Quick intro -- diagnosed Friday

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Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Thu Sep 12, 2019 11:46 pm

MeAndMine wrote:Good luck tomorrow Zack! I think you'll be pleased to have your port.


Thank you! Have been reading about your journey and hoping that your treatment goes as great as possible. I see you're getting radiation first -- mine was removed, and then resected for better margins so I never got the radiation. Hoping that won't matter. I agree, I think the port will inevitably be a stress-saver and good move.

NHMike wrote:You don't feel anything until a few hours later and the bandage they put on you is annoying. Moving your arms up can cause tugging which is annoying.


Thanks for the tips -- i'll try and mentally prepare for that delayed pain. How many days did you feel sore in total for?

AlexandraZ wrote: It's definitely a good idea to let it heal a little first, if possible.

I think in the US you sleep through it though, right?


Thanks for the reply! Yes, as NHMike said, it's twilight sedation so i'm mostly asleep or won't remember it which is good enough for me. I'm thin and pretty fit, but I'm not jacked up so there shouldn't be too much muscle in the way hopefully.

horizon wrote:completely forget about it in day to day life most of the time.

Looking forward to that =) How many days were you sore for? Just achy or like incisional pain?

annieliz wrote:they let me go after 45 minutes. I did not need any pain killers after the procedure.


Thanks so much for the concise and thorough explanation of your experience--that's exactly the type of info that I wanted to hear--much appreciated. Mine will be done at the Commack location of MSKCC. Also, a totally random side note --my sister's name is Annalise. I guess you're Annie Elizabeth, she's Annalise Elizabeth.

And Punky44 -- can't wait to realize that it was no big deal lol. Each day is one day closer to the end of January -- I'm so looking forward to looking back on this whole experience.

Everyone--I greatly appreciate the support and knowledge you're all providing me and the rest of the forum / newbs. I feel like every experience varies greatly, but hopefully, my situation and this post will help others understand the process.
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: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Fri Sep 13, 2019 3:48 am

Hope you rested well last night and you are ready to get things going today. You'll be back here updating how smoothly it went before you know it!
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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horizon
Posts: 1515
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Sat Sep 14, 2019 3:36 pm

Zackattack wrote:Looking forward to that =) How many days were you sore for? Just achy or like incisional pain?


My memory is fuzzy. I want to say I was generally sore for a couple of days. The healing and soreness wasn't an issue for me luckily.
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?

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Quick intro -- diagnosed Friday

Postby AlexandraZ » Sat Sep 14, 2019 4:31 pm

How did it go? :)
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Sat Sep 14, 2019 4:56 pm

My comments from my thread. I went into the hospital at 7:00 AM.

11:30 AM Day of surgery:
Port is installed and leaving in half an hour. Overall mostly painless. I do feel it though, when moving around.

I went in around 7 and was out before 11 walking out without a wheelchair. It was easy and fast with minimal pain (just a couple of needles). I have to take antibiotics for three days and have to avoid getting water on the port for three days. They gave me Fentynal and an anti-anxiety drug and they worked quite well. None of the fuzzy brain feeling and the effects were very gradual. I was awake but not far from sleep.

Comment from Anne:


Take something for pain this evening. The numbing agent they gave me lasted 10 hours, then I started to feel it. They poke and prod and tunnel through tissue to place the port, it will be sore for a bit. I made it through with Tylenol. Press N Seal works great to cover the surgical site when showering.

7:00 PM Day of surgery

Funny you should mention this. I worked for a few hours this afternoon and then felt really tired and went to take a nap and woke up a couple of hours later. I had some pain in the neck area (that's where I feel things - nothing in the chest). I came down to dinner on the table and didn't feel like eating. The sleepiness might be due to the antibiotics (I took Penicillin 25 years ago and slept for a day), only getting five hours of sleep last night, side-effects of the Fentynal or the other thing they gave me. But I feel like going back to sleep. There's less pain after sitting up for about ten minutes.

Two days after surgery


I took the bandage off yesterday afternoon (was supposed to be removed after one day), and I'm not supposed to get it wet for 72 hours (which is tomorrow morning at around 11:00 AM). I had a look at my chest this morning and noticed a partial ring around my breast that was pinkish. I assume that this was blood that was outside of the surgical field I can see the port sticking out a little and can feel it if I touch the skin around it. I also say the incision near my neck. The range of motion for my neck is decent now though I think that the limitation is still the neck incision and not the port.

I had some abs soreness yesterday afternoon and evening and am not sure what caused it. It's possible that it was walking quickly on the treadmill. I don't think that I lifted much in the way of heavy things before the abs were sore. They felt fine this morning so either muscle teardown and rebuilding or damage healed overnight. I've been very hungry and thirsty since the surgery - I think a reaction to the antibiotics. Took the last one this morning so hopefully things are back to normal tonight or tomorrow morning.

Three days after surgery


I finally took a shower this morning (you're not supposed to get the chest port area wet for 72 hours after surgery) and taped a piece of Saran Wrap over my chest. It might actually have been easier just to wrap it around my body but that would have used more material. Much less pain though I can feel some pulling and pressure doing some things. Walking up stairs with a heavy backpack can strain things - not sure if it's the neck incision or the port itself. But things are getting a little better every day.


That looks like it for what I wrote about the port back then. It looks like I went to the gym two days after the surgery.

The thing about looking at old threads is realizing that people you chatted with aren't around anymore.
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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ANDRETEXAS
Posts: 620
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Quick intro -- diagnosed Friday

Postby ANDRETEXAS » Sat Sep 14, 2019 11:16 pm

I hope all is going well with your recovery.
Last edited by ANDRETEXAS on Sat Sep 14, 2019 11:20 pm, edited 1 time in total.
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
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
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

User avatar
ANDRETEXAS
Posts: 620
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Quick intro -- diagnosed Friday

Postby ANDRETEXAS » Sat Sep 14, 2019 11:17 pm

"The thing about looking at old threads is realizing that people you chatted with aren't around anymore."


This has happened to me, but it makes me strive even more to keep myself as healthy as I can be as a tribute to all those who helped me on my journey.
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
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
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

User avatar
horizon
Posts: 1515
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Sat Sep 14, 2019 11:38 pm

ANDRETEXAS wrote:"The thing about looking at old threads is realizing that people you chatted with aren't around anymore."


This has happened to me, but it makes me strive even more to keep myself as healthy as I can be as a tribute to all those who helped me on my journey.


I feel both of you on this one!
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?

Rock_Robster
Posts: 343
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Sat Sep 14, 2019 11:50 pm

horizon wrote:
ANDRETEXAS wrote:"The thing about looking at old threads is realizing that people you chatted with aren't around anymore."


This has happened to me, but it makes me strive even more to keep myself as healthy as I can be as a tribute to all those who helped me on my journey.


I feel both of you on this one!

Yep me too. It was fine when I was scrolling back through threads, but as soon as I started searching for keywords you can get some really old results. I had to remind myself that of course this is unsurprising - it’s just a shock. One thing I like about forums is that they tend to be biased toward positivity - there is a natural survivorship bias. However the downside is that those that do really well go back to their lives (and good on them!), and we perhaps don’t see and hear the success stories so much.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Sat Sep 14, 2019 11:54 pm

Rock_Robster wrote:
horizon wrote:
ANDRETEXAS wrote:"The thing about looking at old threads is realizing that people you chatted with aren't around anymore."


This has happened to me, but it makes me strive even more to keep myself as healthy as I can be as a tribute to all those who helped me on my journey.


I feel both of you on this one!

Yep me too. It was fine when I was scrolling back through threads, but as soon as I started searching for keywords you can get some really old results. I had to remind myself that of course this is unsurprising - it’s just a shock. One thing I like about forums is that they tend to be biased toward positivity - there is a natural survivorship bias. However the downside is that those that do really well go back to their lives (and good on them!), and we perhaps don’t see and hear the success stories so much.


The person I saw in my thread was Robino. You couldn't forget her Avatar.
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

Rock_Robster
Posts: 343
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Sun Sep 15, 2019 12:01 am

NHMike wrote:
Rock_Robster wrote:
horizon wrote:
I feel both of you on this one!

Yep me too. It was fine when I was scrolling back through threads, but as soon as I started searching for keywords you can get some really old results. I had to remind myself that of course this is unsurprising - it’s just a shock. One thing I like about forums is that they tend to be biased toward positivity - there is a natural survivorship bias. However the downside is that those that do really well go back to their lives (and good on them!), and we perhaps don’t see and hear the success stories so much.


The person I saw in my thread was Robino. You couldn't forget her Avatar.

:)
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

User avatar
ANDRETEXAS
Posts: 620
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Quick intro -- diagnosed Friday

Postby ANDRETEXAS » Sun Sep 15, 2019 1:34 am

That's the one thing I appreciate about those that do hang around. They really help those just beginning their journeys. It was always great when I started mine to ask questions and get advice outside the doctors' offices from those who had previously had the experiences I was going through. It gave me the sense that...hell yes, I can do this! My five-year post-chemo appointment with my oncologist is later this month. Definitely thinking positively, but knowing you're never "cured." Hope I can help others in the future, even if it's just words of encouragement.
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
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
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

User avatar
Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Sep 16, 2019 12:06 am

Feeling okay a few days out now. Was Friday @ 1pm. Friday night began the pain, not the worst but just uncomfortable and it did hurt a bit.
Saturday I was super low energy but it def could have been the super strong edible I took ;-)
Today it feels itchy but I won't scratch it obviously. The redness is still fully there, but doesn't seem infected to me. I looked at it and wasn't too freaked out at myself.
How long should the area around it (1-2" around the implant) remain red?

Overall feeling very good, it just takes a little getting used to having a weird device in your shoulder/chest.
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: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Mon Sep 16, 2019 5:15 pm

Glad you're feeling good over all and hope the adjustment to the port is easy for you, Zack. You are doing well and putting one foot in front of the other to get to where you need to be.
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

User avatar
Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Sat Sep 21, 2019 7:22 pm

MeAndMine wrote:Glad you're feeling good over all and hope the adjustment to the port is easy for you, Zack. You are doing well and putting one foot in front of the other to get to where you need to be.


I'm finally adjusted to the weird feeling. I thought I'd be used to it only when it's about to be removed lol.

Happy to see you are progressing too, how's the radiation/etc treatment going thus far? How are you feeling?


Does anyone have good tips for the first chemo treatment, such as ice chips, sweet flavored things in your mouth to distract from the smell, maybe crossword puzzles or tablet, etc.

Thanks! I start Sept 24th (this upcoming Tuesday). I'm so excited to start so we get the ball rolling on this. Sounds weird to say but I just want to know how it feels, make sure I don't have a terrible adverse reaction physically etc.
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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