All about Xeloda
Comments
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grahaad1,
That does sound like a high dosage. I'm on 3 500mg pills twice a day. 14 days on/7 days on and I'm going to ask for a dosage reduction when I seem my MO tomorrow. They do dosing by body weight but I heard that approach is controversial. There are a few studies that say lower doses are just as effective. One showed that 1000mgs twice a day was as effective as the current recommended body weight dosages. There is another saying that using biological modeling, the optimal cycle should be 7 days on/7 days off. This hasn't been tested in a clinical setting yet.
- Susan
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Susan - I am on the same dosage and schedule that you're on. I just finished my first cycle, and so far no real problems. It appears from your signature that you have been on the drug since October. Have you received any results yet? How has it affected you, overall?
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I wanted to report to the group that capecitabine (the generic name for Xeloda) is covered by Medicare part B, which means not additional coverage is needed. This is good news, because various insurance companies couldn't give me a straight answer, or told me that under their Medicare supplemental plans they wouldn't cover for the drug, or that I would have to ask for an exception (letter by the doctor to the insurance company).
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hi. Feeling depressed as went today for next lot of xeloda and markers had still gone up . They don't seem too worried and say they want to see 3 or 4 cycles before they know if it's working. I have done 2 cycles. Barbar
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Barb, don't get discouraged. If you've only completed two cycles of Xeloda that means you've only actually taken the drug for 28 days. WAY too early to tell if it will work for you.
When I started taking Xeloda we waited four months before scanning me to see if Xeloda helped. And it did!!! And I've been taking it for two years!
I wish you the same good luck with Xeloda that I'm having.
Kessala
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could you post the recipe for the uridine cream again , pls. thank you
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Kessala-
Great to hear about your success on the drug. Did it reduce your liver mets? How long before results showed up in your tumor markers, if that's applicable.
I'm finding that the drug does darken my skin a bit, but so far that's the only real SE I have with it. Crossing fingers.
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Hi Sandi,
Xeloda eliminated my multiple liver mets! Four months after starting Xeloda I had a PET/CT scan which showed that my liver mets were gone. One year later a second PET/CT scan showed my liver still clean of mets.
Tumor markers don't work for me. I've had about three tumor marker tests done since my Stage IV diagnosis and they all showed me as being in the normal range. This was during a time when scans were showing multiple areas of cancer in my body. We no longer bother doing tumor marker tests.
I've also noticed the skin darkening (looks like new freckles and age spots on my face and my hands). My worst side effect is hand/foot syndrome.
Kessala
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Kessala- Yes, the age spots and freckles on my face! I have that, too. I don't have the hand/foot syndrome yet, knock on wood. That sounds uncomfortable, especially since I like to walk.
I'm really happy for you about your liver mets!! I hope I am as fortunate.
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I have not been here for a while.
I did want to mention that Medicare B does cover the Xeloda. Mine costs $3100 for each RX. Between the Medicare and my supplementary insurance, I do not pay anything. I am so grateful for that. I take (3) 500 mg. twice a day. I started the first part of March, and I had a PET scan in June and the liver mets had not changed. I had a CT scan and a Bone scan 2 weeks ago, and I see the doctor this Thursday. I am hoping that there will have been a change in the liver mets. My tumor markers had been going up a little bit each time, but the doctor did explain that isn't too unusual. The tumors breaking up can cause the numbers to go up. So, I am hoping that I will get a little good news this week. The h/f syndrome is getting worse. Not unbearable, but just annoying. Not as tired as I used to be, but don't have a lot of ambition.
Kessala, so happy that you are still doing well. That is good news.
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Thanks Joy for confirming that. Your cost (before Medicare) also confirms that the brand name RX is about 50% than the generic: my cost before insurance is about $2,000 with the generic (by Mylan), same dosage. May I ask you what supplemental insurance you buy, and the premium? I'll contact you with a private message if you prefer not to answer here.
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sandilee,
The Xeloda does seem to be working. As you noticed, I've been on it since last October and on my last scan, nothing was lighting up. Still have a couple of tumors but they have shrunk pretty dramatically and don't seem to be active. My HFS has been pretty bad so I'm switching to a 7/7 schedule at the same 1500mg twice a day dosage. My MO also said I could take off more than a week until my HFS goes away. I would normally start up again tomorrow but will wait perhaps another week. We'll see how quickly my hands and feet recover.
vision1,
For the uridine cream, I had been mixing 45 grams of Cetaphyl cream with 5 grams (20 250mg capsules) of uridine (http://amzn.com/B00C43H89C). Today, I decided to make a bigger batch and did 90 grams of Cetaphyl cream with 10 grams of uridine powder (http://amzn.com/B00VXM6MFG). I use a kitchen scale and keep the mixture in a small tupperware container. Super easy to make and it helps (Thanks again Giovanni!). The nurse also suggested soaking your hands and feet in cool water for 10 minutes twice a day. I haven't been doing that because it's just too boring to sit there for that long. I also switched hand soaps to use Cetaphyl cleanser which is very mild. I make sure to moisturize each time I wash my hands.
Hopefully all these things will help me stay on Xeloda!
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That's really good to hear, Susan. I hope it works for you for a long time.
So far, no HFS, but I guess it's just a matter of time. I'm only on my second cycle.
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Giovanni, I would rather not post that information on here, but you are welcomed to contact me in a private message.
Joy
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Ok, so I spoke too soon! My feet are really sore! Almost overnight I guess the HFS came to the bottom of my feet. Walking is a bit challenging. I'll be looking back on this thread and online to see if anything helps.
Thanks, susan, for posting your uridine cream recipe. I'll order the ingredients and try it out.
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Has anyone tried Bag Balm for HFS?
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Keep in mind that bag balm and all other ointments are only palliatives that help decrease the friction to your feet and hands. Friction is what accelerates the death of the soft-tissue cells in your hands and feet. So whatever you can do to decrease that friction will help.
However, if you can find something that slows down the time for the cells to die, that would have a much more more beneficial impact on your feet. I bumped into this study
Hartinger J, Veselý P, Matoušková E, Argalacsová S, Petruželka L, Netíková I. Local treatment of hand-foot syndrome with uridine/thymidine: in vitro appraisal on a human keratinocyte cell line HaCaT. ScientificWorldJournal. 2012.
After reading it I started preparing and using it, with much better results than going to the dermatologist.
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Personally, I found that these heavy lanolin-based balms were helpful in the beginning because they create a waterproof barrier that protected my hands from the harshness of hand soaps. However, as my hands became worse and they actually had open wounds due to cracking skin, these heavy balms impeded healing of the wounds. Some people are also allergic to Lanolin which comes from the sebaceous glands of Sheep. I now use Uridine cream twice a day and in between use Cetaphyl or Cerave creams. Cetaphil has a new Intensive Moisturizing Cream with Shea Butter that comes in a tube that I carry in my purse. I like it because it is intensely moisturing but not greasy. It feel like these lighter creams actually get absorbed by my skin as opposed to sitting on top of it like a protective greasy barrier.
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Thanks susan and gciriani. This is very helpful. My hands just started to get red and sore yesterday.
I now have a week off. I hope some healing happens.
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Susan, thank you for telling us about Cetaphil Intensive Moisturizing Cream with Shea Butter. I have purchased so many balms, ointments, crèmes and lotions for skin I could rival Walmart's inventory! I will look for this new Cetaphil product next time we're shopping.
I have bad hand/foot syndrome and find while no product prevents or heals my skin it helps in some small way to keep the cruddy skin moisturized. I notice after a few days of using one product it doesn't seem to help as much so I do a lot of switching out of skin crèmes.
My hand/foot syndrome is currently bad enough that I'm taking a second Off week from Xeloda. These second Off weeks are coming more and more often as the skin damage is cumulative.
I have red, burning skin on hands and feet that crack and bleed. I have to walk flat-footed like a duck when my feet are in such bad shape. My hands hurt so that I can't braid my hair, write with a pen or open a jug of milk. Oncologist doesn't want me to go to a 7/7 Xeloda schedule but suggested I take a second Off week when I need to.
As much as I complain about this Xeloda side effect the medication is working on my liver mets. I also know if Oncologist takes me off Xeloda my next step would be I.V. chemo and I'm terrified of progressing to that.
I'll just downplay my cruddy skin and keep on keeping on. It's all we Stage IV people can do anyway, right?
Kessala
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Kessala,
I also took an extra week off the last two cycles. Started up this morning but will be going on a 7/7 schedule for the first time. My MO said I could stay off until my hands and feet healed but I don't want to be off more than two weeks. My hands and feet are definitely better after two weeks off but nowhere near completely healed.
I'm with you. HFS is a drag but IV chemo is definitely harder so I want to stay on Xeloda as long as I can. Love the freedom of being able to take my pills with me.
Hugs, Susan
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susan and others- Have you found that the HFS gets progressively worse with each cycle, or does it stay the same? I can sort of tolerate it now, but it's hard to imagine how it will be if my feet become even more sore. As it is I kind of hobble around sometimes. But other times of day it seems ok. Strange.
Only my right hand is bad. My left seems ok for now. Can I assume this will stay this way, or will the left get bad too after awhile?
Also, my face is darker and freckled now. Big new spots on my nose, eyelid and forehead. Not pretty, but the foot thing bothers me more.
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Sandilee, I've been taking Xeloda for just over two years. I've noticed an accumulative effect on the hand/foot syndrome. A one week break from Xeloda seems as if it would give you time to heal but it does not. At this point I'm taking TWO week breaks as needed due to the hand and foot side effects. Even the two week long breaks don't eliminate the burning or the redness but the pain does get a little less intense.
Both my hands and both my feet are equally painful and red and cracked. I actually use Super Glue to seal up the bleeding heel cracks. Super Glue also stops the pain from the foot cracks opening up when I put weight on my feet.
I, too, have new brown spots on my face since taking Xeloda. I have a new brown freckle on the tip of my nose and many more scattered across my forehead and my upper lip. I even have two new freckles inside my mouth! My dentist noticed them and remarked about them. I told him it's from Xeloda.
Xeloda worked on my liver mets. I appreciate it being in tablet form vs. going to the clinic for an I.V. I LOVE that I have my hair. I'm hoping taking longer breaks between Xeloda cycles helps to ease some of the side effects.
Kessala
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Thanks, Kessala. I know that these side effects are better than what I would probably have with IV chemo, and if Xeloda works, I'll just deal with them. I can't believe you are using super glue! That tells me just how bad the cracking must be. So sorry.
Kessala or susan--Has your oncologist ever discussed putting you back on one of the hormonals now that your liver mets are stable?
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Sandilee, I also use Super Glue on cracks on my hands from Xeloda. My skin breaks open as I move my fingers and I'm left with stinging red openings that feel like knife cuts. Nothing helps stop the pain better for me than dabbing Super Glue on the cracks. Let the glue dry, don't touch anything while the glue is drying or you'll get stuck to whatever you touch, and once dry the crack is temporarily closed. The glue wears off within a day or two of hand washing, showering, etc. but it's certainly better than trying to live with multiple open wounds on my hands and feet.
I would LOVE to return to hormonals! I have a new oncologist (previous one left the practice recently) who I'm just getting to know. Since Xeloda has kept my liver tumor-free since my December, 2013 PET/CT scan I'm planning on asking about the possibility of taking a break from Xeloda and taking a hormonal for a while. I was only on Faslodex four months during the time my liver mets were new and my previous oncologist panicked and took me off it. She was afraid to waste any more time with Faslodex. I feel Faslodex never got a fair chance to help me and would love trying it again. Although the weird-o butt shots were never a favorite of mine. Who thinks of these things? Let's make Faslodex a thick gooey injection that has to be given in the rump ON BOTH SIDES yet?
Kessala
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Kessela- I had a great 3 1/2 year run with Faslodex. If you could do that for awhile now that you're stable, who knows? It might work for you, too. Even a year or so would be a great break from chemo.
My onc has suggested that I go back to hormonals once my liver mets are stable. That would be great, but I want to get them stable- or even gone- first before I get too excited about that possibility. It is pretty scary when they are doubling in size in three months. But I would try it if he thinks it might work. I'm glad he's optimistic, though and doesn't think I have few options.
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I have been following this thread recently, and feel so badly about the HFS issues. My dose was reduced about a month after I began taking X, from 3500 mg a day to 2000 mg. That was last fall. I had had HFS completely take me off my feet, and did not want to live like that. I now have no HFS beyond dry, leathery skin on feet. It responds to Healthy Feet cream when I remember to use it. No pain, however. This month my onc switched me to one week on, one week off, to address episodes of fatigue. I just started that pattern this month, and so far am feeling much more normal. Actually cleaned the bedroom yesterday and continued the project today, with motivation to make a peaceful uncluttered space.
I had a bone scan before this weekend, so am awaiting results now. I have had some bone pain in my mid-back, and on the top of the pelvis on one side. Hopefully it will turn out to be arthritis, which at 64 is pretty common. If it indicates progression of mets, I am not sure what step to take. I totally agree with you all about how much better the Xeloda is than IV chemo.
Anyway, I am wishing you all the best as the weeks go on. I am starting to plan for the things I want to do next summer, but am aware that things could be quite different by then. I think I am going to plan anyway, and hope for the best. Big hugs, Mame
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Thanks for your comments, Mame. Interesting that lowering your dose made such a difference! If my HFS gets much worse I may ask about that. I currently take 3000 mgs for 14 days, 7 days off. Lowering the dose might be an option as a maintenance strategy if it looks like this drug is going to work for me. As hopeful as my onc is about going back to hormonals, I'm skeptical. But I'd gladly stay on Xeloda if my hands and feet could be fairly pain free.
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Sandilee, Here's hoping your team will keep experimenting with dosage to get you more comfortable.
I just got my scan results back, am stunned to see that there is reduction to NED in all bone areas. What a positive way to start my day! I changed my life a lot when I was diagnosed, and I have much less stress in daily life now. I get more exercise and eat better, all of which might have also influenced my body chemistry. I walk a couple of hilly miles most days, and choose slightly more nutritious foods. Its possible that the five months on Taxol did most of the heavy lifting , who knows. I'll take it. Xeloda is my best friend now.
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yay MameMe. Xeloda has done wonders for me. Hope you stay NED for a long time
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