All about Xeloda
Comments
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Amy,
Thank you so much for the quick response! My husband when to advocate for me when I had a melt-down. He said this is the best organization we have worked with since I was diagnosed. The president came on the phone with my husband -- said they had found the Mylan generic and would work to keep me on the Mylan as best as they could. President indicated that there is a shortage of brand specific generics (said, in fact, there is a shortage of Xeloda in general) and that I may not be able to stay with the same brand in the future. Sigh. There is so much going on with our treatments one just wants something to stay consistent!
You keep warm too! Minneapolis is an ice box today but at least it is sunny and minimal wind which makes getting out easier. Yesterday was just miserable!!
Kimberly
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Kimberly, the pharmacy you are working with sounds very helpful! It could be an issue of your insurance. Typically, insurance companies change yearly their list of preferred name brand and high end generics, based on drug price, drug company rebates received for the medication, etc.
I have been on the pink pills the whole time and they have worked for me.0 -
Hi JFL,
Thank you so much for your feedback. I am happy to hear you have done well on the pink generic. Do you know who your manufacturer is? My white pills were manufactured by Mylan. The new version of pills I received is manufactured by West-ward Pharmaceuticals. They just received their license to manufacture Xeloda in July of 2016. Would you mind sharing who manufactures your Xeloda as I see you have been taking it since March?
The only reason I am cautious is that I definitely did much better on letrozole with the Femara Brand rather than the letrozole generic. The Xeloda is working for me right now so I am loath to change anything!
Again, thank you for your feedback,
Kimberly
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I have had several types of xeloda over my 4 years. I have done fine on all of them. But keep a record so if you get a new SE you can trace it back to the change in pill. Sometimes the simplest thing like exterior coating can make a difference.
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Leftfoot,
I appreciate your sharing that you have been taking generic from multiple sources. I will try and focus on the good (right now it is working) and less on my fears! I am so inspired that you have been on this drug for four years! Wow.
Kimberly
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Kimberly, my prescription does not note the drug manufacturer but when I look at the pill IDs online, my current pills look like the Accor generic (pinkish/peachish with 500 imprinted on one side). However, I have also received pills in the past that looked like the Teva generic (pinkish/peachish with 191 on one side, 77 on the other).
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anyone have weird facial sensations while on this drug? I'm thinking I have some facial neuropathy from this drug. I notice it especially after I wake up from sleeping. Not a motor thing, it's a sensation issue.
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My xeloda has always been Mylan.
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I thought I was having a stroke this past weekend bc my facial muscles were behaving badly. Maybe the same thing you're experiencing leftfoot?
Amy
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I've been getting weird little twitchy things and neuropathies, too.
When I first had a Zometa infusion, the next day, the whole lower left side of my face went numb for hours.
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Well unfortunately I will be moving on from Xeloda. I have been on it for two months and I progressed in my liver while on the med. I never got hand and foot syndrome, but was nauseous the entire time. I had tried several anti nausea drugs that never worked. I had hopes that this would be a good drug for me, but that just wasn't the case.
Good luck to all of you!
Robin
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Oh Robin, so sorry to hear X didn't work for you. Hope you can find something else that works.
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soirs goodbye to xeloda for me also. After 6 months progression. Yuck. Have to say it was an easy tx for me and hand foot thing was not an issue for me. Good luck to talk. Hope it works for you for a long time.
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Patty, Robin, that stinks! I hope your next treatments go really well!
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Robin and Patty, Very sorry that Xeloda didn't offer you progression free time. Best wishes for a more effective treatment course. We will miss you on the Xeloda strand!
Love and Hope,
Kimberly
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Thanks Everyone! I have a liver biopsy tomorrow and hopefully can direct a better suited therapy! May all you have years on Xeloda!
Best,
Robin
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Robin,
Best of luck with finding your next treatment. My wife is just starting Xeloda and at some point in future she will probably need to move on too. If you can share, I will be most interested to know about your biopsy results and about your next treatment pln
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Thanks Letmywife, I will update here in the coming weeks when we get the plan. I am meeting with the head of clinical trials at Sarah Cannon in Nashville to see what other options I may have. I am not ready for IV chemo!!
Robin
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tm doubled to 1100, yet I am still on X. Qol not too bad, MO is not rushing to moving on to Navelbine.
Well, fine by me
I am happy to have my hair and having pill chemo 0 -
Ladies & gents
I may start Xeloda if they cant find a clinical trial. It would be xeloda only. onc doesn't believe in combos. Can you tell me what to expect if its Xeloda. Thanks
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AmyQ
I'd love to be 11 yrs on anything. May start Xeloda next waiting to see.
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left foot forward
Wow what a wonderful outcome! I should be so lucky.
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I will be joining the Xeloda club in a couple of weeks. I have failed 3 treatments in 3 years, so hoping this is a good one for me!
I will be in a clinical trial comparing different dosages side effects and efficacy.
I've been reading this board, and I had my consultation about se effects today. So, hope I'm ready!
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Kaption, what are the different doses they are comparing? Very interesting.
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The test group is 1500 mg taken twice a day for 7 days followed by 7 off. (I know from reading on here, some people are already 7/7 people- but maybe this is a different amount??)
The control is 1259 milligrams per meter squared (not sure what that means) taken twice a day for 14 days, then not taken for 7.
How do these compare with what people here are taking now?
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I'm taking 4 500 mg pills twice a day for 14 days with 7 days off, so a total of 4,000 mg a day. My hands and feet feel like I'm walking on hot coals - my face and mouth have sores which have erupted all over and I have an overall feeling of helplessness. I'm discussing with my husband and soon my onc the possibility of discontinuing all treatments and letting nature takes it course. I realize this is close to a maximum dose and that there are other options that can be tweaked but in the end, I'm fighting a losing battle. That's the reality. I have Stage IV breast cancer which has spread to my bones (extensive spread) and now two small spots on my liver. For now I've only discussed this with my husband and will leave my adult children out of my decision until I need to share it with them.
Anyway, Xeloda for me had been tough and I'm not sure worth it. We will see...
Amy
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Oh, Amy, that is so awful. I can feel your exhaustion! Maybe your MO will talk to you about reducing the dose or doing the 7/7. Are the liver mets new since starting x?
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Hello, Amy
I, too, started off at 3800mg a day and experienced a lot of side effects, such as the mouth sores, etc. I am now reduced to 3000mg, 14 on and 7 off. The side effects are minimal. The lower dosage does make a great difference. You may feel better on a lower dosage while keeping your mets stable. Just a thought.
Stay strong, stay healthy. Blessings
Diane
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Amy, that sounds awful! You are on quite a high dose. May be worth trying to lower it before abandoning X. Studies so far haven't found a difference in efficacy. I recently lowered from 3000mg/day 14 on, 7 off to a 7 on, 7 off schedule. It has only been a few weeks but I am already feeling an ease up in side effects. You may have many, many more years ahead of you. Liver mets are not an immediate death sentence, even for those of us with extensive mets. Some live for 10 years or more. And who knows, there may be major advancements in immunotherapy in the next few years leading to long-term remission or a cure for some. Of course, you should do what you want to do in the end. It is your life, after all
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Amy Q: I was also on 2000mg twice daily for approximately 7 months...right in time for the holidays the HFS got unbearable so my ONC lowered my dose to 1500mg twice daily 14 on/7 off and sent me to a dermatologist who started me on a steroid cream and a non prescription product called Theraplex ( an excellent moisturizer). It really has made a world of difference !
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