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Re: Xeloda med concerns and timing

Posted: Thu Oct 07, 2021 5:43 pm
by Kiter
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!

Re: Xeloda med concerns and timing

Posted: Sat Oct 09, 2021 7:10 pm
by Brearmstrong
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

Re: Xeloda med concerns and timing

Posted: Wed Oct 13, 2021 8:02 pm
by WriterGirl1969
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

Re: Xeloda med concerns and timing

Posted: Thu Oct 14, 2021 12:05 am
by Kiter
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.

Re: Xeloda med concerns and timing

Posted: Thu Oct 14, 2021 12:12 am
by Kiter
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.

Re: Xeloda med concerns and timing

Posted: Tue Oct 19, 2021 10:43 pm
by WriterGirl1969
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.

Re: Xeloda med concerns and timing

Posted: Sat Oct 30, 2021 3:46 pm
by horizon
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.

Re: Xeloda med concerns and timing

Posted: Wed Nov 03, 2021 12:27 am
by Kiter
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.

Re: Xeloda med concerns and timing

Posted: Wed Nov 03, 2021 9:29 am
by Rikimaroo
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

Re: Xeloda med concerns and timing

Posted: Thu Nov 04, 2021 2:31 pm
by Nor Cal
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.