Xeloda Avastin Maintenance Plan

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beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Sat Nov 14, 2020 3:27 am

Hi Riki, can you push for a PET sooner than Feb? If onc won't do it maybe surgeon would?
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rikimaroo
Posts: 324
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Wed Nov 18, 2020 3:14 pm

They don't like to do scans so close to each other. I think recommended is 3 months. He switched to Cat Scans because he knew Pet scans wouldn't find anything at the time my CEA was lower. I am not 100% clear if a pet scan would see something the cat wouldn't, because I would assume the cat scan would see a spot, and then pet scan would just confirm. That's the simple defintion below of the difference between the two LOL...

CT scans provide clear images of bones and can detect abnormalities in soft tissues; PET scans provide images of biological processes within the body. Think of it as CT scans show the structures, while PET scans show how the organs and tissues within the structures work.

Either way I am so sick of this. Tired of taking this nasty xeloda pills, they taste horrible, I try not to taste them, but the though of popping them in my mouth makes me want to throw up.

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
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

stu
Posts: 1396
Joined: Sat Aug 17, 2013 5:46 pm

Re: Xeloda Avastin Maintenance Plan

Postby stu » Wed Nov 18, 2020 4:49 pm

That’s how my mum reacted to xeloda. Upward trending CEA , think it got to around 11/ 12 . Then terrible colic she had to take buscopan for . She was desperate for a break from them . Did a fantastic job though !
Hang on in there ! Thinking about you .
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 .

Claudine
Posts: 440
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Xeloda Avastin Maintenance Plan

Postby Claudine » Thu Nov 19, 2020 11:37 am

My husband also hated the Xeloda pills, felt like you Riki - wanted to throw up just thinking of them.
His last CEA (late September) was 24!!! Despite clear-ish scan (he still has that damn lytic tumor in his L4). Really worried what the next one (in a month) will show. I suspect if no progression but still high CAE, his onc may request a PET scan, just like you...
Keep fighting XXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

zephyr
Posts: 297
Joined: Thu Aug 18, 2016 7:31 am

Re: Xeloda Avastin Maintenance Plan

Postby zephyr » Fri Nov 20, 2020 12:58 pm

I've been on Xeloda/Avastin for almost 2 years. I never noticed much change in my CEA but that was never a good indicator for me. Even at Stage IV before my resection, my CEA was only 4. That said, during the first 6 months on Xeloda, my scans were showing slight progression. Both of my regulars oncologists said to wait, give it a chance to work, sometimes it takes time. Since the progression was so small and the alternatives (e.g. Folfiri) didn't sound so great, I was willing to give it time. It took over a year but I finally reached a stable point.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 - ? Xeloda/Avastin, SBRT, continue Xeloda/Avastin

User avatar
beach sunrise
Posts: 298
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Fri Nov 20, 2020 1:26 pm

zephyr, are you still under the care of an ND also?
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

zephyr
Posts: 297
Joined: Thu Aug 18, 2016 7:31 am

Re: Xeloda Avastin Maintenance Plan

Postby zephyr » Fri Nov 20, 2020 6:15 pm

beach sunrise wrote:zephyr, are you still under the care of an ND also?


Yes
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 - ? Xeloda/Avastin, SBRT, continue Xeloda/Avastin

Rikimaroo
Posts: 324
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Sun Nov 22, 2020 11:57 am

Zephyr, Claudine,

Thanks for the posts gives me hope. I just finished my sixth cycle, the 7th starts this Wednesday. I think pills are slower and given that my Scans didn't show anything, I shouldn't be too concerned. Will wait for PET and hope things go down cause CEA is really stressful.

Claudine - hope hubby is doing well, it is not fun taken Xeloda, but definitely better then the alternative FolFIRI.
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
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri


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