NEW-Need some positivity here.

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teacher2017
Posts: 234
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Apr 17, 2019 8:50 pm

So on Saturday it will be a year since I did my last chemo. I feel like I should do something like scream off a mountain or mourn my former self. I have not come to terms with death- I don’t care what the disgusting stats are (14% survival rate for 5 yrs). I refuse to think this is my end. I’m six months NED and on June 1st is my nine month scan. Since this dx, I pray every night, I got a tattoo, I rekindled my relationship with my cousins, I bought an LV bag, bought red shoes- all things that are very unlike me. So as I wait my fate- I will take my daughter to her drivers test, and then to see the Phantom on Saturday. I think about it less but it’s always there.what are you doing to keep your mind off this???? I would love the hear....:)
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18
Cea level- 1.1 3/2/19
Clear scan- 3/1/19
Cea level- 1.2 6/2/19
Clear scan- 6/2/19
Still here!!!!!

AmyG
Posts: 151
Joined: Tue Dec 25, 2018 8:08 pm

Re: NEW-Need some positivity here.

Postby AmyG » Wed Apr 17, 2019 9:14 pm

I think the two most important questions are as follows:

Do the red shoes match the bag?
What did you get for your tattoo?

I start my first chemo treatment next Tuesday. I look forward to a year from now, hoping I'm NED too!
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin

stu
Posts: 1103
Joined: Sat Aug 17, 2013 5:46 pm

Re: NEW-Need some positivity here.

Postby stu » Thu Apr 18, 2019 3:57 am

Amy I love your attitude. It has to be one of the healthiest attitudes I think I have ever encountered . My mum is a bit like that . She faces the hard stuff but always with an eye on the positive . Got to confess that’s not my natural position .

Teacher my mum went kayaking after her chemo finished . On open seas at 69 for the first time . Then we set about celebrating everything and everyone . Granted I do most of the preparation but projects and new experiences are high on the list . Each one separates the past that bit more . You are doing amazing things in my opinion. Being open to so much . Looking forward to hearing your plans for the next six months , then the next . What new things will unfold for you .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

AmyG
Posts: 151
Joined: Tue Dec 25, 2018 8:08 pm

Re: NEW-Need some positivity here.

Postby AmyG » Thu Apr 18, 2019 9:44 am

Stu, you're about the nicest person I've run in to online. :D

I've made an executive decision that after all of this is over (chemo, resection, mop up) and I'm declared cancer free... we're going to Florida to visit my father in law and his wife in their new home. We're going to make it an epic road trip, as we'll have 4 younger kids with us that haven't seen that part of the country.

I wasn't even worried about my CT that I had on Tuesday. If there are more tumors, it's not like stressing about them will make them go away. Side note on CT: no one told me the contrast was going to make me feel like I wet my pants!!! :shock:
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin

teacher2017
Posts: 234
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Apr 18, 2019 7:11 pm

AmyG wrote:Stu, you're about the nicest person I've run in to online. :D

I've made an executive decision that after all of this is over (chemo, resection, mop up) and I'm declared cancer free... we're going to Florida to visit my father in law and his wife in their new home. We're going to make it an epic road trip, as we'll have 4 younger kids with us that haven't seen that part of the country.

I wasn't even worried about my CT that I had on Tuesday. If there are more tumors, it's not like stressing about them will make them go away. Side note on CT: no one told me the contrast was going to make me feel like I wet my pants!!! :shock:


Amy- I have a story to tell you. So I had my scan on March 2nd and after the contrast went in, I felt like I normally do, like you want to wet your pants. The nurse comes in to disconnect me and notices that my neck is all red. Well for the record, it’s always red. It’s red when I’m nervous, red when I wake up, red when I’m angry, red when I’m excited about something, whatever. She insisted it was an allergic reaction. So they made me wait. I usually run out there like a bat out of hell. After a 1/2 an hour of waiting for the radiologist to come out, we concluded that it’s just me! I can’t wait for next time! I made them put it on my chart!!!

And as for the bag matching the shoes, they don’t. But I’m not opposed to buying some that do! And the tattoo is in my inside wrist. It says “FORZA” which means strength or push forward. I think I’m going to actually plan to go to Hawaii or Italy in August- if that June scan is okay...

Ps Your attitude will be worth its weight in gold! It will get you through all the garbage cancer tries to take from you. Kids are the reason to do everything the dr says! Hugs to you!
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18
Cea level- 1.1 3/2/19
Clear scan- 3/1/19
Cea level- 1.2 6/2/19
Clear scan- 6/2/19
Still here!!!!!

teacher2017
Posts: 234
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri May 24, 2019 8:26 pm

Ok so June 1st is scan day- it’s the nine month scan and I really hope it’s clear. I’m going through the panic again but I’ve made
Plans this weekend to host two bbq’s- I figure if I’m well enough to cook, I’m a ok. Still scared that these pains in my right side are something. I went to the gi dr to make another appt for the colonoscopy and he really didn’t want to do it until I told him I had a reoccurrence in my liver last sept. Then his face fell. It was the worst feelings ever. So I’m scheduled for July 8th. I’m starting to feel like why am I bothering with all these tests and drs appt?? If I’m as good as gone, what am I wasting this time for? Can the scan see it all? If I’m NED, I plan another trip to broadway and I’m going to book a trip to Maui with my family in August. If it’s surgery and/or chemo, I think that I don’t know what will be. So tomorrow I’m going to Stew Leonard’s to buy food for these parties. I wish I could invite you all for drinks...

Take care, friends...I’ll keep you posted.
Happy Memorial Day- and to all those who serve/d, thank you for your sacrifice and service.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18
Cea level- 1.1 3/2/19
Clear scan- 3/1/19
Cea level- 1.2 6/2/19
Clear scan- 6/2/19
Still here!!!!!

AmyG
Posts: 151
Joined: Tue Dec 25, 2018 8:08 pm

Re: NEW-Need some positivity here.

Postby AmyG » Fri May 24, 2019 10:56 pm

I can't wait for you to update this with an all clear. :D

Enjoy your parties, go to Maui, get more tattoos. I'll look forward to reading about your adventures!
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin

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LPL
Posts: 635
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: NEW-Need some positivity here.

Postby LPL » Sat May 25, 2019 11:36 am

AmyG wrote:I can't wait for you to update this with an all clear. :D

Enjoy your parties, go to Maui, get more tattoos. I'll look forward to reading about your adventures!

teacher2017, I totally agree with AmyG !
Sending Best of Luck vibrations to you for clear check ups June 1st and July 8th. I think that when you have been diagnosed with cancer - every odd symptoms, like your pains in the right side, will make your brain think.. ”bad”. It does not have to be! Did you have any symptoms at the time they found your met in the liver?
All the best to you. /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

Pyro
Posts: 239
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: NEW-Need some positivity here.

Postby Pyro » Sat May 25, 2019 12:28 pm

hopie wrote:AMAZING! I'm really happy for you!! Let the count down for "de-portation" begin! :)


Stealing that.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda, CEA @36, treatment failure

teacher2017
Posts: 234
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Jun 02, 2019 5:16 am

So I had the scan yesterday and of course, I checked my blood work and Cea level on the portal. Longest day ever to say the least! Cea level went from 1.1 to 1.2. My blood work looked all normal except for the ALT (liver enzyme number). It went from 25 to 30. Not sure why or if it means my liver is up to something. Any insight? Scan results Tuesday. Prayers accepted.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18
Cea level- 1.1 3/2/19
Clear scan- 3/1/19
Cea level- 1.2 6/2/19
Clear scan- 6/2/19
Still here!!!!!

margiej
Posts: 82
Joined: Sat Apr 14, 2018 8:46 am

Re: NEW-Need some positivity here.

Postby margiej » Sun Jun 02, 2019 11:56 am

I wouldn't be concerned. Your ALT is well within the normal range. Sending all the good vibes, positive energy, and prayers for your good scan results on Tuesday.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/17
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

teacher2017
Posts: 234
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Jun 05, 2019 11:12 am

All clear!!!! All clear!!! BOOYAH!!! Woop Woop! So happy! I’m so sick of worrying! Now for a colonoscopy...going to try and live my life. I will always keep you posted. And I wish you all NED!!!!
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18
Cea level- 1.1 3/2/19
Clear scan- 3/1/19
Cea level- 1.2 6/2/19
Clear scan- 6/2/19
Still here!!!!!

User avatar
LPL
Posts: 635
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: NEW-Need some positivity here.

Postby LPL » Wed Jun 05, 2019 12:33 pm

teacher2017 wrote:All clear!!!! All clear!!! BOOYAH!!! Woop Woop! So happy! I’m so sick of worrying! Now for a colonoscopy...going to try and live my life. I will always keep you posted. And I wish you all NED!!!!

Big Congratulations!!!
Wonderful News :D
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

Beckster
Posts: 367
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Wed Jun 05, 2019 12:42 pm

YAY...YAY...YAY! :D :D :D
57/Female
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 to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18, 6/19 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
Clear Colonoscopy 10/17 :D

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susie0915
Posts: 923
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Wed Jun 05, 2019 5:41 pm

Great News!!!
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5


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