Can't believe how scary this whole thing is

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Shieldmaiden
Posts: 6
Joined: Sun Jul 07, 2024 3:46 am

Can't believe how scary this whole thing is

Postby Shieldmaiden » Sun Jul 07, 2024 4:21 am

Not really sure what I want with this post, just clearing my mind a little I guess. Got my 4th infusion of Oxaliplatin on Friday, still completely knocked out by nausea, and sooo, soo tired. Capecitabine 2000 mg x 2 for the next two weeks. Looking forward to be done with chemo, and at the same time so scared. Been experiencing a slight surge in CEA during chemo, onc thinks it's chemo induced. Hopefully she's right, but it scares me.. Bloodwork in five weeks, really not looking foreward to it :roll:
F38 Scandinavia DX March '24: CC Sigmoid
Symptoms starting Jan '24: Stomach cramps. March '24: Macroscopic blood in stool
Pre surgery stageing: Stage 2 - T1-3N0M0
Baseline CEA: <0,6
Late March '24: LAR surgery, no colo-/ileostomy. Clean margins
Pathology: Stage 3B - T3N1bM0, tumor 25 mm x 20 mm, 2/18 LN+, G1-2, LVI and PNI present, MSS
Early May '24: Starting chemo; CAPOX 4 cycles/3 months
Terrified of recurrence..

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Green Tea
Posts: 545
Joined: Mon Oct 24, 2016 10:48 am

Re: Can't believe how scary this whole thing is

Postby Green Tea » Sun Jul 07, 2024 12:06 pm

Shieldmaiden wrote:Not really sure what I want with this post, just clearing my mind a little I guess. Got my 4th infusion of Oxaliplatin on Friday, still completely knocked out by nausea, and sooo, soo tired. Capecitabine 2000 mg x 2 for the next two weeks. Looking forward to be done with chemo, and at the same time so scared. Been experiencing a slight surge in CEA during chemo, onc thinks it's chemo induced. Hopefully she's right, but it scares me.. Bloodwork in five weeks, really not looking foreward to it :roll:

Välkommen -
Velkommen -

Yes, it's certainly scary, but there's a lot of hope ...

What I would suggest is for you to look at past posts of some Stage III patients who managed to get through the whole 5 year surveillance period and reach total remission. I think that this would make your journey less scary

lpas:
memberlist.php?mode=viewprofile&u=93007

testing765
memberlist.php?mode=viewprofile&u=92247

Lycka till,

Shieldmaiden
Posts: 6
Joined: Sun Jul 07, 2024 3:46 am

Re: Can't believe how scary this whole thing is

Postby Shieldmaiden » Sun Jul 07, 2024 12:23 pm

Green Tea wrote:Välkommen -
Velkommen -

Yes, it's certainly scary, but there's a lot of hope ...

What I would suggest is for you to look at past posts of some Stage III patients who managed to get through the whole 5 year surveillance period and reach total remission. I think that this would make your journey less scary

lpas:
memberlist.php?mode=viewprofile&u=93007

testing765
memberlist.php?mode=viewprofile&u=92247

Lycka till,


Tusen takk/thank you so much, Green Tea. I will check out these posts, desperate for hope
F38 Scandinavia DX March '24: CC Sigmoid
Symptoms starting Jan '24: Stomach cramps. March '24: Macroscopic blood in stool
Pre surgery stageing: Stage 2 - T1-3N0M0
Baseline CEA: <0,6
Late March '24: LAR surgery, no colo-/ileostomy. Clean margins
Pathology: Stage 3B - T3N1bM0, tumor 25 mm x 20 mm, 2/18 LN+, G1-2, LVI and PNI present, MSS
Early May '24: Starting chemo; CAPOX 4 cycles/3 months
Terrified of recurrence..

roadrunner
Posts: 516
Joined: Sun Jan 12, 2020 8:46 pm

Re: Can't believe how scary this whole thing is

Postby roadrunner » Sun Jul 07, 2024 5:24 pm

Yeah, it’s scary, and it’s ok to feel that way at first. But you will learn to learn to surf these new waves. The best news in your case is that from a quick look at your profile, your prognosis is very good. I can’t recall the exact %, but a very substantial majority of those in your position go on to be cured. No current metastasis, negative margins, and normal CEA all bode well. If it helps, even a recurrence would not be unmanageable—there are many Stage 4 long-term survivors on here and out there, and you’re Stage 3, a far better situation. My advice is to try to treat this as a challenge you will overcome. That’s not always easy, especially during chemo. Not quite sure how the CAPOX regime works, but you’ve made it through a lot already, and that should give confidence that you’ll do fine with the rest. At the beginning of anyone’s cancer journey, there’s a sense of shock and loss of control. That’s totally natural. The reality is very different. You will find your feet, and with any luck this will soon be something to look back on as a challenge met, a hurdle cleared, at worst.

This is, by the way, a good place to ask questions and get info. There are lots of experienced, helpful folks who post here. Good luck, Shieldmaiden!
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now

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waw4
Posts: 849
Joined: Sun Sep 12, 2010 8:44 am
Location: Durham, NC

Re: Can't believe how scary this whole thing is

Postby waw4 » Sun Jul 07, 2024 9:59 pm

For encouragement, I will say was diagnosed stage 3b 14 years ago and have not had a recurrence so there is certainly hope for you too, even though the routine follow-up checks can be high-stress days.

A significant part of all this can be managing fear & apprehension, which I understand can be a frequent challenge against which you have to help defend your psyche. One way is not to accept your fears or the belief you will get bad news before you actually receive it—e.g. don’t capitulate to your fears if as of yet no actual evidence of them. Something like "don't count your scary chickens before they hatch"! -Bill
Bill's Colonoscopy 6/29/10; Dx Stage I or II
Surgery 7/15/10; Dx Stage III,15/32 lymph nodes
FOLFOX4 start 9/14/10; end 1/20/11 (9 tx)
2021 dx MSH6 Lynch Syndrome positive
(as are my brother, sister & son, but not daughter)
Grateful for 2nd Chance NED time!

Pagola44
Posts: 422
Joined: Mon Jul 03, 2023 7:57 pm

Re: Can't believe how scary this whole thing is

Postby Pagola44 » Sun Jul 07, 2024 11:54 pm

We have a similar diagnosis

I am also terrified for reoccurance

Happy to talk about it (pm me if you like)
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

Shieldmaiden
Posts: 6
Joined: Sun Jul 07, 2024 3:46 am

Re: Can't believe how scary this whole thing is

Postby Shieldmaiden » Mon Jul 08, 2024 12:07 am

roadrunner wrote:Yeah, it’s scary, and it’s ok to feel that way at first. But you will learn to learn to surf these new waves. The best news in your case is that from a quick look at your profile, your prognosis is very good. I can’t recall the exact %, but a very substantial majority of those in your position go on to be cured. No current metastasis, negative margins, and normal CEA all bode well. If it helps, even a recurrence would not be unmanageable—there are many Stage 4 long-term survivors on here and out there, and you’re Stage 3, a far better situation. My advice is to try to treat this as a challenge you will overcome. That’s not always easy, especially during chemo. Not quite sure how the CAPOX regime works, but you’ve made it through a lot already, and that should give confidence that you’ll do fine with the rest. At the beginning of anyone’s cancer journey, there’s a sense of shock and loss of control. That’s totally natural. The reality is very different. You will find your feet, and with any luck this will soon be something to look back on as a challenge met, a hurdle cleared, at worst.

This is, by the way, a good place to ask questions and get info. There are lots of experienced, helpful folks who post here. Good luck, Shieldmaiden!


waw4 wrote:For encouragement, I will say was diagnosed stage 3b 14 years ago and have not had a recurrence so there is certainly hope for you too, even though the routine follow-up checks can be high-stress days.

A significant part of all this can be managing fear & apprehension, which I understand can be a frequent challenge against which you have to help defend your psyche. One way is not to accept your fears or the belief you will get bad news before you actually receive it—e.g. don’t capitulate to your fears if as of yet no actual evidence of them. Something like "don't count your scary chickens before they hatch"! -Bill


roadrunner and waw4, thank you so much for encouragement and information - it means a lot.

CAPOX has been increasingly difficult with every cycle - nausea, muscle cramps, breathing issues and fatigue from the Oxaliplatin. Capecitabine mostly gives me fatigue and stomach issues, really can't wait to get through this final cycle.

I'll try to stay away from the chickens for now - a little easier said than done, though :P
F38 Scandinavia DX March '24: CC Sigmoid
Symptoms starting Jan '24: Stomach cramps. March '24: Macroscopic blood in stool
Pre surgery stageing: Stage 2 - T1-3N0M0
Baseline CEA: <0,6
Late March '24: LAR surgery, no colo-/ileostomy. Clean margins
Pathology: Stage 3B - T3N1bM0, tumor 25 mm x 20 mm, 2/18 LN+, G1-2, LVI and PNI present, MSS
Early May '24: Starting chemo; CAPOX 4 cycles/3 months
Terrified of recurrence..

Pagola44
Posts: 422
Joined: Mon Jul 03, 2023 7:57 pm

Re: Can't believe how scary this whole thing is

Postby Pagola44 » Mon Jul 08, 2024 7:18 pm

BTW I am 1 year post diagnosis and i'm all good for now

except i do have a 'feeling' in my chest which is making me paranoid

let's keep each other updated on our progress
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

Shieldmaiden
Posts: 6
Joined: Sun Jul 07, 2024 3:46 am

Re: Can't believe how scary this whole thing is

Postby Shieldmaiden » Tue Jul 09, 2024 1:13 am

Pagola44 wrote:BTW I am 1 year post diagnosis and i'm all good for now

except i do have a 'feeling' in my chest which is making me paranoid

let's keep each other updated on our progress


I'm hoping you will continue to stay good with no recurrence! You were diagnosed last summer?
F38 Scandinavia DX March '24: CC Sigmoid
Symptoms starting Jan '24: Stomach cramps. March '24: Macroscopic blood in stool
Pre surgery stageing: Stage 2 - T1-3N0M0
Baseline CEA: <0,6
Late March '24: LAR surgery, no colo-/ileostomy. Clean margins
Pathology: Stage 3B - T3N1bM0, tumor 25 mm x 20 mm, 2/18 LN+, G1-2, LVI and PNI present, MSS
Early May '24: Starting chemo; CAPOX 4 cycles/3 months
Terrified of recurrence..

Pagola44
Posts: 422
Joined: Mon Jul 03, 2023 7:57 pm

Re: Can't believe how scary this whole thing is

Postby Pagola44 » Tue Jul 09, 2024 4:28 pm

Shieldmaiden wrote:
Pagola44 wrote:BTW I am 1 year post diagnosis and i'm all good for now

except i do have a 'feeling' in my chest which is making me paranoid

let's keep each other updated on our progress


I'm hoping you will continue to stay good with no recurrence! You were diagnosed last summer?


Yes, last June/July last year , we have a similar diagnosis
Did my chemo and been all clear since but

I have really bad anxiety so every little ache and pain I freak out

Right now I'm freaking out over chest pain but hopefully it's nothing

Hope your chemo treatment goes well!
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

Shieldmaiden
Posts: 6
Joined: Sun Jul 07, 2024 3:46 am

Re: Can't believe how scary this whole thing is

Postby Shieldmaiden » Tue Jul 09, 2024 6:39 pm

Pagola44 wrote:
Yes, last June/July last year , we have a similar diagnosis
Did my chemo and been all clear since but

I have really bad anxiety so every little ache and pain I freak out

Right now I'm freaking out over chest pain but hopefully it's nothing

Hope your chemo treatment goes well!


Sorry to hear about your anxiety, it must make this even more difficult to endure. Glad to hear you've been clean for a year, crossing my fingers it will stay that way, and that your chest pain's got nothing to do with this.

10 days left of my last chemo cycle, hoping it will be the very last..
F38 Scandinavia DX March '24: CC Sigmoid
Symptoms starting Jan '24: Stomach cramps. March '24: Macroscopic blood in stool
Pre surgery stageing: Stage 2 - T1-3N0M0
Baseline CEA: <0,6
Late March '24: LAR surgery, no colo-/ileostomy. Clean margins
Pathology: Stage 3B - T3N1bM0, tumor 25 mm x 20 mm, 2/18 LN+, G1-2, LVI and PNI present, MSS
Early May '24: Starting chemo; CAPOX 4 cycles/3 months
Terrified of recurrence..

taexali
Posts: 19
Joined: Thu Jul 12, 2012 1:41 pm

Re: Can't believe how scary this whole thing is

Postby taexali » Thu Jul 11, 2024 9:56 am

Best of luck to you.

Taexali
(17 years since DX)
Male 78 yrs.
DX 7/11/2007 at age 61 with Stage IVa Rectal with mets to lung
8/2007 to 9/2007 Chemo (Fufa?) & Radiation
12/2007 LAR + Colonic J-Pouch + Ileo
1/2008 to 9/2008 Chemo (Oxaliplatin) 15 Sessions!
11/2008 Ileo reversal
5/2009 Left lower lobectomy, with two(?) lymph nodes removed.
11/2024 Still NED
01/21 to present: Skin Cancer- ugh!

Shieldmaiden
Posts: 6
Joined: Sun Jul 07, 2024 3:46 am

Re: Can't believe how scary this whole thing is

Postby Shieldmaiden » Fri Jul 12, 2024 1:15 am

taexali wrote:Best of luck to you.

Taexali
(17 years since DX)


Thank you so much, taexali. Your signature gives me a little hope
F38 Scandinavia DX March '24: CC Sigmoid
Symptoms starting Jan '24: Stomach cramps. March '24: Macroscopic blood in stool
Pre surgery stageing: Stage 2 - T1-3N0M0
Baseline CEA: <0,6
Late March '24: LAR surgery, no colo-/ileostomy. Clean margins
Pathology: Stage 3B - T3N1bM0, tumor 25 mm x 20 mm, 2/18 LN+, G1-2, LVI and PNI present, MSS
Early May '24: Starting chemo; CAPOX 4 cycles/3 months
Terrified of recurrence..


aquarian_asian
Posts: 52
Joined: Wed Jul 07, 2021 7:07 am

Re: Can't believe how scary this whole thing is

Postby aquarian_asian » Sun Jul 21, 2024 3:32 pm

stay confident..Look at my signature, you will understand the history along with all positive journey
Remove 'terrified of recurrence' in your signature. Your body heals on what your mind says .
cheers.
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal


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