Quick intro -- diagnosed Friday

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Maelleous
Posts: 118
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Quick intro -- diagnosed Friday

Postby Maelleous » Mon Aug 26, 2019 9:07 am

Glad to hear things are sounding positive! Let us know how your pathology comes out!
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!
Still NED

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ANDRETEXAS
Posts: 618
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Quick intro -- diagnosed Friday

Postby ANDRETEXAS » Mon Aug 26, 2019 9:29 am

Stay positive ! Keep us posted. All the best. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT

ONE DAY AT A TIME !

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horizon
Posts: 1511
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Mon Aug 26, 2019 10:04 am

Wow, it sounds like you're great after the surgery. I was mashing that pain button like crazy for a day or two. Remember to keep a positive attitude if they tell you there's lymph node involvement and chemo ahead. You can do this!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

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Zackattack
Posts: 34
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Aug 26, 2019 3:48 pm

Thanks, everyone (Horizon, Andre, Maelleous,Jannine, Kathy, Boxhill, and Mike)! Am able to dance around a bit now and each day is getting better. Trying to figure out when I have to use the bathroom is a little difficult (had almost 24 hrs at one point without a BM) but things cleared up last night and were able to use the bathroom like 7 times in a 3 hour span and now I'm great. Pain is minimal except for a cough of sneeze (only happened once and I can fight it off) Still in minor discomfort but walking and getting up doesn't hurt as long as I go slow..

I am mentally ready to take on any next step there may be, totally rooting for no lymph node involvement of course though I feel like I can take on anything near term with a smile.

It was great to walk the halls during the first few days with my pole / IV and try and keep peoples heads up or make them smile. I felt like I had a small impact on the entire 15th floor, nurses included. I was already a very positive person, but I'm turning it up in 2019, regardless of whether we need chemo or not.

Horizon-- thanks dude, will do my best :-)
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

MeAndMine
Posts: 89
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Mon Aug 26, 2019 6:07 pm

You sound like you are doing wonderful Zack! You'll get stronger every day & feel more like your old self again soon. Way to go! Remember to take it easy & give yourself time to recover, then you can hit the ground running!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

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Zackattack
Posts: 34
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Aug 26, 2019 6:22 pm

MeAndMine wrote: Remember to take it easy & give yourself time to recover, then you can hit the ground running

Thanks for the feedback! I'm trying to push myself yet safely.

This question for all who want to respond please:

How easy am I supposed to go?
I'm walking briskly every 45 minutes for 10 minutes or so.
I'm dancing/grooving to the music every hour or two for 5 mins or so without any fast or major stretching motions.
I get up from a chair in about 10 seconds, for the most part using mostly my arms initially for support and gently using my core to stand up straight
The heaviest thing I'm lifting is prob either the Brita water container or a 16 oz glass.

Does that sound perfectly fine for 5 days post? Am I allowed to stand up straight? I was only glued shut (no stitches or staples on my exterior) so I'm nervous and careful of breaking that open if i were to go from 75% posture to 100% -- was mostly thinking of waiting an extra few days before I try.
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

NHMike
Posts: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Mon Aug 26, 2019 6:50 pm

Zackattack wrote:
MeAndMine wrote: Remember to take it easy & give yourself time to recover, then you can hit the ground running

Thanks for the feedback! I'm trying to push myself yet safely.

This question for all who want to respond please:

How easy am I supposed to go?
I'm walking briskly every 45 minutes for 10 minutes or so.
I'm dancing/grooving to the music every hour or two for 5 mins or so without any fast or major stretching motions.
I get up from a chair in about 10 seconds, for the most part using mostly my arms initially for support and gently using my core to stand up straight
The heaviest thing I'm lifting is prob either the Brita water container or a 16 oz glass.

Does that sound perfectly fine for 5 days post? Am I allowed to stand up straight? I was only glued shut (no stitches or staples on my exterior) so I'm nervous and careful of breaking that open if i were to go from 75% posture to 100% -- was mostly thinking of waiting an extra few days before I try.


There is a very wide range of what people can do and it's hard to set guidelines. Your surgeon will probably supply you with directions that include not lifting anything over 5-10 pounds. Sometimes it's 8 for a gallon of milk. And that's for 30 days. My steps tracker said I did 69 steps the day after surgery. Then 98, 508, 931, 1951, 1622, 1960, 3470, 2014, 5448, 8502, 27064. I was in the gym doing the machines with weights from 30 pounds to 80 pounds within two weeks. I avoided stressing the abdominals though. I used the time-tested approach - if it hurts, back off. I did do Yoga poses while in the hospital. Warrior I, II, III, Tree Pose, Split-Leg Squats and some other stuff. I have run into some people that spend a lot of time sleeping after a surgery. Or some that are in pain for quite some time after surgery. My surgeon prescribed 30 days of Oxycodone for me. I have run into people who need it along with a second month of it. People in a lot of pain from surgery likely aren't going to be doing a lot of exercise.

If you are worried about something, then just take it easy for a few days. You can still try thing after a few days. We really don't know how fast your body will heal because it's different for every person. You also don't have a temp ileostomy so you can probably do things that many of us couldn't because you didn't have a hole in your abdomen.

It sounds like you're doing really well.
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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Zackattack
Posts: 34
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Aug 26, 2019 8:07 pm

2/30 something are positive for cancer, Dr looked closer at the CAT scan and confirmed there's currently no nodules that were overlooked.

Seems like we can start chemo at the 4 to 6 week mark post surgery. Wondering if Xeloda or IV is best. Many thoughts...

I'll gather myself and respond to your kind reply later tonight Mike
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

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Zackattack
Posts: 34
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Aug 26, 2019 11:04 pm

NHMike wrote:
Zackattack wrote:
MeAndMine wrote: You can still try thing after a few days. We really don't know how fast your body will heal because it's different for every person. You also don't have a temp ileostomy so you can probably do things that many of us couldn't because you didn't have a hole in your abdomen.


Thanks for the reply, you are right. Listen to my body and I guess what I'm doing is just that. It feels super tight if i were to stretch upwards so lets not do that for now while we heal. I can reevaluate in a few days.

Anyways, so the update is I'll need Chemo (2 out of . Dr. believes 6 months due to my age and how well I can probably handle the side effects. He is referring me to a satellite office nearby for the Chemo. Does the Chemo Dr really matter? I was thinking that either of the two in this office would be fine. I'll start to do research on Xeloda pills vs IV -- does anyone have insight into the efficasy of either? I hate needles and don't want a port, so would prefer pills if the outcome is not changed.

Thanks!
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

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ANDRETEXAS
Posts: 618
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Quick intro -- diagnosed Friday

Postby ANDRETEXAS » Tue Aug 27, 2019 12:14 am

I was on FOLFOX. Xeloda might be different. But for FOLFOX, a port is the only way to go. Of course, I don't mind needles at all, and a port makes it even easier. Whatever you choose, have consultations with your doctor regarding ANY side effects......and keep exercising. I even carried around a pump during walking and running while I was on chemo. Your body will tell you when you are overdoing it. Keep up the good work! Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT

ONE DAY AT A TIME !

NHMike
Posts: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Tue Aug 27, 2019 1:25 am

The usual for Adjuvant chemo is either FOLfOX which is infused 5FU and Oxaliplatin or XELOX with is the pill form of 5FU and Oxaliplatin. You would get a port with either. But you would only get the infusion for a few hours once every three weeks with XELOX. And you’d take the pulls for two weeks with rest on the third week.
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: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Tue Aug 27, 2019 6:19 am

That was a quick post on my phone.

I had three suspicious lymph nodes but they couldn't tell after the radiation so I just assumed the worst at Stage 3B.

I had Adjuvant Chemo about six weeks after surgery. I had a chest port installed after five weeks. It's a minor outpatient surgery and you're awake during the surgery. The port feels sore after the painkillers wear off and it's pretty annoying until you get used to it. The port can be used to draw blood as they draw blood before every infusion, and it's used to infuse the Oxaliplatin and 5FU if you're getting infused 5FU.

The two approaches are FOLFOX which is infused Oxaliplatin and 5FU, or XELOX which is infused Oxaliplatin and 5FU in pill form (trade name Xeloda). If you do FOLFOX, you go to the hospital and get the Oxaliplatin and then take a pump home with you which you wear for almost two days which infuses the 5FU. You do that every two weeks and it can be up to 12 rounds. For XELOX, you go to the hospital for your Oxaliplatin infusion on the first day of the cycle and take Xeloda pills twice a day for two weeks. You then get a rest week. You do that every three weeks and it can be up to 8 rounds.

I am assuming that your Adjuvant Chemo includes Oxaliplatin. If it doesn't, then things are a lot simpler but I think that Stage 3 patients get Oxaliplatin.

There are a fair number of side-effects to both drugs but the Oxaliplatin is usually a lot tougher than the 5FU. I have not read about anyone that had no side-effects from these two drugs but I've seen that the side-effects and their severity range widely from person to person. A lot of side-effects are common though. That's a bit of a longer discussion though.
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

MetastaticEquilibria
Posts: 40
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Quick intro -- diagnosed Friday

Postby MetastaticEquilibria » Tue Aug 27, 2019 6:38 am

NHMike wrote:The port can be used to draw blood as they draw blood before every infusion


Minor point, but not all ports are designed to backflow. Mine isn’t, for example. Useful information to know if it needs to get accessed at a different hospital than the one that put it in.
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

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juliej
Posts: 3036
Joined: Thu Aug 05, 2010 12:59 pm

Re: Quick intro -- diagnosed Friday

Postby juliej » Tue Aug 27, 2019 5:53 pm

Zackattack wrote:I'll start to do research on Xeloda pills vs IV -- does anyone have insight into the efficasy of either? I hate needles and don't want a port, so would prefer pills if the outcome is not changed.

A number of studies have shown that Xeloda and IV 5-FU have about the same efficacy, so no worries there. The advantage of pills is like you said - no needles or pumps. The disadvantage is HFS, which is hand-foot syndrome. It's a common side-effect of Xeloda and causes redness, swelling, and pain on the palms of the hands and/or the soles of the feet. It's not the end of the world, but it's irritating as heck.

Nevertheless, I liked the pills more because of the freedom of when and where I could take them. Once I took my dose while dancing at a huge rave (but drinking water, not alcohol). So anything is possible :D

Juliej
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 6/13/2019, CEA<1

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Zackattack
Posts: 34
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Wed Aug 28, 2019 11:03 am

NHMike wrote:
Zackattack wrote:
MeAndMine wrote: weights from 30 pounds to 80 pounds within two weeks. I avoided stressing the abdominals though. I used the time-tested approach - if it hurts, back off. I did do Yoga poses while in the hospital.


Thanks Mike -- yeah, it sounds like I can try those things soon but I'll be extra cautious to not use my abs.

With regards to the impending chemo. I guess I'll have the port installed in the next few weeks, give it a few days to fully heal, and then begin treatment. Even with the Xeloda, I will need the port (at least for the Oxy) from my new understanding, but I haven't met with the specific oncologists in my local satellite office yet.

I still don't have the number of lymphs sampled, but the pathology report showed 2 lymph nodes positive for cancer ---the majorly concerning thing was 15 isolated tumor cells in addition.

Is this really really bad? The dr. didn't mention this on the phone with me, but to me, it sounds like there were 15 other locations with bad stuff in 'em? He re-reviewed my CAT scan on the phone and said everything looks great.

Should the Chemo, in theory, take care of any isolated cells that may be throughout my body now? What is an isolated cell
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0


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