Feeling confused . What symptoms to watch for

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Hopegirl
Posts: 42
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Feeling confused . What symptoms to watch for

Postby Hopegirl » Wed Aug 22, 2018 1:21 am

Haven’t post for awhile. But here goes. Not sure what or how to feel because every weird symptoms I get it makes me wonder
If its back . Even though all my test came out good. My next scan is not til November. Sigh but I know my colonoscopy is coming up in October. That’s my 1 year diagnosis. Every little pain I get with my stomach sends me to high anxiety. I’m tryin so hard to take it one day at a time but sometimes it still hits me pretty hard feeling in disbelief that I have this disease . Sorry for sounding so down . I feel so alone sometimes . What symptoms am I suppose to watch out for . Just really curious. Thank you
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

Koreysue
Posts: 24
Joined: Mon Apr 30, 2018 2:36 pm

Re: Feeling confused . What symptoms to watch for

Postby Koreysue » Wed Aug 22, 2018 2:02 am

I’m sorry you are down. I just had my one year tests. All looks well except for CEA rise. I have been having all sorts of weird abdominal pains and back pain, and was just sure something was going to show up on the scan. But then nothing did. So you see, sometimes I think we (people with this diagnosis) become tuned into every twinge, and it could just be harmless pains that everyone gets. I know it is so hard. Somedays I’m not sure how I’m going to live like this- test to test. Some say it gets easier as time goes on. I hope so. The good thing is, with close monitoring they can catch things early. That’s what I have to keep telling myself.
Take care,
Koreysue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)

crikklekay
Posts: 65
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Feeling confused . What symptoms to watch for

Postby crikklekay » Wed Aug 22, 2018 8:47 am

I understand how you feel, we're not out of the wood yet with my DH's end of chemo CT scan today and one more treatment to go, and even now I wonder if any little thing could mean something is wrong. I told my Mom that every pain, sneeze, and symptom going forward is going to freak me out and she told me not to worry and that "anxiety is a sin" so I completely understand the lonely feeling part. It's hard when no one else in your circle can comprehend how you feel or know what it's like to live through this, and I'm just the caregiver. I've wanted to join a support group, but all the ones locally for caregivers are in the middle of the day while I'm at work. Maybe finding a support group might help you too?

I can't give you any advice on what symptoms to watch as we aren't at that stage yet, but if you are having pain or not feeling well talk to your doctor. After buying new shoes my husband suddenly had a red, swollen knobby part of his foot that gave him a lot of pain. I was convinced it was bone mets though I read it was unlikely, so John went to his GP doctor. She examined his foot, took an X-ray, and turns out it was just a run of the mill bunion. It just never bothered him before because he wears his shoes for years and they were so broken in. I felt a little silly but knowing what was causing the problem helped.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

Lee
Posts: 5722
Joined: Sun Apr 16, 2006 4:09 pm

Re: Feeling confused . What symptoms to watch for

Postby Lee » Wed Aug 22, 2018 10:25 am

Hopegirl wrote: . . . What symptoms am I suppose to watch out for . Just really curious. Thank you


I was told by my Onc, any ache or pain lasting longer than 2 weeks should be followed up with an office visit.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Hopegirl
Posts: 42
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Thu Aug 23, 2018 1:54 am

Thank you everyone for taking your time to write back. Sorry to reply so late sometimes. Late at night is my only quiet time when my young 2 boys are asleep. Sigh I wish I knew where I can find a good group therapy at. Feeling lonely n lost sometimes sucks and no one understands.
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

hiker
Posts: 73
Joined: Thu Aug 09, 2018 10:15 am

Re: Feeling confused . What symptoms to watch for

Postby hiker » Thu Aug 23, 2018 8:41 am

Hey Hopegirl,

This disease will definitely make a person feel down and lonely sometimes. And you are absolutely correct to say no one understands. When I was going through the worst of my journey so far, folks at church and coworkers would always say: "Oh but you're young and strong so you'll beat this." I just want to scream: "Do you not understand that I have stage iv cancer? They don't make a stage v. This has nothing to do with me being young and strong. It has to do with whether the chemo/surgeries work to kill this awful disease." Then once I was done with active treatment and my scans showed no new cancer everyone was congratulating me on beating it. I just say "thanks" when I really want to say "you have no clue whether I've beat this or not - it could come back at any moment stronger than ever."

I know they mean well so I don't let it bother me. And like you say, they just don't understand. How could they. They've not been dealt this hand. You have young children just as I do which gives us both a reason to stay positive and keep fighting.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

AppleTree
Posts: 240
Joined: Fri Mar 18, 2016 8:16 am

Re: Feeling confused . What symptoms to watch for

Postby AppleTree » Thu Aug 23, 2018 1:53 pm

I have found great stress relief in weeding, of all things, this summer. I also knit, crochet, and do some beading. When I am really tired I color in those fancy coloring books or watch tv. I also like to follow certain people on YouTube who have interesting channels. I guess for me, it is keeping my mind busy. My activity changes depending on how I feel. I will be happy when my son goes back to school because sometimes I feel like he needs constant entertainment. For the past few days I have had incredibly painful fecal incontinence. I got my anti-diareah shot at the hospital today, so hopefully that will help. Plus I got my port flushed. My June CT scan showed 2 spots in the lungs. My July PET was clear. Now I am scheduled for an October PET. I find the more I stress about it, the worse I feel. I understand your anxiety. If you feel it is really affecting you daily, maybe you should talk with your DR about it. You can always find an understanding group here. Many people just do not understand what we go through on a daily basis, and I guess that is ok. If they really understood then that would mean they have cancer too.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Feeling confused . What symptoms to watch for

Postby O Stoma Mia » Thu Aug 23, 2018 3:13 pm

Hopegirl wrote:... I wish I knew where I can find a good group therapy at. Feeling lonely n lost sometimes sucks and no one understands.

You might be able to find a good therapy group near you if you were to contact the caregiver or one of the family members of the ColonClub member who passed away three years ago this week in your town. The caregiver might be able to give you some tips on places in town where cancer patients typically meet for mutual support. I'm sure there must be some people close by who fully understand your situation and who would be quite willing to provide you with some support. I think you just need to ask.

There is a very old saying that goes something like this:

"Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you."

You need to be pro-active. You need to be your own advocate.

boxhill
Posts: 122
Joined: Fri Apr 06, 2018 11:40 am

Re: Feeling confused . What symptoms to watch for

Postby boxhill » Fri Aug 24, 2018 8:08 am

I suggest that you try joining Colontown on facebook. Lots of outgoing people and support there, and they also have local groups that meet IRL. It is a private, hidden group, so no one outside of it will see anything you post, or even that you posted. Within colontown there are "neighborhoods" dealing with various issues, and you can join them, too.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

How to join Colontown

Postby O Stoma Mia » Fri Aug 24, 2018 8:24 am

boxhill wrote:I suggest that you try joining Colontown on facebook. Lots of outgoing people and support there, and they also have local groups that meet IRL. It is a private, hidden group, so no one outside of it will see anything you post, or even that you posted. Within colontown there are "neighborhoods" dealing with various issues, and you can join them, too.

How to join Colontown
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53309&p=421686#p421686

Image

Hopegirl
Posts: 42
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Sat Aug 25, 2018 2:34 am

Thank you so much everyone for responding n understanding. Means a lot . Sigh just wish that they find the cure for this awful disease already
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

Hopegirl
Posts: 42
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Thu Aug 30, 2018 2:24 am

Having anxiety disorder on top of this sucks going thru this :(
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Generalized anxiety disorder

Postby O Stoma Mia » Thu Aug 30, 2018 4:03 am

Hopegirl wrote:Having anxiety disorder on top of this sucks going thru this :(

If you have insurance, you might be able to get treatment for this and be covered under ICD-10 diagnosis F41.1
Generalized anxiety disorder
"F41.1 is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purposes."

See details in reference link--
Reference: https://www.icd10data.com/ICD10CM/Codes/F01-F99/F40-F48/F41-/F41.1


By the way, did you see the the links that I posted on your other thread back in April this year?

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59711&p=474430&hilit=anxiety+stress#p474430

Did you try any of the suggested solutions for anxiety or stress?

Hopegirl
Posts: 42
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Sat Sep 01, 2018 12:52 am

Thank you Stoma Mia. I will look into it
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always

Hopegirl
Posts: 42
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Sat Sep 01, 2018 10:20 pm

I’m sorry but I have another question. How can I tell if I have reoccurrences or not? Just really curious because I don’t get my next scan or see my oncologist til November . It just seems so far away .
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
Pray for NED Always

Pray for NED always


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