what happens after chemo?

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Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Thu Jul 12, 2018 1:43 pm

NHMike wrote:
Caat55 wrote:Our local hospital is a different system but I have access to my records, can download and send them to Stanford but the visiting doctor's note are not detailed. I will try anyway and hope it is enough. In the mean time I will try to schedule the enema, things tend to book out months in advance out here. I have time, want all the chemo or most anyway out of my system. According to what I read, both oxal and xeloda can slow down healing.
S


I definitely believe that. My neuropathy remains after a month after finishing. I'd say that it hasn't been declining. The tingling is worst in the toes and there's some in the fingers.


Ditto, I have to wear slippers in house, shoes outside all the time. My mouth and throat are super sensitive too, feel like tin.

S
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

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Mon Aug 06, 2018 6:23 pm

Cea is .5. Going to get scan is 6 weeks. Pays to push a little.
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

NHMike
Posts: 1701
Joined: Fri Jul 21, 2017 3:43 am

Re: what happens after chemo?

Postby NHMike » Mon Aug 06, 2018 6:30 pm

Caat55 wrote:Cea is .5. Going to get scan is 6 weeks. Pays to push a little.
Susan


Sounds good.
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; 9/8: 1.8; 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
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

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Mon Sep 17, 2018 7:29 pm

CT CAP 9/11/2018 NED
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: 840
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: what happens after chemo?

Postby susie0915 » Tue Sep 18, 2018 7:40 am

Awesome news!
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

NHMike
Posts: 1701
Joined: Fri Jul 21, 2017 3:43 am

Re: what happens after chemo?

Postby NHMike » Tue Sep 18, 2018 7:06 pm

Caat55 wrote:CT CAP 9/11/2018 NED


Welcome to the club. Be sure to stay.
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; 9/8: 1.8; 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
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

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Tue Sep 18, 2018 9:46 pm

I think this Nedville place is the coolest, planning on hanging here and never moving again.
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

boxhill
Posts: 117
Joined: Fri Apr 06, 2018 11:40 am

Re: what happens after chemo?

Postby boxhill » Thu Sep 20, 2018 5:06 pm

Last week I asked my oncologist what we'll do when I finish the 12 cycles of FOLFOX.

Right now he's trying to get me through the last few cycles without any more delays. Neulasta has fixed my WBC /neutrophil problem nicely, but platelets continue to be a problem. They were 58 on the scheduled day for infusion #9, so I took an extra week. Up to 126 yesterday, so went ahead with #9. Assuming my normal drop per cycle, I should be able to get through #10 without another week off. He had already reduced my Oxy dose by 20%, this time he shaved 20% off the 5FU, and is hoping that it will help with platelet recovery.

At the moment I am in the unusual position of being Stage !V NED, so I am generally not eligible for trials. Not that I'm complaining, mind you!

So when I finish FOLFOX, hopefully at the end of October, I'll have more scans, likely including a PET scan, which I've never had, and quite possibly a liver MRI, which I've also not had. We really want to get these done in this calendar year, before the insurance deductible ticks over. If I continue to be officially NED, after that there will be periodic scans. We haven't discussed what will happen if something shows up. Since I am MSI-H, Keytruda is a possibility, but I have no idea whether it would be possible to go straight to that or whether something else would be indicated.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

retiredteacher
Posts: 88
Joined: Sat Oct 21, 2017 1:34 pm

Re: what happens after chemo?

Postby retiredteacher » Sun Sep 23, 2018 11:26 pm

Congrats Susan! I have been off awhile and just now catching up! My doc sent me away until the end of September so will press for a scan etc. at that time. Just got back from Alaskan cruise with no issues - even managed to hike around on the Juneau ice field with nary a bathroom for miles. Foot neuropathy still there, but is not keeping me awake at night - fingers crossed my luck holds! Glad you got a good report card!

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: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Mon Sep 24, 2018 6:30 pm

boxhill wrote:Last week I asked my oncologist what we'll do when I finish the 12 cycles of FOLFOX.

Right now he's trying to get me through the last few cycles without any more delays. Neulasta has fixed my WBC /neutrophil problem nicely, but platelets continue to be a problem. They were 58 on the scheduled day for infusion #9, so I took an extra week. Up to 126 yesterday, so went ahead with #9. Assuming my normal drop per cycle, I should be able to get through #10 without another week off. He had already reduced my Oxy dose by 20%, this time he shaved 20% off the 5FU, and is hoping that it will help with platelet recovery.

At the moment I am in the unusual position of being Stage !V NED, so I am generally not eligible for trials. Not that I'm complaining, mind you!

So when I finish FOLFOX, hopefully at the end of October, I'll have more scans, likely including a PET scan, which I've never had, and quite possibly a liver MRI, which I've also not had. We really want to get these done in this calendar year, before the insurance deductible ticks over. If I continue to be officially NED, after that there will be periodic scans. We haven't discussed what will happen if something shows up. Since I am MSI-H, Keytruda is a possibility, but I have no idea whether it would be possible to go straight to that or whether something else would be indicated.


It is a lot to take in isn't it? The PET scan is a longer test, shows activity in color. Hopeful my CT gave enough detail. Next step barium enema I believe in prep for reversal.
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

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Mon Sep 24, 2018 6:32 pm

retiredteacher wrote:Congrats Susan! I have been off awhile and just now catching up! My doc sent me away until the end of September so will press for a scan etc. at that time. Just got back from Alaskan cruise with no issues - even managed to hike around on the Juneau ice field with nary a bathroom for miles. Foot neuropathy still there, but is not keeping me awake at night - fingers crossed my luck holds! Glad you got a good report card!

Terri

Vacations are the best. Glad you got time to enjoy yourself. Tingles aren't keeping me down, but I do notice I get tired more at end of day. The clear CT was a great anniversary gift. Looking forward to next stage.
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

AppleTree
Posts: 218
Joined: Fri Mar 18, 2016 8:16 am

Re: what happens after chemo?

Postby AppleTree » Tue Sep 25, 2018 2:22 am

I am on a scan schedule. But I also see a nutritionist every month. I am 5'8 and down to 103 this week, grrr.I also see an oncologist councillor. Plus my hospital has free strength training, group therapy. It is 2x a week and I am pretty sure it is 2 months. So, I do not feel like I have been dropped like a hot potato. Plus, my port gets flushed every month and I get my Sandostatin shot. Next PET is mid October. Oncologist wants me to keep the port for a year (sigh).
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 right 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 PET...CLEAR!


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