Xeloda Avastin Maintenance Plan

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Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Mon Sep 14, 2020 12:08 pm

So its been the first 3 weeks of doing the Xeloda and Avastin and so far very tolerable. My first blood work after taking this regimen for the 3 weeks CEA went from 3.9 to 5.1. My CEA is a good indicator, and it makes me worried that it went up from this regimen, because I don't want to do FOLFIRI again. Has anyone seen it go up and then back down because Xeloda is slower to work since it is a pill. Always something with this journey LOL...

My oncologist said he is not worried unless its in the double digits.

Best
Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

lovelife789
Posts: 161
Joined: Thu Aug 24, 2017 5:28 am

Re: Xeloda Avastin Maintenance Plan

Postby lovelife789 » Mon Sep 14, 2020 6:15 pm

Hi Riki,

I have no long term experience with XELODA to share. Glad that you can tolerate it well. But my experience with CEA can be of reference somehow. My CEA jumped during FOLFOX's second/third infusion. It jumped from low 20s to high 30s. Was told it is normal for chemo-caused CEA jump to not show its face during the first round. Dr had seen CEA jump during the first or at random cycle along the way.

Mine went back down after the 4th infusion and kept it that way for some time after that. Hope it is the case for you.

Lovelife
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Mon Sep 14, 2020 11:54 pm

Hi Riki, I hope and pray its a cancer kill action in the CEA rise. Whats your MCV?
Mine went down 3 pts then went up a point so now a PET is scheduled. I am only on xeloda for now, 1500 b.i.d I had bloodwork again today so will see in a few days if cea is stable or down and MCV is still up.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Wed Sep 16, 2020 11:31 am

Hi Beach,

MCV 94.0 fL Range - 80.0 - 100.0 fL - Current one

Past Results 89.4 89.5 90.9 88.0 88.5 88.5 90.8 92.5 92.5 94.0 (current)

I hope so too. We will find out on next test. I just started my 7 days Xeloda again today. :)

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Xeloda Avastin Maintenance Plan

Postby stu » Wed Sep 16, 2020 4:00 pm

Hi ,
My mum used Xeloda two years in a row . Both times her CEA went up and did not come back down until her 6 cycles were over . However her scans showed significant shrinkage each year .
Take care ,
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 .

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Wed Sep 16, 2020 5:22 pm

Hi Riki, your MCV is trekking up. That's really good!!! My onc was excited mine trekked up from 90's to just over 100 and told me its a sign the chemo is working good with the dose I am on. I got to digging papers about MCV and chemo (and looking here). Research it if you get a chance.
I started taking beta glucan 1,3/1,6 powder in my morning coffee to get my MCV and WBC up. Whew! Its alot to process.
Now I am researching high dose vitamin D to have a discussion with the ND.
I wish my onc would let me do something different besides 14 on 7 off.
I am happy for you with tolerating xeloda/avastin so well. I'm on the xeloda today too, day one of 14.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Thu Sep 17, 2020 8:52 am

Thanks Stu - That makes me feel better.

Beach - Excellent information I didn't know that, so that's good too. Always nice to hear something good when every time I go to Onc, always CEA something LOL...but he is never concerned, yet we as humans who have the diagnosis are always concerned.

Day 2 of 7, just finished eating a plain bagel with butter lol...time for Xeloda. I take multivitamins GNC Metabolism and Energy.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

sdino
Posts: 85
Joined: Tue Mar 28, 2017 5:32 pm

Re: Xeloda Avastin Maintenance Plan

Postby sdino » Thu Sep 17, 2020 2:28 pm

My Wife was on Xeloda + Avastin for lung mets from August 2017 to December 2018 where she was stable and CEA remained good. Then, met progression started slowly happening and CEA upticked in January 2019 where NIH hauled her down for a TIL trial in Early April 2019.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: 25+ Bilateral ranging 4mm-5.0cm
MSS, KRAS-G12D; TP53
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 7/2020 lung met shrinkage 36%, 3 lung mets left, two Liver mets destroyed by TILs
Brain tumor removal 3/2020
CEA:16-11/16; 5 -9/18; 63 -8/19; 1 -1/20; 0.8-5/20

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Thu Sep 17, 2020 4:57 pm

Hi sdino, I researched the TIL trial early on when dx. It was on my list to get more info.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Thu Sep 17, 2020 5:01 pm

Right Riki! Its not them, its us. Personally I think SOC kept their lip zipped when chemo alone wasn't working well and just keep poisoning me when I could be doing something to help the chemo work but they would never suggest anything but chemo. Be your own advocate!!!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Tue Oct 27, 2020 1:18 pm

Hi Guys,

Just an update, Cycle 4 just completed and CEA gradually keeps going up, I hate CEA....from 5.0 to 6.1 to 8.1 now. Oncologist said that let's see what CT Scan shows and if we have to throw in some Irinetocan (big boy) to bring it back down. Ugh!! I hate Irinetocan, but I will do it if it brings it down, and then continue the maintenance. But I could be jumping the gun here, so cross fingers that its nothing or something they can just zap with Radiation.

Cancer really sucks. Other issue I have is gas just stuck in my abdomen, lower track and it goes and come, eventually it get's out, but I think when I have a bowel movement is when its better. This usually happens if I don't have a bowel movement for a day, which probably means I am constipated, well I know I am cause the poop is like little balls. For those of you with Colostomy do you have this occasional issue? Does Metamucil help with this or recommend something?

Thanks,
Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

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

Re: Xeloda Avastin Maintenance Plan

Postby NHMike » Tue Oct 27, 2020 1:26 pm

I was on Xeloda for a little over six months and my CEA rose through treatment. I attributed to an increasing exercise load but it could have been the Xeloda as well. The oncologist was worried enough by it that he ordered a CT scan in the last month.
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

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Fri Oct 30, 2020 10:00 am

Good morning Riki, I'm with you on keeping my fingers crossed its nothing and if so radiation can get it.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Wed Nov 11, 2020 11:08 am

Sixth cycle starts today.

CEA is 16....WTF.

CT scans clear NED. Doctor is not concerned by CEA but we do a pet scan maybe next time in February.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

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

Re: Xeloda Avastin Maintenance Plan

Postby NHMike » Wed Nov 11, 2020 11:37 am

Rikimaroo wrote:Sixth cycle starts today.

CEA is 16....WTF.

CT scans clear NED. Doctor is not concerned by CEA but we do a pet scan maybe next time in February.


That's pretty high. My doctor said he worries in the high-teens but mine was a lot lower than that when he ordered a CT. We're all different.
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


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