All about Xeloda
Comments
-
Snook...just had 3 women on FB post that they do Xeloda 7/7 and are NED and have been.
0 -
Nichole, Thanks for all the info. I don't know. How do you decide to trust your ONC or not? It's all very confusing. I read your links, the first one I knew about. The second one was confusing. The print was so small and when I enlarged the text it blurred out.. (my computer???) But what I understood from it was it was computer stimulations predicting various out comes. Not actual test results. And then I saw at the bottom that another trial needed to be done to confirm what the computer generated. Is that the way you took it too?
All the stress of the last 4 mos. has now brought on daily migraines. I figure that I'll do it my ONC's way for a few cycles and if I can't manage, he did say he'd change it to 7/7. And another thing I tell myself is we do know for sure that 14/7 works. So it's a question of side effects.
I have to trust somebody. Another thing, it might be a moot point. I haven't had scans yet, so we don't even know if it's working for me. Will scan first week of Dec.
Thanks for all your help, it's appreciated.
0 -
Snooky, Yes I believe you have to trust your MO as much as you can. I TOTALLY trust my new MO I love her. Is she as unconventional as I would like...NO..but thats what I see the ND for. The point is people are NED right now on 7/7 . You are on facebook go to the stage 4 page I posted a thread there you will see the women that replied and are on 7/7 NED.... If you go to 14/7 thats fine too..but if your side effects are too much then at least you know that people are NED on 7/7 ... I mean I would personally rather start at 7/7...because I am doing other things to block the CSC's..so if I need to go up I will. I value Pubmed and the women I spoke to personally but thats just me.
0 -
I do Xeloda 7 on and 7 off. My scans have been stable! Been on since Feb! I can handle the side effects, better than getting bad results!
Ilene
0 -
Thank you leftfootforward, I hope your heart function improved followIng a break from Herceptin.
I have seen that tykerb is also used sometimes, - actually I spoke to two oncologists, the first proposed tykerb, but my primary oncologist prefers Herceptin.Well started my 4th cycle Wednesday and all is well, however the fatigue is creeping up on me.
Take care,
Meja
0 -
I started Xeloda in Feb of this year. My MSK doctor advised it and recommended the 7/7 schedule. When I got back to my "home" MO, who is head of a Richmond cancer institute, he said "Good!" He went on to say that the normal protocol with oncologists, in general, is to start a treatment at the highest dose allowable and then back off per the patient's side effects and reactions. He would have started me at 14/7 for that reason but was happy to follow the guidance of the MSK breast cancer specialist and start me on the 7/7 schedule.
We started at a dosage of 3 pills (1500 mg) in the AM and 2 pills (1000 mg) at night, but we backed off to 1000 mg/1000 mg because of HNF.
As of now, or at least per my October PET scan, I am stable. My mets appear all to be sclerotic as of that scan.
0 -
This is all great news about being stable and 7/7 I was hearing many of the same things on FB
0 -
Hi Everyone! I am new to this group and will be starting Xelota tomorrow. I did integrative/alternative treatment at a Cancer Clinic in Reno, NV for 3 weeks, which included IPT (Insulin Potentiation Therapy Low dose Chemo) and IV Supplements. Now I am on Xelota for 3 months to see how I do. My Reno Oncologist prescribed 500 mg -3 tabs 3 x day for a total of 1500 mg. Just wondering how everyone is doing with side effects and what dosage are you taking. I am hoping I can work my full-time job without any problems because I've already taken a lot of time off and no longer have any days. Hoping for good results with this treatment, otherwise will have to consider just doing Herceptin and Perjeta again.
0 -
Hello!
What dosage of Xeloda are you taking? I will be starting tomorrow 7 days on 7 days off. My Oncologist presribed 500 mg to be taken 3 times a day for a total of 1500 mg. Are you having any side effects and are you able to work?
0 -
Goldie0827, that's great that you haven't had any side effects. What was your dosage and schedule? I am hoping I will handle it without any major SE's. I start tomorrow and will be taking 500 mg 3 x a day...total 1500 mg. 7days on/7days off.
0 -
Hi,
I've been on Xeloda 2x a day 3 pills am and pm which is 1500 mg each time for 7 days on and 7 days off. I've taken it since February and haventhad many side effects. I do have stomach issues but had before. Nauseousness is the biggest one but Zofran works for that. I hope you do well on it! Ilene
0 -
So I just heard some HORROR stories on facebook about Xeloda...HORROR...like a tumors in the liver growing from 3.0cm to 9.8cm in 2 weeks!!!! then going into liver failure and all this when they didn't even have liver mets (some of them) to begin with!!! I didn't ask or start the thread someone did in the Stage 4 cancer because she went into liver failure after 2 weeks on it she was asking people if they had a similar experience..... I am scared right now
0 -
Nichole, Try to relax. I know, not easy. But remember that over the years there have been hundreds of patients that this did not happen to. These treatments are poisons that we are putting into our bodies, and we never know how each person will react.
But what choice do we have? You have to have a positive attitude that it will work for you.
If you think it's going to turn out wrong, it just well might. The connection between out throughts and our body responses is truly amazing. This is something that I know about since I've had OCD for years. Don't obcess about the negative. Focus only on the positive AND trust in God that he will make it right.
0 -
sharapril10...at 1,500 a day, your SE's should be mild. I am only on 2,000 but the HFS get a bit nasty.
Nicole...in 18 years I have never heard or read a story like that. However, my first liver CT showed a 3cm liver tumor, and a month later a larger hospital showed it as 9cm, mainly because the better scan showed the total infiltration.
But that was when I wasn't on any chemo. Once I went on Gemzar with Hercpetin, the numerous tumors were gone after 9 months.
0 -
Hi all, Ive had a mixed response to Xeloda. Goldie, like you my bone mets continue to progress with an increase in TM every draw, but the rest of my body is clean (for now). My MO wants to continue on Xeloda unless he sees a drastic increase in TM's and any visceral organs are affected. Does anyone else see this sort of response and how did y'all start to tackle those pesky bone mets. ASlso a recent liquid biopsy revealed an ESR1 mutation and someone on the Xeloda thread was on both faslodex and Xeloda. Has anyone tried faslodex and had that help with ESR1 mutated cancer after progressing on other hormonals?
0 -
I progressed on Ibrance/Letrozole/Faslodex and I have ESR1.... It only worked for me for 3 month...then stopped month 4
0 -
Hi Nicole, do you also happen to have P13K or FGFR1. Those tend to make CDK inhibitors stop working. What did you use next?
0 -
Ann I made a mistake I don't believe I have ESR1 its the FGFR1 that I have...The Xeloda is what I will be using next starting next Monday.. the I/L/Faslodex was my first line of treatment
Here is what I have...
My ERBB2 is without alterartions
3 Disease relevant genes with no reportable alterations: ERBB2, BRCA1, BRCA2
CCND1 amplification
FGFR1 amplification
FLT3 amplification
C11orf30 (EMSY) amplification
FGF19 amplification
FGF3 amplification
FGF4 amplification
GATA3 P409fs*99
IKBKE amplification
NSD3 (WHSC1L1) amplification
ZNF703 amplification
0 -
ah I see, thanks Nicole! Hope Xeloda works for you. It definitely knocked out all my mets but doesnt seem to have any effect on my bone mets unfortunately. Since you have BRCA 1 and 2, have you considered PARP inhibitors?
0 -
I am Braca Negative...not positive there were no reportable alterations...thats negative.
0 -
I see, sorry I didnt understand that correctly. I looked sat my foundation one report and saw the same for ERBB2 - disease relevant with no reportable alteration. Not sure what it means exactly.. I know ERBB2 and Her2 are related. Does having the gene possibly open up Her 2 treatments?
0 -
I know if you have the ERBB2 gene HER2+ treatments can work..but I don't know that I have that...I do not think I do I am going to ask my MO about that...Ill let you know what she says...
0 -
Shar, that seems like a rather low dose. Is it without a break? I did not go without SE's, I have them, they are just tolerable and not as bad as in the beginning.
Well, no more X for me. Time to move along. TM's jumping up too much and new mets on the bones and previous ones are worse. I had a good long run with X, more than normal. Wishing you all the same. Time for Verzenio/Faslodex/Xgeva.
Happy Thanksgiving all!
0 -
Goldie, sorry to hear that you have to switch treatments. Thank you for sharing all your experience on this thread.
I wish you every success with the new treatment plan.
0 -
Goldie, wow sorry you have to move on but you do sound so positive and appreciative of your long run...I pray we all get a run like that. Best wishes for success on your new line of treatment.
0 -
Goldie, may your new treat be even more successful than this one was!
One word of cautionary advice about Xgeva - get any dental work / cleaning done before staring to take it. The risk of developing Osteonecrosis of the Jaw (ONJ) is real, as I unfortunately know first-hand. Practice the very best dental hygiene and hopefully you won't need anything invasive done while on Xgeva.
All the best!
0 -
Thanks Katty, I have been on Xgeva for 4-5 years. I do take good care of my teeth, having had periodontal disease in the past. Mostly I have had just fillings and cleanings with no problems.
0 -
Sorry to hear you have to move on from Xeloda Goldie. Hope Verzenio works well for you and you have a long run on it as well!
Hugs,
Ann
0 -
Sorry that you have progression, Goldie! Please continue to post here so that we know how you are doing.
Any idea what your next tx will be?
Have a great Thanksgiving!
And also a great Thanksgiving to all of you sweet survivors!
0 -
Denny, tx will start when I get the drugs. However, I just got a call and I have to pay 5% for the Verzenio, which comes to over $600 a month. In January, I will be responsible for 20% which adds up to over $2400. How is someone supposed to get better??? How can they expect us to pay for these drugs.
0
