Quick intro -- diagnosed Friday

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Dionca
Posts: 38
Joined: Sat Dec 02, 2017 2:04 am

Re: Quick intro -- diagnosed Friday

Postby Dionca » Wed Aug 28, 2019 11:58 am

Hi Zack:

Regarding Isolated tumour cells. I had the same thing, and couldn't figure out why I was still classified as having only 2 nodes affected, when I had these others floating around. Didn't these count? Anyway, I researched this, and I'm showing my findings below. Long and short is, that they do not count in the staging. They are tiny and can only be shown under a microscope, so I assume they will get wiped out with chemo. So don't worry too much about them!

http://cancerstaging.blogspot.ca/

6.4. Isolated Tumour Cells
Isolated tumour cells (ITC) are single tumour cells or small clusters of cells not more than 0.2 mm in greatest dimension that are usually detected by immunohistochemistry or molecular methods, but which may be verified with H and E stains. ITCs do not typically show evidence of metastatic activity (e.g., proliferation or stromal reaction) or penetration of vascular or lymphatic sinus walls. Cases with ITC in lymph nodes or at distant sites should be classified as N0 or M0, respectively.
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (without oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy

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

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Wed Aug 28, 2019 12:36 pm

Thank you! I was feeling a bit sad today regarding them and that helps quell my fears for the moment. I just thought it means there is more cancer floating around other places/nodes but good point--that's what the chemo is for. I appreciate your first-hand experience Dionca.

How painful was the port installation? Ever have complications with yours?
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

Jannine
Posts: 175
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Quick intro -- diagnosed Friday

Postby Jannine » Wed Aug 28, 2019 4:44 pm

I despised my port at first. I am thin and it's just not possible to pretend that it's not there. A nurse had told me I would hardly notice it, so my expectations were way off. I got a buckwheat pillow to prop up my shoulder on that side so I could sleep on my stomach; otherwise it would have been too uncomfortable to sleep on my stomach. I had no trouble at all sleeping on my side or back, once things healed up.

I felt a lot of pulling and discomfort from the port area for the first couple of months after I had it installed, which I did not like. It didn't *hurt* though. After that I really didn't notice it much. Removal after chemo was over was no big deal. Accessing the port for chemo gets to be routine, and for me was just a pinprick when they access it; much less involved than them searching in my arm for one of my elusive veins. I almost never had discomfort with the bottle attached.

I have a scar where the port was, but it's not bad. It's a lot better than having a port!

Before I got it I wondered if I should ask them to put it on the left side, but if you drive at all it needs to be on the right, so it won't be right under the seatbelt chest strap. I hate to think what it would be like to get in a car accident when there's a port directly under your seatbelt. It's uncomfortable to have the seatbelt rest on the port for any length of time, imo.

Sometimes people do have problems with the port clogging or the catheter migrating to someplace it shouldn't be, but that seems to be the exception rather than the rule.
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 removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

Dionca
Posts: 38
Joined: Sat Dec 02, 2017 2:04 am

Re: Quick intro -- diagnosed Friday

Postby Dionca » Wed Aug 28, 2019 5:20 pm

Port installation was a breeze - they give you twilight sedation, so you don't feel any pain. It was a bit sore while healing, and I sleep on that side, but with some pillow readjustment was ok.

I felt having a port was the best thing ever - I would put some Emla cream on it (with a little saran wrap over it to keep it from smearing on my clothes), before I went to chemo and I didn't even feel the needle going in at all. A couple of times, I forgot the Emla, and as Jannine says - it's just a pinprick. They can use it for bloodwork as well as chemo, attach the "take home pump" to it and flush the port, all without any discomfort. So much better than having needles in your veins.
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (without oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy

KathyLynn
Posts: 66
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Quick intro -- diagnosed Friday

Postby KathyLynn » Thu Aug 29, 2019 2:12 pm

I’m so glad to hear that everything is going well.
I also had ITC and had no clue what to do about it
I had two opinions from oncologist that said I did not need treatment for ITC. So, I didn’t. I still think about it. But they said it was one, and it was out of me. There’s not much on them. That I could find that was up to date. But with having chemo, that would definitely knock them bad boys out. Lol.

Take Care
KathyLynn
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3

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

Re: Quick intro -- diagnosed Friday

Postby horizon » Sat Aug 31, 2019 2:05 pm

Sorry you have to get chemo Zack but you got this! I chose to do Xeloda and initially was dead-set against getting a port. After my first Oxi infusion I was seriously reconsidering that and this forum talked me into getting a port. Zero regrets and details in this thread: viewtopic.php?f=1&t=24924&p=171782&hilit=port#p171782
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: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Sun Sep 01, 2019 5:42 pm

So the 15 was actually a misprint -- it was the total number of lymph nodes sampled. So 2/15.

The pathologist issued a retraction and fixed it.

Regarding the port, will be meeting with the oncologist on 9/3 and taking it from there. I'm currently leaning getting a low profile power port due to everyone's suggestion and first-hand experiences and then probably a 3-6 month Xeloda cycle if they'll do that. Can I insist if they try and insist I get Folfox?

Thanks Horizon for giving me all of your valuable info--we seem to be on a very similar path :-) I read your old post and see it's the way to go.
Thanks KathyLynn for keeping in touch and commenting.
Dionica and Jannine-- sounds like I'm going to go this route, it'll have to be on the right side, which is good because I sleep on my left. I'm ready for the discomfort, what can we due except suck it up :-p Hoping I don't get any complications!

Will touch back after Tuesdays' meeting. Thursday is surgery followup to see how my healing is going.
Overall I'm feeling great, with the only discomfort being my C section wound. It swells up like a Seroma except when I keep underwear on it pushing it down. Went to starbucks today and walked around town with the wife. It's nice to feel almost normal again. Despite this, I am still not going to be stupid and lift anything >10 lbs.

Hope everyone is doing well!
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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horizon
Posts: 1515
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Mon Sep 02, 2019 11:37 am

Zackattack wrote:Regarding the port, will be meeting with the oncologist on 9/3 and taking it from there. I'm currently leaning getting a low profile power port due to everyone's suggestion and first-hand experiences and then probably a 3-6 month Xeloda cycle if they'll do that. Can I insist if they try and insist I get Folfox?


Are they giving you an option for how long your treatment is? With me I was told "you have lymph node involvement so six months of chemo". The only two choices I had to make was Folfox or Xelox and whether I wanted a port or not.
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?

jts
Posts: 17
Joined: Sat Aug 24, 2019 3:07 pm

Re: Quick intro -- diagnosed Friday

Postby jts » Mon Sep 02, 2019 4:37 pm

Hi. I'm sorry to read about your tumor, and lymphnodes. But I just wanted to thank you for your upbeat post-surgery posts. You are making me dread rectal surgery a little less.

jts
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles

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

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Fri Sep 06, 2019 1:11 pm

Update:

My new oncologist was very open to my treatment. She had no preference between Folfox and Capox. I chose the CAPOX because I would rather take the pills for 2 weeks a cycle instead of bringing home things and trying to sleep with machines pumping into my veins. Personal preference. She recommended 3 months of treatment, I asked if we can do 4, she said sure. I think it'll be a fairly aggressive dose. 130 or 135 (can't remember) oxaliplatin and 4000 mg daily of Xeolda. My research using a body surface area calculator shows I'm approx 1.79m2. Shouldn't the dosage be closer to 4300 or 4600mg daily? Would you guys ask to raise the dose or let it be for the first cycle @ 4000?

She is not an integrative oncologist and told me to stop any natural supplements during this treatment, and I will/have. I was hoping to add at least PSK/turkey tail mushroom but trust her judgment. I understand that antioxidants are bad for chemo as we need the cell walls to break down --are there any supplements that are safe to combine with Xelox that I can ask her about? I'm going to continue D3 5000iu.

I'm having the powerport put in on Friday the 13th :wink: and i'll let it heal for 11 days. She said I could just get IV injections but from everyones feedback here, I opted for the port for easy blood draws and Oxal infusions.

Due to my best friends wedding on Oct 12th, I'm doing my start-date of Chemo 9/24 so the wedding will fall on the off week of Xeloda. That's 4 weeks and a few days after my surgery from Aug 21st.

JTS--good luck buddy, it's manageable and you will do this. Every day will get better after the surgery and just have some faith that the way you feel on day 2 isn't nearly as good as you'll feel on day 7 and each day ahead of that keeps getting better. I was shocked how much less bad it was than expected. When are you scheduled for?
jts wrote:You are making me dread rectal surgery a little less.
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: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Fri Sep 06, 2019 1:24 pm

Zackattack wrote:Update:

My new oncologist was very open to my treatment. She had no preference between Folfox and Capox. I chose the CAPOX because I would rather take the pills for 2 weeks a cycle instead of bringing home things and trying to sleep with machines pumping into my veins. Personal preference. She recommended 3 months of treatment, I asked if we can do 4, she said sure. I think it'll be a fairly aggressive dose. 130 or 135 (can't remember) oxaliplatin and 4000 mg daily of Xeolda. My research using a body surface area calculator shows I'm approx 1.79m2. Shouldn't the dosage be closer to 4300 or 4600mg daily? Would you guys ask to raise the dose or let it be for the first cycle @ 4000?

She is not an integrative oncologist and told me to stop any natural supplements during this treatment, and I will/have. I was hoping to add at least PSK/turkey tail mushroom but trust her judgment. I understand that antioxidants are bad for chemo as we need the cell walls to break down --are there any supplements that are safe to combine with Xelox that I can ask her about? I'm going to continue D3 5000iu.

I'm having the powerport put in on Friday the 13th :wink: and i'll let it heal for 11 days. She said I could just get IV injections but from everyones feedback here, I opted for the port for easy blood draws and Oxal infusions.

Due to my best friends wedding on Oct 12th, I'm doing my start-date of Chemo 9/24 so the wedding will fall on the off week of Xeloda. That's 4 weeks and a few days after my surgery from Aug 21st.

JTS--good luck buddy, it's manageable and you will do this. Every day will get better after the surgery and just have some faith that the way you feel on day 2 isn't nearly as good as you'll feel on day 7 and each day ahead of that keeps getting better. I was shocked how much less bad it was than expected. When are you scheduled for?
jts wrote:You are making me dread rectal surgery a little less.


I was around 3,900 on Xeloda and I was thinking about dropping the dosage in the later stages as the side-effects were getting rougher. It turns out that some of them are permanent. I did six months though. Just remember that you can always increase or decrease down the road.

I had my first infusion five days after the port was installed and it was fine. 11 days should be plenty of time for it to heal.
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

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

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Fri Sep 06, 2019 2:45 pm

Thanks Mike! What permanent side effects did you get from the Xeloda?

I called the Dr. regarding the dose and it is 4 pills during day and 3 at night, that's only 3500mg and i'm 5'11" 140 lbs (1.78 m²
Body Surface Area). I believe I should be around 4300/4600mg and want to hit it strong and am afraid that 3500mg will not be nearly as effective or give the cancer time to adapt--is this a stupid thought? The side effects hopefully won't be too bad at the higher dose for 3-4 months.

The person at her office said just accept the delivery of the 98 pills and if her and I discuss next visit to put it at the higher dose, we can get the additional pills for that.
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: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Fri Sep 06, 2019 3:06 pm

Zackattack wrote:Thanks Mike! What permanent side effects did you get from the Xeloda?

I called the Dr. regarding the dose and it is 4 pills during day and 3 at night, that's only 3500mg and i'm 5'11" 140 lbs (1.78 m²
Body Surface Area). I believe I should be around 4300/4600mg and want to hit it strong and am afraid that 3500mg will not be nearly as effective or give the cancer time to adapt--is this a stupid thought? The side effects hopefully won't be too bad at the higher dose for 3-4 months.

The person at her office said just accept the delivery of the 98 pills and if her and I discuss next visit to put it at the higher dose, we can get the additional pills for that.


My permanent side-effect from Xeloda was hands and feet but only in my hands.

I have neuropathy in my toes but that's from the Oxaliplatin.

You are IIIA and I was IIIB so there may be a difference in dose and duration because of that. I guess that you'd have to ask your oncologist for the reasoning.
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

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Fri Sep 06, 2019 3:25 pm

Sounds like things are moving along and you're ready for the next plan of attack. I'm still far behind but I will be taking the generic oral form of Xeloda while doing radiation, beginning next week. The plan is surgery after that then 6 months of some type of chemo after that.

You're doing great, reading up on it and making sure to figure out if you could take a higher dosage. Wish I had some wise words of advice for you but for now, I'm just here cheering you on.
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

Jannine
Posts: 175
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Quick intro -- diagnosed Friday

Postby Jannine » Fri Sep 06, 2019 7:55 pm

I was on FOLFOX for 6 months so not quite the same thing, but a few comments:

My white blood cells tanked after the first infusion, and as a result I ended up waiting a solid month between my first and 2nd doses of chemo. I found out later that getting neutropenia early is a sign that the chemo is probably doing its thing, so that helped me feel better about it, albeit months later. After that I gave myself neulasta shots at home after each round of chemo, and that kept my WBC count up.

My chemo dosage was reduced by 25% across the board about 4 months in, after my platelet count got lower than they were happy with. Then I think they cut out the Oxaliplatin completely for the last round or two, because my neuropathy got bad enough that I couldn't keep my balance with my eyes closed. I recovered from that problem a few months later, fortunately.

Sounds like you're asking all the right questions. I hope the port installation goes smoothly. Keep an eye on any oxaliplatin side effects you get. If you're interested you can read my updates on how FOLFOX chemo went for me in my thread: viewtopic.php?f=1&t=60501
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 removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear


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