wrote:Basically no caffeine, probably until I see the cardiologist.

Normal heartrate is around 72. Lower is better absent other problems.

My fitness center manager was with me in the hospital. She said that she sets off the alarms on hospital monitors as her active heartrate can be as low as 41.


My understand, people who are very athletic tend to have a resting heart under 60. Your fitness manager must be very athletic. Must be frustrating in doctor's office or hospital setting. I know I used to get very frustrated with people taking my blood pressure with a cuff, one's I was told I should probably go to the ER. Since my PCP now gives me a paper with vital info INCLUDING blood pressure, problem solved.

Sounds like you are getting your bathroom issues under control. That is awesome

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!

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Aug 27, 2018 12:54 pm

Horrible time yesterday and today. Constant bathroom trips and quite a bit of pain this morning. I had a look at my sleep chart and it's 6 hours of sleep getting up every ten to fifteen minutes to go to the bathroom. A fair amount of blood on the pads. So my problems:

- I didn't have the large poops that I had a few days ago
- The poops were often fairly hard which causes pain
- They are quite small and frequent which causes frustration
- No mucous pieces - these are times when I welcome those
- I needed to go out and wasn't able to this morning
- Going to the bathroom so often interferes with eating and drinking enough
- I had some very dark thoughts
- I'm not getting quality rest

I'm going to drink milk. One thing I noticed is that I had more mucous when I had coffee with cream. I stopped drinking coffee because of the cardiac event and that may be causing more friction.

I'm getting back to fiber but it may take some time to flush through the system.

I have enough supplies for now.

Water is better than toilet paper and wipes. It's just more time-consuming to set up and dry off. I have some bottles on order that may help with that.

I'm going to use Vaseline Intensive Care on my rear end to try to promote healing.

I probably need more carbs for softer stools.

I have not tried the Imodium yet out of worry with interactions with the Cardiac drug.

This stuff kills my productivity.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

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

Postby Jannine » Mon Aug 27, 2018 8:30 pm

Uuuugh that sucks, Mike. I really hope things improve again soon. It seemed like things were going so well. :( It sounds like you have a good plan to try to get things back to where they should be. I hope you get better sleep tonight.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

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mobrouser
Posts: 94
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

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

Postby mobrouser » Mon Aug 27, 2018 10:43 pm

Maybe I missed something but isn't imodium for the opposite of your issues right now?

Now that I'm finished chemo I found that days when I don't eat salad and lots of fruit and veggies result in painfully hard poops the next day. I hope you can find the right dietary balance soon so you don't have hour after hour of bathroom time. I know how frustrating it can be when you have work waiting for you but you can't get to it......

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Mon Aug 27, 2018 11:50 pm

NHMike - Thank you for updating your signature. This will establish the benchmark for the start of your LARS journey.

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CRguy
Posts: 9638
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Tue Aug 28, 2018 12:18 am

NHMike wrote:I have not tried the Imodium yet out of worry with interactions with the Cardiac drug.

I have occasional use of both Immodium ( loperamide ) and Lopressor ( metoprolol )
and to my knowledge there are no significant interactions, and none which I have encountered ... BUTT check with your OWN docs as always !

Unlike many medical professionals ( I am Vet since 1981 ) I almost always start at LOW dose and titrate upwards in any non life threatening situation.

If Immodium dosing says 2 tablets, I start with ONE and reassess if the second is needed.

I have spurious events with SVT ( supra ventricular tachycardia ) and carry metoprolol as needed.
I will use a half tablet to 1 tablet once or twice a year. It IS the preferred cardioselective beta blocker so you should be Ok with using it for your own sitrep.
BTDT my friend

In terms of BUTT cream ... I found Proctosone/Proctosedyl type preparations worked the best for me.
they contain anti-inflammatory, antifungal, antibiotic, local anesthetic and a water resistant protective base to keep the area coated so it can heal

check out this prior post search for more info http://coloncancersupport.colonclub.com ... or_id=1025

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

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

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

Postby ValZen » Tue Aug 28, 2018 9:07 am

Hi Mike, I'm very sorry to hear you've been having a rough time. I'm just a week ahead of you post-op for the reversal and I know how frustrating the frequency issues can be, especially when you're trying to get out of the house! I've been taking a really good probiotic every night: "Bio-K" and psyllium fibre (bulks stools, but keeps them softer too) which I find really helps me. I know we're all very different though and each react differently, but I just wanted to mention it. I started out really slowly with the psyllium: 1/2 tsp. and find that really helps. I hope today's a better day for you.

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Tue Aug 28, 2018 9:57 am

Hi Mike,
Sorry to read that you are having such a tough time. I also was taking a probiotic with a very small dose of psyllium (pills with both together).

I hope it settles soon

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
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
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

benben
Posts: 303
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Tue Aug 28, 2018 1:08 pm

NHMike wrote:Horrible time yesterday and today. Constant bathroom trips and quite a bit of pain this morning. I had a look at my sleep chart and it's 6 hours of sleep getting up every ten to fifteen minutes to go to the bathroom. A fair amount of blood on the pads. So my problems:

- I had some very dark thoughts



Mike, I'm sorry you're having a rough time of it. I had seen many quotes here and as well on LARS research papers that it can take 2 full years after resection for Bowels to continue to improve towards pre-treatment normals. So keep in mind IT WILL GET BETTER.

My experience was vastly different than most. I had LAR with reconnect during the removal of my tumor. So I was connected back up from the get go.
Overall I was thankful with that, but I think to this day I'm still dealing with some inflammation of the bowels as a result of this approach. Of course I was relieved of the temporary ostomy etc..
My experience post surgery was somewhat similar to yours. It was very rough. Like 16-20 bowel movements each and every day. Constant fluctuation from hard to clusters to liquid. This continued on through chemotherapy, but improved slightly after removal of oxaliplatin from treatment and to this day continues to improve. I noticed a couple things really helped normalcy come with my bowel movements. Obviously healing from the chemotherapy, but I also noticed an increase of exercise - specifically biking helped eradicate the sense of urgency. It may be the muscles used in biking and position sustained while biking. But when I started biking again I still had a sense of urgrency from time to time while not biking. Within a month of biking it seemed that urgency was non-existent. I was a bit concerned about long bike trips without bathrooms at first, but interestingly enough I never felt any urgency to go while pedaling away. I really think this specific exercise helped me gain more normal bowel movements. I think timing and healing as well, but I don't think I'd be were I am now in terms of toilette habits had I not spent whats now over a thousand miles on the bike. So while it may be way too early for you to get into some serious biking, perhaps give a small ride a try or even if you have a stationary. Perhaps you'll find some increased function like I did. Today at 16 months out from surgery I am down to a pretty normal 2-4 times a day, which is in line with what I've always been. I do still experience a flare about once a month, but it's usually nowhere like the days of early on. I might have a 6-8 movement day twice a month, but even those seem to still be improving.

Also for cleaning, I installed a removable showerhead that I can just pull off and wash away. It was a very valuable thing to have during those frequent bowel movement days. It cleaned the area thoroughly as well as gave some sense of relief to the overused tissues. Also desitin worked well for me.

Mostly, just remember IT WILL GET BETTER!

Keep on keeping on.
----------------------
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
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!

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juliej
Posts: 2867
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Tue Aug 28, 2018 6:11 pm

NHMike wrote:I'm going to use Vaseline Intensive Care on my rear end to try to promote healing.

You might need something more robust. I recommend Calmoseptine. It really stops the pain and heals the area overnight. It's available at most drug stores or Amazon.

http://www.calmoseptineointment.com/
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 7/13/2018, CEA<1

Phillypatient
Posts: 20
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Wed Aug 29, 2018 3:03 pm

I can second the Calmoseptine. I had a “cooling” effect on the area which is much needed when you spend a lot of time on the toilet.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 29, 2018 5:33 pm

I'm behind on reading this thread. I'm trying to live life at full-speed and my body isn't letting me do so. My manager told me of a new, big project and I have to get up to speed and probably write a spec by next week (probably 100 pages) and then we have to get a lot of work done in a couple of months. It can be challenging just sitting at my desk for long periods of time. One of my sisters is in town and we need to do a family meeting to see how me and my sister are doing.

I am working on the book but just getting the outline in order - at the moment, it's more of a place to gather your ideas and suggestions so that I don't lose them. I have an additional short writing project for a group of traders that I'd like to get done as well.

I definitely don't know how to relax.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Wed Aug 29, 2018 5:52 pm

Jesus Mike
Take a step back
U seriously need to give urself a break ,
( I thought I was bad!!!!!)
U need to pat urself on the back for what u have achieved so far, And allow urself some me time to heal.......
I'm totally in awe of Ur achievements but don't do it at the detriment big Ur physical or. Mental health...,.
I think Ur amazballs......
Relax and enjoy :wink: :wink: :wink:
ADELE XXX
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Aug 29, 2018 9:10 pm

Hi Mike,
This sounds like hell. I have read back on several older post from other reversals, hard to know what's typical because everyone isn't as graphic or direct in their postings. My skin is still to fragile for reversal, your comments about bleeding make me more certain about waiting. I moved wrong the other day and the skin tore, if I don't drink enough water the concentrated urine is enough to make that area sore, bleed as well. I know the the radiation oncologist, surgeon or oncologist never even hinted on how rough this part of the trip is. Take care. I kind of get running at top speed, hoping the momentum of life will carry you though.
Susan
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
CT NED 9/2018


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