New Member here on the forum

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Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Sun Feb 18, 2018 10:10 pm

Good luck with your surgery. The nurses and staff on 3E are great. Custard was my comfort food.
Don't hurry home, getting in and out of bed is a milestone.
Do at 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
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

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Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: New Member here on the forum

Postby Atoq » Mon Feb 19, 2018 8:12 am

Good luck with the surgery and I wish you a smooth recovery!


Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
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 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: New Member here on the forum

Postby Eleda » Mon Feb 19, 2018 6:05 pm

Good luck tomorrow retiredteacher
Another hurdle jumped in the journey
Adele x
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Sun Feb 25, 2018 7:50 pm

Thank you Mike and Stoma and Claudia and Susan for the followup! You are amazing. Mike you may not remember posting an article detailing surgeon experience/outcome relationships - this was an eye opener for me and helped to seed the direction to go to Stanford (out of network.) As it turned out, the tumor after neo-adjuvant CRT was reduced to 3 cm located 12 cm from anal verge (Stanford MRI on Feb. 8.) In the OR, the surgeon determined that no ileostomy was required. I did feel prepared for an ileostomy <thanks to you sharing your a) challenges and b) expertise> if needed - imagine my shock when I woke up without hardware on my tummy. I thought maybe something had gone horribly wrong and the surgery was aborted, or that I was hallucinating from the drugs. No ileostomy. The surgeons were great - doc pulled in an OBGYN and they took out a remaining ovary and fallopian tube. The nurses on E3 were amazing - Pinky, Myra, Michol, Eric, Miss Nancy, Mike the Nurse Manager - could not be more impressed or happier. The baked custard!!! Like creme brûlée without the brûlée! I was trying to walk 10,000 steps daily leading up to surgery, am hitting just 5000 daily now. Path report came through yesterday, looks like 0/21 lymph nodes and just .3 cm “hot spot” left after treatment. Tired and sore but feeling really great overall and very happy. Thank-you, thank-you, thank-you!
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Sun Feb 25, 2018 7:53 pm

And Adele! Thank-you for the followup!
Terri
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Sun Feb 25, 2018 9:59 pm

I am so happy for you, that's wonderful. Glad to hear your 3E experience was similar to mine. You must be home and grateful to not have to deal with anything else for a little while. Will you still have to do mop up chemo?

Susan
Do at 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
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Wed Feb 28, 2018 12:05 am

Yes, I am guessing probably chemo. Lymphs were 0/21 but there was a still a hot spot about 1/6 inch squarish. Plus, initial staging may still be only estimated. Will see the surgeon again March 9 and back to my local oncologist the week of March 13 to see what he has to say. Still feeling pretty good, but pushed too hard Sunday and yesterday and created unnecessary pain. You athletes (MIKE!) I do not know how you do it - hat is off to you!

Terri
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: New Member here on the forum

Postby O Stoma Mia » Fri Mar 09, 2018 10:50 pm

retiredteacher wrote:...Will see the surgeon again March 9 and back to my local oncologist the week of March 13,..i

Any news from your meeting with the surgeon on Friday?

Do you have your questions ready for your upcoming meeting with the oncologist?

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Mon Mar 12, 2018 1:40 pm

Thank you for the followup Stoma - nothing new. She peeled off the last of the steri strips; incisions look great. I took her some jam from our hometown. The pathology showed T1 on a tiny hotspot left, 0/21 lymph nodes; >2cm clear margins; about 18 - 24 cm removed sigmoid/rectum; G1 well differentiated; small amt residual invasive carcinoma 0.3 cm; residual cancer with evident tumor regression, but more than single cells or rare groups - partial response score 2. Stanford MRI (2-8) states "markedly T2" - invasive to muscle ; Original biopsy from colonoscopy states G2 with comments about it being a fragmented and difficult sample;PET from Jan 22 states "near complete response", radiologists notes from November state "T3 N0 M0 by exam and PET-CT" So I am going to grid this out and present it to the oncologist so that he can explain his staging. Thank you for the nudge - I will get on this today and also make a list of questions. You are awesome.
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Mon Mar 12, 2018 3:53 pm

Great news!

Susan
Do at 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
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: New Member here on the forum

Postby O Stoma Mia » Tue Mar 13, 2018 1:34 am

retiredteacher wrote:... I have learned so much; I want to start an informational local CRC support group...

I think you are in a good position to start an informational local CRC support group. As a retired teacher, you obviously have some experience with lesson planning and organizing information. You could use this experience to improve the patient information environment in hospitals like your local hospital.

You could start by reading a manual designed for training Patient Navigators. You might be able to offer suggestions to improve the current system at your local hospital.

Here is a 106-page CRC patient navigator training manual that you could review in your spare time:

2018 CCSP Patient Navigation Program Manual
http://www.ucdenver.edu/academics/colleges/medicalschool/centers/cancercenter/CommunityAndEducation/colorectal/patientnavigation/program-manual-pn-guidebook-and-forms/Documents/2018%20CCSP%20Patient%20Navigation%20Program%20Manual.pdf
This Patient Navigation Guidebook explains the roles and
limitations of a Colorado Colorectal Screening Program
patient navigator, and provides specific information about
the program, colorectal cancer screening, diagnosis,
treatment and recovery
.


Here are the accompanying training slides:

CCSP PN 101 Training Sides
http://www.ucdenver.edu/academics/colleges/medicalschool/centers/cancercenter/CommunityAndEducation/colorectal/patientnavigation/program-manual-pn-guidebook-and-forms/Documents/CCSP%20PN%20101%20TRAINING.pdf


.

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Thu Mar 15, 2018 1:41 pm

Met with oncologist yesterday - he wants to do mop up chemo four months CAPEOX starting as soon as next week or when the nurses can slip me into the schedule. He wants to try without a port as my veins still look good and the few number of infusions required. Glad to get this party started - the sooner we start, the sooner it will be completed. Woo-hoo!!
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Thu Mar 15, 2018 1:51 pm

Better safe . I start Capox on Thursday. Opted for port as I wanted to keep those beins looking good.
Last step hopefully.
Susan
Do at 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
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New Member here on the forum

Postby susie0915 » Thu Mar 15, 2018 3:17 pm

I did capox with no port. Did six rounds and really had no problems. If it was more often than every 3 weeks I may have opted for the port. Good Luck.
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Mon Mar 19, 2018 1:41 pm

Infusions starting Thursday - so glad to have reached this "Part Three."
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019


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