NEW-Need some positivity here.

Please feel free to read, share your thoughts, your stories and connect with others!
Basil
Posts: 270
Joined: Thu Mar 16, 2017 12:33 pm

Re: NEW-Need some positivity here.

Postby Basil » Tue Dec 17, 2019 8:26 pm

I like reading these stories. Had my six month blood draw and checkup (no scans) and all was well. In and out in 29 minutes. That’s 2.5 years from stage 3. Hope you all are doing well.
40 y/o male, kids 8&11
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
1 year scans - clear
2 year scans - clear

DonutHead
Posts: 64
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Thu Dec 26, 2019 1:17 pm

Sorry, everyone for the delayed response. My scans and tests were clear so 2 years following surgery NED. My CEA was 0.9, which was new and some diverticulitis, but all the docs suggested I was doing quite well. No more colonoscopy follow ups for the next 5 years, which I find strange??? so will get another from a different doctor in a year to be on the safe side. My oncologist wants me to have one last 6 month interval CT scan in March before reverting to a year, so fingers crossed I can get some more distance between my anxiety bombs soon!

Hope everyone is well, moving forward, and had a Happy Christmas with your families! Thanks for being there for each other!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
Still Here!

Beckster
Posts: 420
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Thu Dec 26, 2019 6:28 pm

DonutHead wrote:Sorry, everyone for the delayed response. My scans and tests were clear so 2 years following surgery NED. My CEA was 0.9, which was new and some diverticulitis, but all the docs suggested I was doing quite well. No more colonoscopy follow ups for the next 5 years, which I find strange??? so will get another from a different doctor in a year to be on the safe side. My oncologist wants me to have one last 6 month interval CT scan in March before reverting to a year, so fingers crossed I can get some more distance between my anxiety bombs soon!

Hope everyone is well, moving forward, and had a Happy Christmas with your families! Thanks for being there for each other!


Congrats and Merry Christmas!! ...I enjoy reading all of these great reports!
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18, 6/19, 12/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0
Clear Colonoscopy 10/17, 11/19 :D

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Dec 29, 2019 4:43 pm

DonutHead wrote:Sorry, everyone for the delayed response. My scans and tests were clear so 2 years following surgery NED. My CEA was 0.9, which was new and some diverticulitis, but all the docs suggested I was doing quite well. No more colonoscopy follow ups for the next 5 years, which I find strange??? so will get another from a different doctor in a year to be on the safe side. My oncologist wants me to have one last 6 month interval CT scan in March before reverting to a year, so fingers crossed I can get some more distance between my anxiety bombs soon!

Hope everyone is well, moving forward, and had a Happy Christmas with your families! Thanks for being there for each other!



Thank God! I have been waiting for this!!!! So glad you are well and you are putting this dx behind you! You give us such hope!
You are a God send, truly. You helped me during such a dark time in my life. Strangers helping strangers turned warrior friends. Merry Christmas and a happy healthy new year! May you grow very old, wrinkly and gray!
Lydia
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

AmyG
Posts: 350
Joined: Tue Dec 25, 2018 8:08 pm

Re: NEW-Need some positivity here.

Postby AmyG » Sun Dec 29, 2019 6:21 pm

I get so much hope with threads like these. It could seriously be me that's NED with no reoccurrence. It has to be someone, right? :lol:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: NEW-Need some positivity here.

Postby Malidosa » Mon Dec 30, 2019 9:50 pm

Hi

I was just diagnosed with cancer today. I’m sure you understand where I am mentally.

I read through this entire thread over the weekend as I suspected I might be having to take this journey. I literally I’m starting from square one like teacher and am hoping for some positivity and to meet you all.

I’m looking for anything. I’m scared. I read the posts and get motivated to fight. But then look at my kids and fear leaving them soon.

I’m waiting on a meeting with a colorectal surgeon to determine next steps.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

DonutHead
Posts: 64
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Tue Dec 31, 2019 12:49 pm

Welcome to the forum...we have all been there from the start and most of of us are here now. You are in good company and we are here to help. Being afraid is normal, I am still afraid. Once you are diagnosed, your world seemingly changes, but in reality it doesn't. You now have a fight on your hands, but you are not alone. you have doctors, family, friends, strangers on the forum. We are here for you! You have a million questions...ask! we are moving in to a new year and what you need is hope and determination. Do not give up before you even start. I will not kid you, there will be tough times. However, just know that this disease strikes when we least expect it, hides, fights back...but it can and has been BEATEN! Do not get down on yourself or feel defeated....you have only begun to fight! You are in all of our prayers! Let us know how we can help!

In the words of the great Winston Churchill...Despite the odds, we will never, Never, NEVER surrender!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
Still Here!

Claudine
Posts: 410
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: NEW-Need some positivity here.

Postby Claudine » Tue Dec 31, 2019 1:00 pm

I'm so sorry about your recent diagnosis. Based on my experience, the first few weeks are the worst - the dreaded C word, the big unknown, the frantic online reading (not a good idea, except for this forum, really, although I still find myself googling things a lot). Then slowly things fall into place - a better knowledge of what's what, a treatment plan with clear objectives. Things are way better in terms of treatment than they were even 10 years ago. Stay hopeful! As you can see on this forum, many have beaten this beast; others are still fighting, and will keep fighting for a long time. Cancer has gone from being a death sentence to being more and more often a chronic disease, that people live with/manage while still having a good quality of life. Hang in there XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: NEW-Need some positivity here.

Postby Malidosa » Tue Dec 31, 2019 1:22 pm

Thanks to both of you for replying.

I’m just finding I’m trying to find a way to adjust and live my life as normal as possible. I don’t want to waste anymore time being sad but also have this crippling scare that rushes over me.

This of course happens over the holidays so everything is more emotional and moving slower. I want to get into a surgeon ASAP but of course the one I was recommended is closed today and tomorrow!

I work for a major casino and it blows my mind casinos are open 24 hours a day but medical facilities seem to move at their own pace. This is my life. I need to know more about what’s going on inside of me!

Just going through what I think maybe the anger phase.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Jan 05, 2020 1:20 pm

AmyG wrote:I get so much hope with threads like these. It could seriously be me that's NED with no reoccurrence. It has to be someone, right? :lol:


Yes it can be. And I feel like some handle this like a chronic illness. We have to be hopeful and sometimes put cancer in a box on a shelf. Keep doing all we can do- control our diet and hope that some scientist somewhere makes a breakthrough.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Jan 05, 2020 1:28 pm

We are absolutely here for you!!!! I have learned a lot as you can see from this thread - I still go through all the emotions.
You must know this- stats are old. And include the old, those who refuse treatment ana those who die of something else. So those numbers will not help you. Join support groups with a wealth of information. Blue Hope Nation, Colontown - all on Facebook. They really helped me. You are in limbo right now but you must be your own advocate. You won’t know much until they remove whatever needs removing. Then you will get a pathology report with answers and info. You will feel much better with a plan. Please keep in touch and let us know what state you are in. Add a signature to your posts too. We wish you well. You can do this!!!
Lydia




Malidosa wrote:Thanks to both of you for replying.

I’m just finding I’m trying to find a way to adjust and live my life as normal as possible. I don’t want to waste anymore time being sad but also have this crippling scare that rushes over me.

This of course happens over the holidays so everything is more emotional and moving slower. I want to get into a surgeon ASAP but of course the one I was recommended is closed today and tomorrow!

I work for a major casino and it blows my mind casinos are open 24 hours a day but medical facilities seem to move at their own pace. This is my life. I need to know more about what’s going on inside of me!

Just going through what I think maybe the anger phase.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

hksvcap1
Posts: 13
Joined: Sat Jan 04, 2020 8:26 pm

Re: NEW-Need some positivity here.

Postby hksvcap1 » Fri Jan 10, 2020 7:49 am

I’m so sorry you’re going through this. I was diagnosed on 12/31/19. I’m meeting with a second surgeon this morning as my case has a couple wrinkles in it that will probably require more invasive treatment during surgery. I’m extremely nervous this morning and telling myself to calm down and breathe. I have 17 year old twins who are being extremely strong and that helps. I’m worried about leaving my kids too.

It’s so hard to do in the beginning while you sit and wait... take some breaths, possibly try to meditate (I never tried before but I’m going to start). Many hugs and know you’re not alone. Come to this board anytime for support!!!!

DonutHead
Posts: 64
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Fri Jan 10, 2020 8:37 am

We have all been there. It is healthy to have all of the emotions, just be sure to work through them. What i learned in the early stages of my diagnosis is to inform yourself and to always have a plan. one step at a time and deal with only what is in front of you. fear is normal, i still fear what could come tomorrow. my world of invincibility was shattered when diagnosed and i will never be the same.

the thing is, you got this. you need to be confident in YOU. Having a strong support network is key, but YOU will be doing the heavy lifting. We are lucky to be in an era where there is so much working on our side with the doctors, the care, treatment, and medical advances. Just never ever quit!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
Still Here!

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Apr 08, 2020 9:11 pm

Hi all-
I figured since we are on a Coronacation I’d check in. I actually forgot to post in Feb when I got my clear scan! So happy for it but I’m learning that PTSD is very real and I can’t just let it go and put it in the past. Stage 4 won’t let me. Still feel action in my liver but nothing on the scans. It did mention a non-changing nodule on my lung but no one refers to it as anything. Anyone go to a therapist? Is it helpful or am I wasting my money and inevitably making myself feel worse? Hoping you are all well and keeping busy. Hoping you are also social distancing.

Lydia
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

User avatar
Atoq
Posts: 384
Joined: Wed Oct 25, 2017 9:31 am

Re: NEW-Need some positivity here.

Postby Atoq » Fri Apr 10, 2020 3:53 am

Hi Lydia,
So nice to hear that your scan showed still NED!
I agree a stage IV mark will always follow us, but I think we are all fragile. It comes with our human condition, we drive cars, we can get a virus, our beloved ones can also get sick and leave us. So I try not to waste time and do everything I can to enjoy life. For me it means being with my children, taking long walks with my dog, running, playing the piano, working and starting new projects all the time (in the middle of an origami crush right now). So therapy is for sure a positive thing if you want to find out things about yourself, but my advice is to think about cancer as something that happened and can come back just as any other accident in life.

A big hug

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Nayemore and 4 guests