Xeloda Avastin Maintenance Plan

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beach sunrise
Posts: 1027
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 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 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
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: 1612
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: 808
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

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

zephyr
Posts: 362
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, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

User avatar
beach sunrise
Posts: 1027
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 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

zephyr
Posts: 362
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, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

Rikimaroo
Posts: 436
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
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.

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

Re: Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Tue Dec 01, 2020 2:07 pm

Some pre Christmas good news. My CEA is now 12.9 from 16.1, so down and I hope this begins a downward trend. This is big relief, I hope it keeps going down. Will continue to take the Xeloda. I skipped a day sometimes, and sometimes take less pills, does anyone else do this? Stu did you Mum do this? My doctor told me 4 morning and 4 at night, but if I am feeling crappy I can go back to 3x3. Sometimes I take 4 in the morning and skip the night, but most of the time I take it as recommended.
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: 1612
Joined: Sat Aug 17, 2013 5:46 pm

Re: Xeloda Avastin Maintenance Plan

Postby stu » Tue Dec 01, 2020 5:30 pm

Hi ,

That it great news . So encouraging .
I think they had to be stopped early a couple of times by a day or two ! She did drop one once just as I was hoovering by the bed . Up the hoover it went . :D

Or than that she stuck to the plan . It was harsh on her digestive system but good results so she did her best !
Enjoy this good news!
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 .

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

Re: Xeloda Avastin Maintenance Plan

Postby Rikimaroo » Sat Feb 27, 2021 12:36 pm

Just wanted to give everyone an update. Back to Chemo on March 17th, Folfiri, same as before. CEA went from 21 to 50 on my next 3 week appointment. Did a Pet Scan and shows basically same thing as of May 2020 when I did my last pet scan, the CT Scans in between didn't show anything. Oncologist didn't seem to concern as no new cancer in any organs, other then local recurrence (same one since the get go) and some lymph node involvements. He said we just have to go back 4-6 rounds of folfiri beat it back down and go from there.

I guess this is my life, but hoping for a miracle remission....I guess I will lose some weight on the positive note LOL....It does suck doing kick my ass chemo again, but meh at this point I don't know what to expect anymore.

Staying positive and strong.

Best Regards,
Rikimaroo
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.

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Sat Jun 26, 2021 12:02 am

Rikimaroo, where are you at? Been thinking about you alot. Update when you can.
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 » Mon Jul 05, 2021 3:42 pm

Hey there my friend. I am still alive and kicking LOL....but on maintenance chemo. My oncologist and I spoke about AVastin/5fu vs the pills since Xeloda is way more toxic. I tried it and its not as hard as doing it with Irinotocan. It's been rough with gas pains for some reason, but I saw a gastro and he prescribe Dicyclomine which has helped. But I am still here kicking it and enjoying life as much as I can, cause god knows when this thing is going to take me, its inevitable without a cure, I don't know when, but just keeping my self busy and happy. THanks for checking on me <3 - How are you doing?
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.

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda Avastin Maintenance Plan

Postby beach sunrise » Tue Jul 06, 2021 11:33 pm

Hey you!!! Good to see an update. I was thinking maybe just needed a break from the forum and hopped on a cruise ship headed somewhere.
There is an integrative onc down around where you live who has some out of the box thinking. If you want his info send me a message.
My way, doing good. Staying steady with 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


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