When I started chemotherapy...

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mobrouser
Posts: 173
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

When I started chemotherapy...

Postby mobrouser » Mon Sep 10, 2018 4:37 pm

..the Doc said "Full steam ahead"
I can call her Dr. L
And Dr. L when you call me
You can call me NED
Call me NED.... :lol:


Just had to share, with wishes from the bottom of my heart that everyone here receives the good news we all deserve.
This is such an amazing support group.

Cheers,
mob 8)
CC Dx 102017 age 58
Lap. right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

Cmac1275
Posts: 55
Joined: Mon Aug 06, 2018 4:21 pm

Re: When I started chemotherapy...

Postby Cmac1275 » Mon Sep 10, 2018 4:42 pm

This is always great to hear. Congrats on your milestone. Keep on doing your thing.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: When I started chemotherapy...

Postby peanut_8 » Mon Sep 10, 2018 6:24 pm

HOORAY!!!!!
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Maggie Nell
Posts: 1150
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: When I started chemotherapy...

Postby Maggie Nell » Mon Sep 10, 2018 10:20 pm

Image

A man walks down the street.....

Yippee Ki Yay, mo!

:D :D
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

stu
Posts: 1612
Joined: Sat Aug 17, 2013 5:46 pm

Re: When I started chemotherapy...

Postby stu » Tue Sep 11, 2018 1:42 am

Love it .
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 .

DarknessEmbraced
Posts: 3815
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: When I started chemotherapy...

Postby DarknessEmbraced » Tue Sep 11, 2018 7:32 am

Congratulations! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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

Re: When I started chemotherapy...

Postby susie0915 » Tue Sep 11, 2018 7:44 am

Awesome 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 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

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: When I started chemotherapy...

Postby bitchslapped » Sat Sep 15, 2018 10:49 am

Congratulations NED :wink: , wonderful news!
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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

Re: When I started chemotherapy...

Postby Caat55 » Sat Sep 15, 2018 4:16 pm

Great News!!!! congrats :D
S
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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CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: When I started chemotherapy...

Postby CRguy » Sat Sep 15, 2018 6:40 pm

mobrouser wrote:..the Doc said "Full steam ahead"
I can call her Dr. L
And Dr. L when you call me
You can call me NED
Call me NED.... :lol:


Paul Simon would be proud !!!! :mrgreen:
and WE are MEGA CHEERS happy for you

CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: When I started chemotherapy...

Postby AppleTree » Sun Sep 16, 2018 12:24 am

Folfox does seem like forever during treatment. But hearing NED makes up for it. Congratulations!
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 R 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/Oct PETs...CLEAR!

User avatar
mobrouser
Posts: 173
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

I'm cleaning house...

Postby mobrouser » Sun Sep 16, 2018 1:24 pm

Another step forward today. I am off to the pharmacy this afternoon to return my sharps bin and I won't be coming back home with an empty one!!!
I'm also returning a box of unused Lovenox shots, plus some unused anti-nausea meds. By my estimation I've self-injected 225 blood thinner shots (at $25 per shot) plus 35 Grastofil shots (Neupogen SEB at $150 per shot).
Another couple of weeks and my blood levels should be back to normal so I can crack open a bottle of wine to celebrate. Image

I have my 1 year colonoscopy scheduled for the first week of December. This will be done by my surgeon. I asked if I could watch, she seemed surprised that I didn't want to get knocked out. End result - we'll decide on the day of.

Cancer Care Ontario is in the middle of changing their follow up protocols and I could be in the old program or new, my oncologist wasn't sure which I would get although she has given me the test requisition paper work for new. The belief is that the risks from multiple scans over a year don't offset the delayed detection of recurrences. (Hope that makes sense-I'm trying to say that risk outweighs benefit.) The new standard is Ultra sound, Xray and blood test at 6 months; CT scan and blood test at 12 months for the first 3 years. I've forgotten what happens in year 4 and 5, but I have an appointment with the Nurse Practitioner in 3 weeks time to review the program so that I fully understand it.

Thank you all for the thoughts and support.

Cheers,
mob (aka NED) 8)
CC Dx 102017 age 58
Lap. right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: I'm cleaning house...

Postby NHMike » Sun Sep 16, 2018 6:38 pm

mobrouser wrote:Another step forward today. I am off to the pharmacy this afternoon to return my sharps bin and I won't be coming back home with an empty one!!!
I'm also returning a box of unused Lovenox shots, plus some unused anti-nausea meds. By my estimation I've self-injected 225 blood thinner shots (at $25 per shot) plus 35 Grastofil shots (Neupogen SEB at $150 per shot).
Another couple of weeks and my blood levels should be back to normal so I can crack open a bottle of wine to celebrate. Image

I have my 1 year colonoscopy scheduled for the first week of December. This will be done by my surgeon. I asked if I could watch, she seemed surprised that I didn't want to get knocked out. End result - we'll decide on the day of.

Cancer Care Ontario is in the middle of changing their follow up protocols and I could be in the old program or new, my oncologist wasn't sure which I would get although she has given me the test requisition paper work for new. The belief is that the risks from multiple scans over a year don't offset the delayed detection of recurrences. (Hope that makes sense-I'm trying to say that risk outweighs benefit.) The new standard is Ultra sound, Xray and blood test at 6 months; CT scan and blood test at 12 months for the first 3 years. I've forgotten what happens in year 4 and 5, but I have an appointment with the Nurse Practitioner in 3 weeks time to review the program so that I fully understand it.

Thank you all for the thoughts and support.

Cheers,
mob (aka NED) 8)


That sounds brutal (I only had to do 28 Lovenox). Glad that you're NED though - it's one rough journey.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: When I started chemotherapy...

Postby Koreysue » Thu Sep 20, 2018 10:18 pm

Woooo-hooooo! Great news :D
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

User avatar
mobrouser
Posts: 173
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Postby mobrouser » Fri Mar 22, 2019 9:11 pm

New Cancer Care Ontario maintenance protocol is, assuming there is no evidence to suggest that I'm not NED, an ultrasound and chest X-ray, plus CEA test at 6 months and then CT and CEA at 12 month for the next 3 years.
So on March 11th was my 6 month follow up after ending chemo.

The ultrasound was done by a 4th year student and then followed with the student's supervisor redoing the test so that they could match results.
I was asked before starting if I was OK with this, which I was. It was 45 minutes of "big breath in and hold". There were a few times when both of them pushed the "hold" to my limits, and I think my lung capacity is pretty good.
The X-ray was done by a well seasoned technician.

On the 19th I met with my GP to review my results. This appointment had been booked directly by my oncologist's office in September. My GP was not really sure why I was there until I told her that she was supposed to review the results with me. New to her. I suppose in some ways that is good news - it would seem that most of her patients are not relatively new cancer patients. However it doesn't reflect well on the conversation between Cancer Care and doctors.

Anyway end result, ultrasound and X-ray show no signs of lesions in liver or lungs, nothing abnormal in the abdomen and CEA has dropped to 2.5. I am still NED. :D
I asked why the only other blood test done was for creatinin and my GP agreed that there should have been at least liver function and haemoglobin tests done so more blood work has been scheduled.

I appreciate all the thoughts from posters here and wish good results to everyone. I'm especially thinking about some who haven't received the good news that I did.

8) mob
CC Dx 102017 age 58
Lap. right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?


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