what happens after chemo?

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Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

what happens after chemo?

Postby Caat55 » Mon Jul 09, 2018 6:18 pm

What happens after the infusion and chemo is over? Scans, blood work, follow up when?

I was told to come back in 6 months, seems odd after all this. Is this typical? I read through many summaries, can't find an answer.
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

NHMike
Posts: 1687
Joined: Fri Jul 21, 2017 3:43 am

Re: what happens after chemo?

Postby NHMike » Mon Jul 09, 2018 6:22 pm

Caat55 wrote:What happens after the infusion and chemo is over? Scans, blood work, follow up when?

I was told to come back in 6 months, seems odd after all this. Is this typical? I read through many summaries, can't find an answer.
S


See my post in the other thread. One person (either Miss Molly or O Stoma Mia I think) suggested that I find out what happens after chemo so I contacted my oncologist at Dana Farber and my surgeon at Brigham and Women's to get a feel for what they do. Of course their approaches differed somewhat on the reversal schedule but the surgeon has final say on that. Moving from the local hospital to Dana Farber for surveillance will be a bit tricky I think. I will probably need to inform DFCI about the CEA spike too - and I do hope that it goes back down or that it's just exercise-related.
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

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

Re: what happens after chemo?

Postby O Stoma Mia » Mon Jul 09, 2018 10:53 pm

Caat55 wrote:What happens after the infusion and chemo is over? ...

What is supposed to happen is that the patient is given two written documents: (1) a brief summary of the patient's DX and all treatments given to date, and (2) a comprehensive 5-year surveillance plan that includes not only monitoring for possible recurrences but monitoring for the full range of health-related problems expected due to prior surgeries, radiation, and chemo.

The first document is called the TS (Treatment Summary). The second document is called the SCP (Survivorship Care Plan):

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59801&p=475292#p475292

You should be receiving these two documents in due course. If you do not receive these written documents, you should request them because they are very important for comprehensive followup.

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Tue Jul 10, 2018 12:04 am

O Stoma Mia wrote:
Caat55 wrote:What happens after the infusion and chemo is over? ...

What is supposed to happen is that the patient is given two written documents: (1) a brief summary of the patient's DX and all treatments given to date, and (2) a comprehensive 5-year surveillance plan that includes not only monitoring for possible recurrences but monitoring for the full range of health-related problems expected due to prior surgeries, radiation, and chemo.

The first document is called the TS (Treatment Summary). The second document is called the SCP (Survivorship Care Plan):

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59801&p=475292#p475292

You should be receiving these two documents in due course. If you do not receive these written documents, you should request them because they are very important for comprehensive followup.


As always you come through. Thank you I will ask about both documents. See you in six months just doesn't feel right.
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

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susie0915
Posts: 840
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: what happens after chemo?

Postby susie0915 » Tue Jul 10, 2018 8:13 am

After I finished chemo, my oncologist scheduled a ct scan one month later and saw her also where she also ordered CEA test. I think the first 2 years I saw my surgeon and oncologist every 3 months, then after 2 years I am now on a 6 month schedule. I think after my scan in November if all is well will graduate to yearly scans but not sure.
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

Deb m
Posts: 422
Joined: Tue Jan 14, 2014 10:08 am

Re: what happens after chemo?

Postby Deb m » Tue Jul 10, 2018 8:17 am

I think 6 months is to long of a wait. I think you should be having a scan and blood work with CEA level. We were a stage II and we were checked every three months for all this for the first year and a half, then it went to every six months for two years then just once a year for the last two years till we reached the 5 year mark.

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Tue Jul 10, 2018 9:58 am

Thank you Deb and Susie. I will be getting CEA today after pressing for it yesterday, I haven't had one since May, before that in January. Wonder how I get results as it doesn't show up on portal.
Waiting to hear from surgeon, 2nd opinion oncologist.
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

NHMike
Posts: 1687
Joined: Fri Jul 21, 2017 3:43 am

Re: what happens after chemo?

Postby NHMike » Tue Jul 10, 2018 10:01 am

Caat55 wrote:Thank you Deb and Susie. I will be getting CEA today after pressing for it yesterday, I haven't had one since May, before that in January. Wonder how I get results as it doesn't show up on portal.
Waiting to hear from surgeon, 2nd opinion oncologist.
S


My oncologist did one before every infusion. It took a while to show up on my portal even though the oncologist had the result the next day.
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

benben
Posts: 297
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: what happens after chemo?

Postby benben » Tue Jul 10, 2018 4:01 pm

I'm nearly 8 months post Chemo.

Mostly post treatment you should relish the rebirth of your physical being, because it's nothing short of rebirth in my mind.
From strength zapping, energy crushing, mental straining, neuropathy inducing, taste bud altering chemo beat down to a gradual incline into a physical sensation of well being.
Enjoy this transition.

My schedule:
----------------
CT Scan was done prior to last chemo treatment - (showed NED - YAYE!)
Port flush - 6 weeks post chemo.
Blood draw / Onc followup visit - 6 weeks from Port Flush (full CBC and CEA).

The port flush and blood draw cycle has been ongoing so blood tests/cea every 3 months

4.5 months post chemo I had a colonoscopy. Showing all clean and good - still little inflammation.

July 24th next CT scan (so 8 months from last scan). - will receive 3 month blood test and ONC followup post CT scan.

If it is still clean (I can't imagine it not given how much energy I've got now) I will be moving to the next wave of followup which consists of:

Removal of port (YES! - so looking forward to that. Quite difficult to start dating new people with a port in, let alone the diagnosis revelation. UGGh.)
Move to 4 month Blood / CEA level and ONC visits. Colonoscopy moved to 2 year cycle.


Keep on keep'n on!
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treatments
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, but CEA 4.6 :(
8/30 CEA 2.6

Ron50
Posts: 662
Joined: Fri Feb 10, 2006 7:04 pm

Re: what happens after chemo?

Postby Ron50 » Tue Jul 10, 2018 4:02 pm

Hi Caat55,
At the end of my chemo( 48 sessions over a year) my onc did one last scope and scan then handed me back to the surgeon. He did not expect me to survive beyond three years and he continued cea and scans every 6 months for nearly seven years before he finally declared I was cured of that caner. I have remained cancer free since and am now over 20 years. I was on 3 yearly scopes but they were getting very lax and could not understand why I even needed a scope at all. My last scope was in April last year after 3 1/2 years. They removed 4 tubular adenomas the largest 12mm. Now I am on 2 yearly scopes for life.
I have learned that I am responsible for my survival and if I don't ensure my ongoing surveillance, nobody else will. Best wishes Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

heiders33
Posts: 277
Joined: Sat Nov 04, 2017 11:08 am

Re: what happens after chemo?

Postby heiders33 » Tue Jul 10, 2018 4:50 pm

My follow up is basically the same as benben’s. Blood draw every three months and CT scans every 6 months, for two years. Had my first CT scan three months after treatment ended. It found a liver spot so I’m having a PET done on August 1. I’m supposed to have a colonoscopy done once a year for five years, but I haven’t scheduled it yet because I want to get this liver thing sorted.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Wed Jul 11, 2018 5:46 pm

My surgeon needs a treatment summary so I called local oncologist and was told I needed to come in for another appointment. I asked why as seeing me shouldn't be necessary for them to basically give a historical timeline of treatment, it is all in medical record, but they insist. They are sticking with a 6 month follow up appointment. The surgeon also wants a barium enema so I messaged GI doctor here to see if they do it and if so how far out they are booking. I may just go ahead and do all the tests, appointments i Bay Area as they can get me in sooner, a week or so, verse months up here.

I appreciate everyone's feedback, affirmed my belief that they were missing something here. I want to be finished but it to be right so I can enjoy the life this long and uncomfortable treatment allows me.

Can't wait to have a vacation. Honestly the World Cup has been my salvation and the British Baking Show this last round, TV vegging.
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

NHMike
Posts: 1687
Joined: Fri Jul 21, 2017 3:43 am

Re: what happens after chemo?

Postby NHMike » Wed Jul 11, 2018 7:06 pm

Caat55 wrote:My surgeon needs a treatment summary so I called local oncologist and was told I needed to come in for another appointment. I asked why as seeing me shouldn't be necessary for them to basically give a historical timeline of treatment, it is all in medical record, but they insist. They are sticking with a 6 month follow up appointment. The surgeon also wants a barium enema so I messaged GI doctor here to see if they do it and if so how far out they are booking. I may just go ahead and do all the tests, appointments i Bay Area as they can get me in sooner, a week or so, verse months up here.

I appreciate everyone's feedback, affirmed my belief that they were missing something here. I want to be finished but it to be right so I can enjoy the life this long and uncomfortable treatment allows me.

Can't wait to have a vacation. Honestly the World Cup has been my salvation and the British Baking Show this last round, TV vegging.
S


My surgeon asked me for the Barium Enema a week before the reversal so I assume that this is what you're working on. My local oncologist's hospital, Dana Farber and Brigham and Women's area all on EPIC (Electronic Medical Records system) so they all have access to my records, regardless of where they are.
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: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: what happens after chemo?

Postby Caat55 » Thu Jul 12, 2018 1:31 pm

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
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: 1687
Joined: Fri Jul 21, 2017 3:43 am

Re: what happens after chemo?

Postby NHMike » Thu Jul 12, 2018 1:36 pm

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.
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


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