Xeloda med concerns and timing

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Kiter
Posts: 19
Joined: Tue Oct 06, 2020 7:59 pm

Re: Xeloda med concerns and timing

Postby Kiter » Thu Oct 07, 2021 5:43 pm

Kiter wrote: I had my CT Scan today and the tech kinda screwed up by actually commenting on it to me a bit. Surprisingly she said I only had a cyst on my liver and not a cancer tumor... hummmmmm. But, until I hear that from the official reviewing doctor I'm going to assume she was wrong and there is still a tumor there.


Ya, tech was wrong. Multiple tumors on liver all significantly bigger than last time. Same with the lungs. Oh well, back to Chemo for me, doh!
Diag Aug 2020, age 56, male
Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
FolFox+Avastin 10/5/20 w/CEA 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th rnd 4/6/21: CEA 8; CT Scan 85-90% reduction in tumors
Sept 2021 CEA low 600s
Oct CEA 1700; CT scan shows tumor growth
Started Avastin + Xeloda
2 weeks later CEA at 2550, cancelled Xeloda
11/1/21 started FolFiri+Avastin every 2 weeks
June 2023; round 45; CEA steady at ~1000. Tumors unchanged. Blood tests look good

Brearmstrong
Posts: 112
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Xeloda med concerns and timing

Postby Brearmstrong » Sat Oct 09, 2021 7:10 pm

Sorry to hear this and that tech had no business saying anything. That is frustrating. Hopefully your onc puts you on Folfiri and it knocks it back. Keep on moving forward.

-Brenda
50 F diag 1/17
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Nov 17 PET p aortic nodes Stage IV
Folfori w/avastin
May 18 surgery on nodes xeloda 2yr
Aug 18-May 20 NED
July 20 hysterectomy
July 21 vats right lung
Clinical trial- failed liver Mets biopsy shows now poorly differentiated carcinoma.
HAI pump at MSK may 2022
Nov met to pancreas- causing pain
Radiation ablation to pancreas Dec 22
New lung Mets watch and wait

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WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Xeloda med concerns and timing

Postby WriterGirl1969 » Wed Oct 13, 2021 8:02 pm

Kiter wrote:
Kiter wrote:Question 1: how critical is food with Xeloda and how much food is really needed?
Question 2: What's with the "don't exercise after taking" instructions... and is 30 min enough time after taking to address this?

Additional Question 3: Has anyone seen an increase in their Nueropathy with Xeloda? It's listed as an 'uncommon' side-effect, but since I already have it...???


I had Xeloda (oral) 2 weeks on 1 week off as monotherapy (was not every 12 hours). I had pre-existing neuropathy also (both feet). My oncologist opted to not give me Oxaliplatin due to that, as the Oxa tends to cause neuropathy and they didn't want to make it worse. Due to my height and weight, I had a high dose / amount of Xeloda. I did not experience any increased neuropathy due to the Xeloda, at least that I could tell.

I cut back on some of the "fortified" cereals, but otherwise did not change my diet or exercise very much other than to drink as much water as I could. I'd heard this was an easy but very good way to help minimize side effects. I was very fortunate, and my body reacted without many side effects to the Xeloda until round 7, at which time I started to notice the hand/foot syndrome popping up. I did some research and found that most studies indicated Xeloda reached maximum effectiveness at 7 days, and that 1 week on 1 week off regimens were just as effective with less side-effects. My oncologist didn't seem to think the studies I referenced were good enough to change his regimen, so I changed it myself and my side-effects got much better. for my last 2 rounds.

Everyone has their own reactions and journeys, but I hope this info is helpful! :)
Smiles, hugs and prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

Kiter
Posts: 19
Joined: Tue Oct 06, 2020 7:59 pm

Re: Xeloda med concerns and timing

Postby Kiter » Thu Oct 14, 2021 12:05 am

WriterGirl1969 wrote:Everyone has their own reactions and journeys, but I hope this info is helpful! :)
Smiles, hugs and prayers,
Tracy


Thx Tracy, very good to know. Sounds a lot like my starting point too.
Diag Aug 2020, age 56, male
Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
FolFox+Avastin 10/5/20 w/CEA 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th rnd 4/6/21: CEA 8; CT Scan 85-90% reduction in tumors
Sept 2021 CEA low 600s
Oct CEA 1700; CT scan shows tumor growth
Started Avastin + Xeloda
2 weeks later CEA at 2550, cancelled Xeloda
11/1/21 started FolFiri+Avastin every 2 weeks
June 2023; round 45; CEA steady at ~1000. Tumors unchanged. Blood tests look good

Kiter
Posts: 19
Joined: Tue Oct 06, 2020 7:59 pm

Re: Xeloda med concerns and timing

Postby Kiter » Thu Oct 14, 2021 12:12 am

Brearmstrong wrote:Sorry to hear this and that tech had no business saying anything. That is frustrating. Hopefully your onc puts you on Folfiri and it knocks it back. Keep on moving forward.

-Brenda


Ehh, at least I’ve learned to not trust such sources so I never took it seriously. Got my CEA number back too, more bad news as it’s over 1700 (again). Doctors office also dropped the ball on getting me started on the new chemo and we have another week delay before that can happen. In the meantime I’ve been able to take care of more things on the home front so it’s not a complete loss.
Diag Aug 2020, age 56, male
Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
FolFox+Avastin 10/5/20 w/CEA 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th rnd 4/6/21: CEA 8; CT Scan 85-90% reduction in tumors
Sept 2021 CEA low 600s
Oct CEA 1700; CT scan shows tumor growth
Started Avastin + Xeloda
2 weeks later CEA at 2550, cancelled Xeloda
11/1/21 started FolFiri+Avastin every 2 weeks
June 2023; round 45; CEA steady at ~1000. Tumors unchanged. Blood tests look good

User avatar
WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Xeloda med concerns and timing

Postby WriterGirl1969 » Tue Oct 19, 2021 10:43 pm

Kiter wrote:Thx Tracy, very good to know. Sounds a lot like my starting point too.


That's what I thought, too. Please feel free to ask me any questions I might be able to give input on. The people here are just wonderful, and provide such good information. They truly turned my life around.
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

User avatar
horizon
Posts: 1669
Joined: Tue Apr 12, 2011 10:10 pm

Re: Xeloda med concerns and timing

Postby horizon » Sat Oct 30, 2021 3:46 pm

Kiter wrote:
horizon wrote:I took the Xeloda immediately after dinner

Are you taking it every 12 hours? I.e. does this mean your morning dosage is really early in the morning?


Sorry, I'm just now seeing this. I was on Xeloda for 6 months but that was 10 years ago so details are fuzzy. I definitely remember that I took it twice a day.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

Kiter
Posts: 19
Joined: Tue Oct 06, 2020 7:59 pm

Re: Xeloda med concerns and timing

Postby Kiter » Wed Nov 03, 2021 12:27 am

Thanks all for the great suggestions, but it turns out Xeloda is no longer the treatment plan.
My CEA is still climbing so Xeloda is out, and FOLFIRI+Avastin is the regiment henceforth.
This will be much like the FOLFOX I did before so I pretty much know the trials and tribulations with this cocktail.

Rikimaroo wrote:AT 600 CEA I am surprise your Onc is putting you on that regimen which is really maintenance. My Onc would be putting me right back on FOLFIRI to knock it back down especially given that there might be CT/Pet Evidence of Cancer.

Yep, you nailed it Rikimaroo, but it took my CEA hitting 2550 before we changed direction. Hopefully, we can knock it back again like last time. After which I won't be taking a 6 month vacation before getting back on some maintenance regiment.
Diag Aug 2020, age 56, male
Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
FolFox+Avastin 10/5/20 w/CEA 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th rnd 4/6/21: CEA 8; CT Scan 85-90% reduction in tumors
Sept 2021 CEA low 600s
Oct CEA 1700; CT scan shows tumor growth
Started Avastin + Xeloda
2 weeks later CEA at 2550, cancelled Xeloda
11/1/21 started FolFiri+Avastin every 2 weeks
June 2023; round 45; CEA steady at ~1000. Tumors unchanged. Blood tests look good

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

Re: Xeloda med concerns and timing

Postby Rikimaroo » Wed Nov 03, 2021 9:29 am

Looking forward to hearing good news that CEA is back down. FOLFIRI is a tough drug, made me salivate so much I spit for 5 days after getting off of it. I also had loss of appettite, diarrhea (but I have a colostomy so easier) and just plain old fatigue. After FOLFIRI I am down for about a 1 week, maybe a few additional days in regards of energy and eating, etc....It works though and I was on it every 3 weeks.

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.

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Re: Xeloda med concerns and timing

Postby Nor Cal » Thu Nov 04, 2021 2:31 pm

Kiter wrote:Thanks all for the great suggestions, but it turns out Xeloda is no longer the treatment plan.
My CEA is still climbing so Xeloda is out, and FOLFIRI+Avastin is the regiment henceforth.
This will be much like the FOLFOX I did before so I pretty much know the trials and tribulations with this cocktail.

Rikimaroo wrote:AT 600 CEA I am surprise your Onc is putting you on that regimen which is really maintenance. My Onc would be putting me right back on FOLFIRI to knock it back down especially given that there might be CT/Pet Evidence of Cancer.

Yep, you nailed it Rikimaroo, but it took my CEA hitting 2550 before we changed direction. Hopefully, we can knock it back again like last time. After which I won't be taking a 6 month vacation before getting back on some maintenance regiment.


Sorry to hear about the trials and tribulations. I will say that FOLFIRI was easier for me to deal with than the cocktail with Oxaliplatin. 5-FU and Irinotecan are no walk in the park, but hopefully you'll find it a somewhat easier cocktail to deal with.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 55 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2


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