All about Xeloda
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BevJen, I was stage iv de novo and did taxotere and cytoxin chemo right off the bat in 2011. Then had lumpectomy, radiation and went on Arimidex which kept me stable for the next 7-8 years. In 2019, I had progression and went to Ibrance and Aromasin then Verzenio for a year. Neither Ibrance or Verzenio were effective. Now I’ve been on Xeloda for a year and it’s kept things from progressing.
May I say, looking at your signature line, I hadn’t realized you’ve been at this bc thing since 2003, and mbc since 2006! Girl, you is tough! My hat is off to you. I hope Xeloda, or Madame X, treats you well.
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Yay! I will start back on Xeloda tomorrow after a 7 week break because I was bad and ate salads! My onc wanted me to be off for 3 months, but I don't want to wait that long. His PA said that I can go back on it.
Instead of dark leafy greens, I am eating my own home-grown lettuce mixed with iceberg lettuce. So I will see how that goes. And now I know what is too high in Folic Acid and am trying to avoid that healthy stuff.
I will be on 1,500 a day at 7/7 for 2 cycles (1 month), then go back up to 2,000. My hands and feet actually look normal....for now.
That is a very low dose for my weight, but I will take it. (literally)
Denise
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Two things:
At some point along the way, my MO told me that the "standard procedure" for MO practice with a cancer drug was to start at the highest dosage and work downward, based on patient tolerance. Fortunately, my "second opinion" MO at MSK suggested that I start Xeloda (following progression on Ibrance/Faslodex) at 3000 mg, 7/7. We worked down, as I recall, from that to 2500 and then to 2000 mg/day and 7/7. HNF for sure, even at 2000/day, but tolerable for results. I'm currently on my 30th month.
Also, at my last MO meeting, I asked my doc what was the lowest dose of Xeloda she had used successfully with any patient. She considered my question and said that she has a colon-cancer patient now on 500 mg/day. He started at a normal dosage (whatever that would have been) but was stricken with bad HNF. They gradually worked down to 500, and he is at 5 years on Xeloda. She has suggested to him that they might go cold turkey and stop the Xeloda entirely, but he is happy to continue with his current dosage and understandably doesn't want to rock the boat when things are working.
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Great news, Denise....good luck!!!
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JoynerL- interesting. I can see why he wouldn't want to stop it.
3 of 5 rads done- hope it kills the resistant clone and I can stay on xeloda for 5 years also!
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Nkb, I hope so. I hope you are feeling good during rads. It’s just made me tired.
Denise, so glad you get to restart. Hope it goes well. Just eat unhealthy crap will you please? 🤪
Joyner, thank you so much for the uplifting story.
I met with my MO today and he is really open to flexible dosing. I’m going to start out at 4,000 for 7 days and 3,000, 7 days off. If I start feeling bad then I can just go to 3,000 a day earlier. So I’m glad and felt like he listened to me. If I need further adjustment then we will make it next visit. He still maintains that 4,000 a day is a low dose for me. I lost 5lbs. So I’m 5’4 and 125lb. I’m also starting Trazadone which is an anti-depressant and sleep aide
I hope everyone enjoys their weekend in the best possible way. ❤️
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Thanks Joyner!
This was my third break on Xeloda in as many years. But my previous breaks were only for 2 weeks, and this one was for 7 weeks.
I know know that it takes 6 weeks for my hands and feet to lose their burgundy color, although my feet are still very dry.
Another note: I went to my eye doctor today since I have been having some pressure in my eyes and mild pain. Turns out that I have acute Keratitus (damaged corneas)....from my Xeloda. I have to pry open my eyelids in the mornings.
Although I do use Restasis in the morning and evening, he prescribed a steroid, Prednisolone Acetate drops to be used 4 times a day to heal my corneas. I will see him in 2 weeks, but he hopes that these new drops will heal the damage and not to be used long-term.
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Txmom-thanks! But 4,000 is low??? I don't agree, but at least he might listen to you if you have problems.
I do eat crap! My sodium is low and I have been "forced" to eat potato chips daily. My PCP was worried about my sodium being so low for no reason so I self-medicated with potato chips and now I am close to the normal range. LOL.
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Denny, I have been having eye problems also and it is time for the eye doctor visit. I just thought it was dry eyes from X use. I will make sure to get them checked. Thanks for the nudge. This is my first cycle back on from a three-week break and I am doing about like I did before. I guess two weeks is not that long...
Txmom: About dosage: I am heavier than you all and was started on 3500mg. I was dropped to 2500 for SEs now and that is manageable and I am doing fine. I wouldn't hesitate to ask.
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I've been having some pretty bad eye problems too. The pharmacist recommended an over the counter ointment which is basically Vaseline with some extra stuff added to it. It helps a lot, less tears during the day but I still have problems opening my eyes in the morning. I guess it's time to consult an optometrist.
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I have been on X for 3 1/2 years and had eye exams every 6 months for many years...until Covid hit. My last exam was a year and a half ago and I was due for a check-up a year ago. But Covid was rampant here.
Of the 6 patients there yesterday, 2 didn't have masks on. I was double-masked.
My eyes have been dry for many years, and it is weird that although I have been on an X break for 7 weeks, that my eyes have gotten worse.
At the very least, we need Restasis.
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Hi . How is lizo doing ? Is she still on weekly taxol ?
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A glass of wine with Xeloda and Zofran?
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Dutchiris...when I was dx'd over 19 years ago, I researched alcohol and BC, although I don't drink alcohol. The ACS reported then that one glass of alcohol per day increases the likelihood of developing BC by 20%. And that info has never changed.
And this is a good current article....
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I have the occasional glass of wine or beer with no ill effects
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Ok. I usually have one drink on Christmas and one on Easter if I am not on call for work on one or both of those days. My sisters and I walk together on Sundays and this time are thinking about stopping for a glass of wine someplace. I don't have to have one but wasn't finding a conflict with the meds I mentioned. I have to laugh when questionnaires ask about drinking. There isn't an options to indicated 2-3 drinks per year.
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Dutchiris...I don't think that 3 glasses per year will hurt you! Although some ladies do get sick when they drink.
I am on BC Facebook groups and some of those ladies have a 2-3 drinks a day, which I think is ridiculous. They keep saying the familiar..."You only Iive once", which I find to be a poor excuse.
But that is just how I feel.
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With regards to drinking, I am a proponent of a balanced approach. While I would agree there are studies pointing to an increased risk of developing cancer as a result of alcohol consumption, I am not aware of any that indicate that it has an impact on the trajectory of the disease once we are diagnosed. I recall at one point a pharmacist at the Cancer Agency, when running through the side effects of one of my drugs, said "It's safe to drink alcohol with this drug... however, there is an increased risk of developing cancer if you drink!" My response - "Well... that ship has sailed..."
Dutchiris, the literature on Xeloda indicates that it is perfectly safe to consume small amounts of alcohol while taking it. I, for one, have continued to enjoy a glass of wine and have suffered no ill effects.
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Then there's this....
As for alcohol and hormones, drinking appears to increase the amount of estrogen in women's systems, and may also lower progesterone. This is not a bad thing in all respects, as estrogen has a number of important functions in the body. But there are downsides, and one of them is an increased risk of breast cancer.
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I'm not tolerating the regimen well that I've been on 2 months. MO plans to do CT next month to see if tumors shrunk. Mentioned she might put me back on X (previous MO had me on X). I tried it once @high dose and after 2 weeks had to stop. H/F took 6 weeks to recover. She said maybe this time start @low dose. Has anyone successfully gone back to X with success after bad H/F?
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Nopink2019- I don't know what your MO considers high dose or low dose- I had HFS on 2500 per day, went down to 2000 per day and it is mostly gone- I am also on 7/7 routine.
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7/7. Current MO is @ regional cancer Center &more experienced with MBC. I have more confidence in her judgement than 1st MO. I'll see what she recommends,but different dosing options give me hope I could try X again.0 -
Hello Xeloda friends. I have liver progression and will need new tx decision.
It is aggressive and liver only, so need to move fast. Two choices: (1) chemo ot (2) Y90 if a clinical trial allows recent radiation.
Thanks to all for the support while on Xeloda.
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SandiBeach, so sorry to hear of your progression. I will follow you closely as we are still unsure of what is going on in my own liver. For now I remain on X. I see my onc today...
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I'm so sorry to hear this SandiBeach. It doesn't look like Xeloda helped for long. I'm wondering if I might be in the same boat as well... liver pain increasing and generally not feeling great. I am waiting for CT results. Normally my MO lets me know right away but this time no... meet with him tomorrow.
Hoping your next treatment is able to get the liver under contro. Hugs. .
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SandiBeach --
Sorry to hear this. Hope you figure it out quickly, but I would opt for the Y90 if that's available to you.
I can't remember when you did the SBRT -- was that a lesion that was blasted away?
Just curious -- when did you last scan? And what was the size of the lesion then?
Good luck.
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Good luck ladies! Y90 sounds pretty good. I had numerous liver mets in 2004, and at that time RFA was considered. But my biggest tumor was the size of a baseball and thus, too big.
I statically had only a year to live, but had a liver resection (sections 7& 8), and then went on a "new" clinical trial of Gemzar & Herceptin. In 9 months my tumors were gone.
Since then, I have learned that so many chemos work very well on liver mets since the liver processes our chemos.
NoPink...I just got back onto X after a 7 week break and it also took 6 weeks for my HFS to clear up. I had 2 previous breaks of only 2 weeks, but I have been NED now for 3 1/2 years. I was only on 2,000 a day at 7/7. Now I will do 1,500 a day for a month, and then go back to 2,000.
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Andish - Thank you for checking on Liz!
Denny - I'm happy that the HFS has improved and you're back on treatment.
So I preface my update with the fact that Liz and I are both Christians and believe that God can perform miracles. I only say this briefly as I respect that this is a medical thread and I also believe in modern medicine. I'm also stating this as I really prefer to only post positive messages.
So Taxol was Liz's 4th line of treatment. She was only on it for about 3 months and there was progression so it was stopped. She is currently off any treatments (except for Zometa every 3 months) and there continues to be some visible progression on her head. There are also some skin lesions that are weeping fluid but other than the leaking they aren't causing too many issues. She is scheduled for some radiation treatments next week for her head as well as the lesions. The onc said he may have other options but Liz is pretty weak and has lost a considerable about of weight so the treatments may put her in the hospital.
I so wish that I had a positive update but we try our best to remain positive and continue to lean on our faith.
I continue to keep everyone her in my prayers!
Grant.
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Grant, thanks so much for the update on Liz. I will have both of you on my daily prayer list. I know how worried you must be. Sending hugs.
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Oh Grant, I aam sorry for her progression. She will be in my prayers!
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