New Member here on the forum

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Caat55
Posts: 484
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.
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

User avatar
Atoq
Posts: 281
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
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery

Eleda
Posts: 133
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: 86
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 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

retiredteacher
Posts: 86
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 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 484
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
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

retiredteacher
Posts: 86
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 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

User avatar
O Stoma Mia
Posts: 1364
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

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: 86
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 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 484
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
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

User avatar
O Stoma Mia
Posts: 1364
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

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: 86
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 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 484
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
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

User avatar
susie0915
Posts: 821
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 sigmoid/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

retiredteacher
Posts: 86
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 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.


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