Well, hell.

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Location: Florida

Re: Well, hell.

Postby Robino1 » Tue Jan 30, 2018 12:10 pm

You are not terrible.

We all deal with things in our own way. We grieve the loss of our innocence in regards to cancer. Nothing will ever be the same and there is defining line of before cancer and after cancer diagnosis.

Can you just tell hubby that you just want to cry without words and that all you need are his arms to hold you secure in your grief? We know they can't fix this for us, we just sometimes need to held.

I wish I were there to just hold you and let you get it out. {{{{hugs}}}}
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Posts: 563
Joined: Sat Dec 23, 2017 6:01 pm

Re: Well, hell.

Postby Caat55 » Tue Jan 30, 2018 12:27 pm

I get this totally. It is fatigueing holding it together, frustrating and yes it makes you sick. I can't believe how good ranting feels so rant away, we can take it.
We got you

55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Posts: 328
Joined: Sat Nov 04, 2017 11:08 am

Re: Well, hell.

Postby heiders33 » Tue Jan 30, 2018 1:18 pm

I’ve definitely held back telling my family how I really feel. I also remind myself that they probably have their own feelings that they aren’t revealing. We’re mostly just trying to get through treatment but I don’t know how I’ll be when I’m done.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU

Posts: 39
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Tue Jan 30, 2018 3:52 pm

Thanks y'all. It feels better, knowing I'm not alone.
I think I've also been internalizing the loss of my inner-girly-parts coz they were problematic. In one surgery, I had a take down, reattatchment, removing some suspicious bits, doing the illeostomy, fixing a hernia, fixing some BAD adhesions, and a hysterectomy. DAMN that's a lot! My surgeons were busy with me! Main one said I couldn't just be easy on anything, lol!

Anyway. There's a messed up rollercoaster of everything in my head right now. Gonna be a >fun< visit to the oncologist on Friday...

*after which I'll start fixing my sig to include all what's going on with me. :oops:
F, 44y/o
Colon cancer, ascending colon
Stage 4
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.

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Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Well, hell.

Postby Shana » Wed Jan 31, 2018 11:10 pm

Hope your visit to oncologist helps settle things down for you some. I can only imagine what your body and hormones must be feeling with all those surgeries!

Take care, hope to get updates once you have a clear plan moving forward.

We're all here for you! ❤️

All the best,

DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Posts: 154
Joined: Sun Oct 08, 2017 3:25 am

Re: Well, hell.

Postby henry123 » Thu Feb 01, 2018 12:22 am

I so totally agree.
I am almost fine now physically but have a hard time mentally getting back to my work routine.
After two years of roller coaster medical ride, I am still to be my original hardworking self.
It is difficult explaining situation to myself let alone others including kids and family.
What do I want in future?Ambition for Success or just satisfaction at being alive .
Should I feel guilty if I am once more hungry for professional battles or is that being ungrateful ?
46yo M
5/16 lap AR 14/21 L nodes +ve
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

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O Stoma Mia
Posts: 1464
Joined: Sat Jun 22, 2013 6:29 am

Signature template

Postby O Stoma Mia » Thu Feb 01, 2018 1:02 am

JennPixie wrote:... after which I'll start fixing my sig to include all what's going on with me.

Good luck on your meeting with the doctor tomorrow, and thanks in advance for eventually updating your signature. This will help folks here understand where you have been on your journey and where you might be heading in the future.

Remember, there's a limit of 512 characters (including spaces) for a signature, so you might have to use some abbreviations if you want to tell the whole story.

To create or update a signature, click on the link below. You can have up to 512 characters (including spaces)in your signature..


Some items that you could include in your signature are given below:

Age & Sex
DX: Rectalcancer (RC) or Colon Cancer (CC)
Location: If RC, then upper, middle or lower rectum ,and distance from anal verge. If CC, then ascending colon, hepatic flexure, transverse colon, splenic flexure,descending colon, sigmoid colon, recto-sigmoid junction, etc.
Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
Tumor size (in mm or cm)
Tumor grade:
    G1: Well differentiated (low grade)
    G2: Moderately differentiated (intermediate grade)
    G3: Poorly differentiated (high grade)
    G4: Undifferentiated (high grade)
TNM code: e,g, T3N0M0, etc
Stage : Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
Positive lymph nodes: eg., X positive out of Y sampled.
Mets: Location of metastases, if any (e.g., mets to liver, mets to lungs, etc)
Baseline CEA value (if known)
Lymphovascular invasion (if known): present vs. absent
Perineural invasion (if known): present vs. absent
Surgical margins: clear or involved
MSI status (if known)
Lynch status (if known)
KRAS/BRAF status (if known)
Primary surgery type:
    LAR, ULAR, TME, APR, Laparascopic vs. open resection, polypectomy, proctosigmoidectory, colectomy, hemi-colectomy, sigmoid-colectomy, etc...
Ostomy surgery: Ileostomy, or colostomy, or no ileo surgery
Radiation therapy (if any): Chemo/rad
Chemotherapy (if any): e.g., XELOX, CAPEOX, FOLFOX, etc.

Posts: 39
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Thu Feb 01, 2018 2:06 am

Wow! That's a lot of info... I'm taking my tablet with me so I don't forget something!

Thanks all for the understanding, support, and your own moments of concern, etc...

Now I'm trying to work out the dreams where I feel like I'm suffocating. Past few nights when I dream, it starts off normal, then a turn in the action ends up with me getting smothered and I feel myself unable to take a breath... :shock:
I wake up scared to go back to sleep, coz I don't want to feel myself suffocating again.

Not trying to decipher the imagery, that's all too obvious. Just trying to figure out how to not go there when I sleep :?
F, 44y/o
Colon cancer, ascending colon
Stage 4
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.

Posts: 5762
Joined: Sun Apr 16, 2006 4:09 pm

Re: Well, hell.

Postby Lee » Fri Feb 02, 2018 5:52 pm

Good luck with your visit, hope it was informative.

Thinking of you,

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!

Posts: 39
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Wed Feb 07, 2018 4:43 pm

Getting the port done tomorrow. Getting my first treatment on Valentine's Day.
"Happy Valentine's Day! Have a chemo treatment!" :roll:

Well, at least I can enjoy some of my hubby's birthday cake before then, lol.

For those getting FOLFOX, how's the side effects been? My dr. Says I shouldn't have too much issue w/nausea, and gave me a prescription for if I do start feeling sick. "Don't wait, thinking it will pass. If you catch it right away, you can knock it out before it gets too bad. But really, you shouldn't have too much trouble..."

What's been y'alls experience.?.
F, 44y/o
Colon cancer, ascending colon
Stage 4
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.

Posts: 248
Joined: Sat May 21, 2016 10:16 am

Re: Well, hell.

Postby AussieAssCancer » Wed Feb 07, 2018 8:14 pm

A happy Valentine’s Day indeed :cry:

On a positive though - it’s good to be starting on the juice to punish that node!

I was lucky and tolerated FOLFOX pretty well. Definitely drink a heap of water before and during, and my advice is start and finish each day with a Maxalon to keep the nausea. That way it never starts in the first place. They can give you a script for something stronger if that doesn’t work butt I reckon you’ll be sweet.

Main side effect for me was fatigue, which kicked in 2 days after disconnect. Rest up and you’ll bounce back just in time for the next round LOL

All the best,

Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversed
Aug '17: Clear CT (NED)
Feb ‘18: Clear CT (NED)

Blog: kickingrectalcancerintheassblog

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