Reversal Journal -- just had the surgery this morning.

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Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Sat Aug 26, 2017 4:36 am

@ozziej --- thank you and I really appreciate your response on that. I actually wondered, because I didn't really feel like I fit the definition of "clustering". I am tall and thin and have always had a very fast metabolism and long before I had cancer, I have gone frequently my entire life. Never less than 2-3 times a day, with typically 3-5 times a day pre-cancer. It is hard to remember because I likely had cancer for a year or two, maybe longer, where I was going 6 times a day or so.

Where I am at now is a little more frequent than I would like, but it is becoming very tolerable. I have no urgency, I feel like I can get it all out (what is there at the time) and feeling very blessed to be at this stage already.

Day 22 & 23 -- last two days have been fantastic. I have even started venturing into a few vegatables with no ill effects. I lost track of my journal yesterday some, but ate a pickle before bed, and even a few green olives. Also felt confident enough to meet some work people for lunch yesterday, and with my wife for dinner.

8/24/17
4:30am smallish well formed -p
5:28am smallish well formed -p
5:40am took 1/3 immodium
7:15am drank some black cherry juice, two eggs and toast, with a hot earl grey tea post meal (trying this method to try and go a full amount at one sitting) - Metimucil after
8:27am medium sized, well formed -p
10:39am medium sized, well formed -p
3:20pm one small well formed. -p
4:37pm two medium-small well formed -p
5:20pm Dinner was Salmon in teriyaki sauce, white rice, and had to risk some diced cucumbers with a little ginger dressing over it. I also broke and had a piece of my wife's brownie and some milk (lactose free).
5:33pm Medium sized load -p
8:29pm small/medium -p
8:30pm took 1/3 immodium

8/25/17
5:43am - medium/small -p
7:30am - cream of wheat + banana + metimucil
8:30am - medium/small -p
9:20am - hot earl grey tea
12:05pm - Met some people from work for lunch, had a stuffed baked potatoe, fish dip appetizer they ordered, and an unsweet tea
1:30pm - medium well formed -p
2:00pm - small well formed -p
2:28pm - drank some metimucil
2:31pm - medium/small well formed -p
Lost track, I believe I had two or three more bowel movements before bed.
At dinner I had baked BBQ chicken wings and even some celery from a restaurant we went out to. The fact that I feel confident enough to go out for lunch/dinner has me feeling blessed!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

User avatar
susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Journal -- just had the surgery this morning.

Postby susie0915 » Sat Aug 26, 2017 7:16 am

This is awesome. You seem to really be responding well, and figuring out what will work for you. Just takes time to know what will work with a little planning. We are all just living with a new normal, and have to do what makes us comfortable to live our lives as normal as possible. Good Luck.
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: 702
Joined: Fri Jul 21, 2017 3:43 am

Re: Reversal Journal -- just had the surgery this morning.

Postby NHMike » Sun Aug 27, 2017 7:09 am

It's nice to get a feel for the amount of time to normalization. I realize that everyone is different but getting a feel for what may be in my future is helpful.
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).

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Tue Aug 29, 2017 5:37 am

So Sat was decent until the night, Sunday was pretty good and Monday was my best day ever. Honestly Monday felt like a normal day...

I lost track of my log on Sunday and Monday.

8/26/17
3:50am - small bit -p
5:09am - large load -p
5:48am - small amount -p
6:00am - drank Metamucil
7:30am - scrambled eggs (w/ mushrooms, sweet peppers, cheese, and green onions) and toast. With Orange Juice and Coffee -- getting risky.
8:18am - small -p
12:00pm - buffalo meat burger with fish dip
1:03pm - medium -p
5:04 pm - chicken Marsala with roasted potatoes and green bean casserole
6:05pm - large well formed -p
6:30pm Drank some Metamucil
6:36pm - another medium/large sized well formed -p
6:37pm -- thought I was done, had to go right back, large amount, a bit looser, think I might should pop half an immodium to avoid a restless night. -p

Sunday we had our fantasy draft (3+ hours at a restaurant), I took some immodium to be safe, but it worked out just fine. I didn't have to go once during.

Monday, I think I might have went 6 times, and honestly if that would be the new norm, I would be perfectly fine with that. I ate a large dinner and even tempted fate with some carrot cake and didn't wake up once last night. I even started running. Wife and I are doing the couch to 5k plan and ran 1.5 miles over 30mins (1 min on & 1 min off on the first day). It wasn't easy having very little exercise in the past 8-9 months, but have to say, I was worried it would stimulate the bowels, but it worked out just fine. I'm really happy with were I am at. Also on Monday I didn't do Metimucil or take any immodium. I even ate some veggies with dinner.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

NHMike
Posts: 702
Joined: Fri Jul 21, 2017 3:43 am

Re: Reversal Journal -- just had the surgery this morning.

Postby NHMike » Tue Aug 29, 2017 5:43 am

Sounds absolutely wonderful.

It sounds like a normal life or something approaching it quickly.

Love Couch to 5K.
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).

User avatar
susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Journal -- just had the surgery this morning.

Postby susie0915 » Tue Aug 29, 2017 8:06 am

This is awesome progress. I remember when I started running again, felt so good. I did walk during my chemo treatments. I loved being able to get through those workouts. Made me feel like I was back to normal. Hope things continue to improve for you.

Susie
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

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Wed Sep 06, 2017 7:50 am

Thanks Susie, it sure has, part of why I haven't posted every day anymore, will just give weekly updates. May not have power for a long while soon though so not sure when I'll post again.

Updates -- sorry it has been a while. Up and down, but mostly up. Still have a little bit of frequency with bits of clustering mixed in. Overall though, very manageable.

Preparing for Irma now (in South Florida) -- can't get a break these days!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

User avatar
susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Journal -- just had the surgery this morning.

Postby susie0915 » Wed Sep 06, 2017 12:54 pm

Oh no. Prayers for you and your family with this looming hurricane. Hope all are safe.
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

User avatar
susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Journal -- just had the surgery this morning.

Postby susie0915 » Wed Sep 06, 2017 12:57 pm

I'm so glad you're continuing to improve. I told someone once, when going through chemo sometimes you don't realize how crappy you feel until you start feeling better. I finished my adjuvant therapy in April 2016. I remember thinking the following Christmas, "I'm really feel normal again". My oncologist told me it takes two years to really get all that chemo out of your system. Again, glad you're feeling better and prayers for you and your family.
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

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Sat Sep 16, 2017 8:55 am

Give you all some updates, have been few and far between because we STILL do not have internet from Irma. Minimal damage, but I realize now how much better I am doing after hauling giagantic branches and logs to the road. My wound is finally fully healed so going to go in the pool for the first in a long time today.

I have been able to fully east salads again with zero issues!!!!!! So happy about that, never realized how nice it is to eat fresh greens. I have been eating a vegatable heavy diet with no problems. I actually think it has made things better.

I did make a mistake yesterday and made buffalo cauliflower tacos. The buffalo screwed me up. Was doing awesome until then. Had to take immodium for the first time in a week to stop the clustering. Still a little rough this morning, but not bad.

I fly to the University of Pitt in two weeks to get my last quarterly scan (part of the clinical trial I am in.) Optimimistic it will be clear, but always get nervous when it gets close.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Journal -- just had the surgery this morning.

Postby Basil » Sun Sep 17, 2017 6:37 pm

Congrats on your progress. I logged on to hopefully see this thread dying to the second page. Not because I don't appreciate it, I do, but because I would interpret that as a sign all is well. Mine is a week from Monday and I'm counting the days. The bag and I have never seen eye to eye.
40 y/o male, kids 6&9
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

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Thu Sep 21, 2017 3:23 pm

Good luck Basil!

You will have up and down days going forward. Sometimes it is hard to pin-point what caused it but overall doing really well.

Sometimes have hemorrhoid issues from going a lot, and saw tiny flecks of blood on my toilet paper that freaked me out for a second until I realized it def was hemorrhoids. (all the hemorrhoid symptoms plus just had a flex sig less than 2 months ago) The site of any blood will freak me out going forward.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

User avatar
susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Journal -- just had the surgery this morning.

Postby susie0915 » Thu Sep 21, 2017 4:06 pm

That is true. I had blood in July kind of freaked me out, didn't have any more after. I mentioned it to my surgeon when I saw him last month and he kind of nodded like okay so. He examined me and said everything felt good. But blood is always frightening, as I thought that before the cancer the blood I would occasionally see was hemorrhoids.

Also, good luck Basil. I know you've been waiting for this as I know how you feel. I only had by ileo 4 weeks and we just didn't get along very well. I know you'll do great. There are many options available for all the digestive issues we deal with. But it takes time and patience.
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

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Sat Sep 23, 2017 8:21 am

Well the past couple of days haven't been the best. Been back to work so eating out at lunch and it is hard to know what all the ingredients are so having some issues. Frequency and slight clustering are the main culprits. I decided to add some Metamucil pills (hate drinking the liquid powder version) and that seemed to help a lot. I have more trouble getting it to all come out and some straining (trying to avoid that) than I do with any diarrhea or anything so decided more fiber was the better option. It has left my stomach feeling unsettled a lot the past two days but today has been a big improvement.Burping and feeling gassy a lot the past few days too.

I get scanned for my clinical trial the day after tomorrow, so praying that goes well again! Mentally and physically don't think I could go through this again!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

User avatar
susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Journal -- just had the surgery this morning.

Postby susie0915 » Sat Sep 23, 2017 8:48 am

It is tough to pinpoint causes of a bad day. Sometimes it just happens without notice. My gastro just kept telling me it takes time and it has not been very long for you. The Metamucil wafers are good too. Not fully evacuating rather than diarrhea seems to be the main issue for us low rectal cancer patients, which leads to going a little at a time frequently. Very annoying. The goal is to try had train your body to go the same time every day. The MD Anderson bowel control program may help. You can find it online. Hope you have better days coming up.
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


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