All about Xeloda
Comments
-
Xeloda is doable, and SE's more annoying than anything. Anyone having sensitivity in their eyes. The sun bothers mine and sometimes just sitting in the house, they burn and water. I don't have a TJ near me, I will have to look online for the lotion. Good luck to those getting scans. Been a while since I had mine, will be doing them probably in December. No pain yet from the mets, grateful for that!
0 -
Sandilee, thank you for that info on the skin cream - luckily I have a TJ's near me, so I will get the lotion ready. Good luck on your scans, I am praying for good news for you and Stefajoy on Thurs.
Lynn1, hope they can do something for you to prevent it from worsening. I again wonder whey they don't just do one week on, one off, if it is just as effective with less SE's.
Seems like a very wide range of side effects for Xeloda depending on the schedule, dosage, age, etc.. I do have very sensitive (dry) eyes so I hope it doesn't worsen that problem in addition to the other potential SE's. Hopefully my onc will put me on a reasonable dose/schedule that I can handle, but I think he was talking about 2 weeks on, 1 week off, at least to begin with, so that might be tough. I will hopefully get more info on Wednesday's appointment.
0 -
So I went on Amazon to buy some Udder Cream, to prepare myself, and I see multiple types... Balms, creams , lotions, moisturizer. Tubes and tubs. All the same? Any one better than the other?
I will also get the butter balm at TJs and try that, as well.
Thanks!
Stefanie
0 -
My onc's office gives out complimentary Udder Cream in a tube for those on Xeloda. It was nice to be able to try it, as our CVS charges nearly $10 for a tube. It was ok, but I found the Coconut Body Butter to be more healing.
Good luck on your scan, tomorrow, Stef. I'm crossing my fingers for both of us.
0 -
Back when Xeloda was still sold only as the brand name drug (not yet a generic), I was given a starter kit by the cancer center pharmacy when I bought Xeloda the first time. It consisted of a zipped cloth bag much like a large cosmetic bag containing a plastic 7-day pill box, a booklet about Xeloda with a co-pay assistance card inside and a sample tube of Udderly Smooth.
My mother was previously on Xeloda for stomach cancer and she received the exact same starter kit from a different cancer center.
The makers of Udderly Smooth obviously struck a deal with Xeloda's manufacturer to supply their brand of body lotion in these kits. It wasn't because Udderly Smooth was the best for hand/foot syndrome.
I found Udderly Smooth to be nothing special.
I still use the pill box. I made use of the co-pay assistance card (the program was cancelled shortly after the generic became available). The zippered bag was made of a scuba suit type material and had XELODA emblazoned on the outside so I never used it and finally tossed it.
Kessala
0 -
scan day for me tomorrow. So today is filled with the normal scanxiety that is attached. first one since my liver resection surgery in July.
Wishing you all the best and hope you all who were scanned recently got good results
0 -
Good luck on your scan LeftFoot. Hoping you don't have to wait too long for those results and praying they are good ones. I will get mine in December, have some traveling coming up, 3 trips ending mid November. Utah, camping. Michigan, to see my family. Tennessee to see husbands mother.
0 -
good luck Leftfoot, my thoughts are with you. I hope and pray that you get excellent results. xxxxx
0 -
Good luck, left foot, with your scans. I hope scans went well for Sandilee and Stef as well. Praying for some good news for all of you.
I picked up some of the TJ's coconut body butter to prepare for when the Xeloda arrives. It does seem to absorb well, but pew, it really does stink, I don't think I could get used to that smell! I like TJ's shea butter hand cream which comes in a yellow tube and is odorless - I wonder if the odorless shea butter would work as well as the coconut butter? TJ's also has a thick sort of waxy whitish balm in a small round flat container which the doc said might be OK before the HFS but could make it worse once it comes out (has anyone tried this)? I also like TJ's A midsummer night's cream Moisterizing Cream (extra dry formula) unscented - it says it's ph balanced and is an herbal blend with aloe. I hope to find something that works and is unscented since I am very sensitive to smells (plus my skin can be allergic to scented lotions).
0 -
leftfoot and Sandilee , how were your scans? I know it is early to get results. Surprisingly I got mine very quickly. STABLE ! Yay!! Only now my ONC is rethinking taking me off of Ibrance and starting Xeloda.. Again. So next week I'm going to get an MRI, as well. He wants all the info he can get before he decides. In the meantime,I get a med vacation.
Please let us know as soon as you hear anything.
Stefanie0 -
Sorry that the coconut creme is too strong for you, Holly. It's not that unpleasant to me, but I can see how it might be. I did try the white balm you're talking about and found it too greasy for my tastes. It also wasn't healing my cracked skin.
0 -
Stefajoy, that's great news! Stable is great. You are lucky to find out so soon. I have to wait a day or so to get the report from the diagnostic center. I hope your MRI shows that you really haven't progressed. Where are your mets, Stef. Bones?
0 -
Stephajoy, Congrats on stable scans, great news! Stable sounds good, maybe you can stay on the Ibrance a while longer. I have an MRI on Monday as well, might have another spine fracture.
Hope Sandilee gets good news as well.
0 -
yes Sandi, bone only. Cervical and lumbar spine.
0 -
Stef, congrats on being stable! I guess that's all we can hope for, right? Still waiting for TJ's cream to arrive.
0 -
Stef, that is wonderful news to hear indeed. Stable is good. I love hearing the good news. xxxxx
0 -
Well, I got my TJ cream. I have to say I'm not impressed. Just 10 minutes after applying it, the cracks and dry skin appeared. I like the cream, and I will use it, but for my hands I will continue to use the bag balm, and my Jergen's with shea butter. It is a bit thicker and does leave you a little greasy, but I'll take what works the best for me. Occasionally I'll use my organic coconut oil, but that is really greasy. Considering getting rubber gloves that don't have powder in them, if there is such a thing.
I'll willing to try anything! Especially when it's that cheap.
0 -
To all those who are using creams: these are emollients that are supposed to decrease the friction between the foot/hand and its environment, thereby decreasing damage to the skin. They are not products that are formulated to repair the skin.
If your Doctor or your Dermatologist say otherwise, it means they do not understand the problem. Again, HFS is caused by the chemo leaching from the capillaries into the surrounding tissue, thereby decreasing the lifespan of the cell in that area. Anything you can do to be gentle with that portion of your skin will help, but nothing can reverse it. To compound the damage to the skin, excess damage causes your immune system to rush to the area to clean it of dead cells, causing inflammation and rashes. So, keep your feet elevated, decrease your walking or working with your hands, use protective socks etc.
0 -
Thanks Giovanni, I knew it wasn't reversible. I do a lot of computer work, so not as bad on my feet. Hands, not so much. But keeping lotion on them (for me) helps for when you need to open the hand, causing the cracking to get bigger or hurt. I think that is all we can do. Also, here in AZ it is VERY dry! I have not had anyone say to me, that it can be cured. I try to look at as there could be worse things. And I know those will come in time!!!
I see your wife did Ibrance before the Xeloda, but for a short time. Did it give her problems, or just didn't work? Ibrance will be next for me. I also did Faslodex, that was SOOOOO easy, but it wasn't working for me.
Have a great weekend all!
0 -
Hi everyone, I am anxiously awaiting the Xeloda pills, but still questioning the treatment decision given gciriani's post. So if I understand the post, it sounds like I should NOT be searching for a HEALING cream and should instead be searching for some type of CREAM THAT DECREASES FRICTION, since there is no way to heal HFS, just creams that slow it from worsening? So once I get HFS ( which is extremely likely), even if I stop the medicine, the HFS will never go away, making it painful to walk and use my hands, is this correct?
Also, as there is no way to prevent HFS (correct?), it sounds like the only way to slow it from getting worse is to avoid walking and using your hands (so essentially avoid doing anything), and hopefully finding some decent gloves and a cream that will be a friction barrier, is this correct? I try to take a good walk every day, should I plan on ending that, given that it worsens the friction and therefore the HFS?
I realize I have few choices, but this information saying HFS cannot be repaired makes me think I may have made a mistake choosing the Xeloda (it has been ordered for me and I am scheduled to start it as soon as it arrives). Maybe I should have chosen the taxol instead, or chosen nothing given the stage I'm at, I am still questioning???? I survived the taxol once with the adriamycin/cytosin back in 2008 and could still walk and use my hands, and had no GI issues.
0 -
Holly, pretty much everything you say is correct. I would think once you are done with Xeloda, the hands and feet would start to heal. I would give X a chance, you can always go off of it and on to something else. As long as we still have choices to keep the cancer at bay or slow it down. What kind of dose are you getting? My onc said I could do infused chemo, but it would be weekly, and his office is a 4 hour drive, one way.
0 -
Goldie and gciriani, so you are saying that HFS IS reversible, but not until you stop the Xeloda completely?
Goldie, I am scheduled for 3500 mg, twice a day (4 pills early in day, then 3 pills later on). I am scheduled to be on the 2 week on, one week off schedule, but he will make adjustments if necessary. Wow, a 4 hour drive would be very difficult, what a shame they can't bring it closer to you.
0 -
I realize everyone's experience is different, but I have been able to reduce my HFS without going off the drug. My onc took me from 3000 daily to 2500 (5 pills instead of 6 per day), which, combined with my coconut creme that works for me, did reduce the HFS significantly. I have no trouble walking anymore (but I did the second cycle) and while my feet do peel, they really don't hurt now. And my hands have healed completely. While the cremes can't stop the HFS from appearing, as it comes from the inside, some cremes and ointments can heal broken skin. My suggestion is to look for something that has helped heal chapped skin for you in the past. The drop in dosage was also very helpful.My onc doesn't feel that there is any problem with the small dose reduction as far as efficacy. I'm on the two week on one week off protocol.
3Holly, 3500 daily sounds like a lot to me. Would you consider asking your onc to start you on 3000 and see how you do, to increase it if all is ok? Sometimes starting at too high a dose can lead to problems that are harder to reverse.
0 -
Holly. my first cycle was 7 pills, I did my 2 weeks and was horribly sick, told my onc I'm not doing this. I had explosive diarrhea (sorry if tmi), terrible cramping, could hardly eat, got a horrible rash on my face and chest, lip sores and slept a lot. He dropped me down to 4 pills and now I am on 5. Kind of afraid to do 6, but he lets me make the choice. I would say if it starts to be hard on you to reduce the dose yourself, but let your doctor know.
Sandilee, I'm not sure if HFS will go away when you quit X, as I am still on it! But it only makes sense to me that it would. I'm glad you were able to get your HFS under control, I hope it stays that way. It is cumulative and I've been on X for 9 months. As long as I keep lotioning, it helps a lot!
They do have cancer treatment where I live, which is a very small community. But I have had too many bad experiences with medical where I live, so I will not go to them. If it does come down to chemo IV I will see if I can just do the treatment here, but still see my onc. I don't know!
0 -
Goldie and Sandilee, thank you for your good advice. The reason for my high dosage is that (lucky me) I am nearly 5 ft 11 inches and they go by your size unfortunately. However, I am sensitive to meds and do have allergies, so I am very nervous about the dose and schedule and SE's. I saw this 2007 conversation on "ask the expert" - I wonder what the results of these tests at the various sites have been, they must have some results since 2007. Here is the conversation I cut and pasted:
New treatment schedule for Xeloda?
- Question fromJoan: I've been on Xeloda for a year now and it is working, but the side effects are somewhat debilitating — hand-foot syndrome. What do you consider to be a good schedule for the drug — 7 days on, 7 days off at a higher dose? I understand that this is a new protocol.
- Answers -Larry Norton, M.D. Yes, that's a treatment that we've developed at Memorial Sloan-Kettering. The conventional schedule for Xeloda (chemical name: capecitabine) is 14 days on and 7 days off. However, by analyzing lab experiments, we have determined that most of the cancer killing activity of the drug is in the first 7 days of exposure. Hence we have explored 7 days on and 7 days off instead of 14 days on and 7 days off. This allows a higher dose to be administered safely, and seems to remarkably reduce the incidence of hand-foot syndrome. Currently this regimen is being tested in various settings; however, because of the reduction in toxicity many oncologists are already using the 7 on/7 off schedule as their preferred method of administration. The important thing is to stay away from the drug until the hand-foot heals completely. You can go to other anti-cancer medications for weeks or months until the hand-foot syndrome heals, and then go back to the Xeloda with the new schedule and get anti-cancer activity with reduced side effects.
0 -
Holly, there are some here that do the 7/7 schedule, and I will be asking my onc about that. Do give it a try, and if it's to unbearable, stop or reduce your dose. I have began taking Benedryl for the rash, suggestion from one of the gals here (megc) and it has helped tremendously!
I am 5'9", 155 lbs, so not much different than you, hence the 7 pills to start with! And like I said, been on it for 9 months. I am a freckled Irish girl with sensitive skin, so I can relate!
0 -
3Holly,
Thanks for quoting the doctor's answer, that's extremely interesting and helpful.
Sixteen months ago my wife was involuntarily off X for full three weeks (from 7/7 cycle 3000 mg), due to a botched shipment, and her HFS healed completely. She then resumed with a reduced 2000-mg dosage of generic capecitabine. She lost also 30 lbs in the meantime (165 to 128, for 5'7"), thanks to a diet (90% macrobiotic). The oncologist says capecitabine works in proportion to weight rather than height, so her weight loss was equivalent to a dosage increase. Last July her bone and lung metastases showed a growth spurt, so the oncologist increased dosage to 3000 mg. Unfortunately HFS has become intolerable (even with uridine help, search posts for this word to see what it is), She's decreasing to 2500 mg, and probably taking two weeks off.
The suggestion to temporarily go on another drug for a while is very helpful, thanks again.
0 -
Gciriani, sorry to hear your wife is suffering from HFS, I hope the break gets rid of it. She has been amazing to stay on Xeloda for so long - sounds like most quit the drug earlier due to HFS. Good to know that at least there can be healing of HFS by stopping the medicine. I will ask my doctor about this testing of the schedule of one week on, one off - Given that they started testing it in 2007, they must have some results by now. I think getting the dosage and schedule right is the trick and must be difficult, especially when someone has lost a lot of weight.
Goldie, I am of similar weight - 154 pounds - and Irish with freckles just like you, so I hope I don't have same side effects to yours at the same 3500 dosage and same schedule you initially started with. I am going to ask for another opinion on the 3500 dosage and the 14 days on/7 days off versus 7 on/7 off schedule before I begin Xeloda, which may be as soon as tomorrow if it arrives today. In the meantime, I have benedryl lined up, and ammodium, and he is prescribing Zofran to take if needed, and I will look for uridine cream. I buy those boxes of non-latex disposal gloves (can get them at Home Depot or Ocean State Job Lot), they come in different sizes), so I will stock up on those as well.
0 -
I'm reading with interest everyone's dosage, schedule and side effects. I'll pipe in with mine: I take 2000 mg a day (2 pills morning, 2 night), have just finished my first 14 days and have no side effects so far. My oncologist said that if I didn't have diarrhea by now, I shouldn't have it in the future. HFS hasn't shown up at all. Knock on wood.
The onc also said that I could go to a 7 days on/7 days off schedule if I wanted to. She said that there have been studies that show low dosages (which I'm on, I guess) are just as effective as higher dosages. Believe me, I am not thin, so that's not the reason for the lower dosage.
Of course, I don't know who well, or even if, X is working. Should have a scan in December.
0 -
Picked up my scan report today so I could see it before my onc visit tomorrow. Stable! My liver mets were slightly reduced--the biggest from a 2.3cm to 2.0. At least it's in the right direction! This was my very first report after my initial 3 months of Xeloda. I was kind of hoping for more reduction, but I probably shouldn't complain. At least it seems to be working, if not slowly. I had a feeling the news would be good, as I'm just feeling better, generally. Also, my last CEA showed a small decrease, as well. Let's keep it coming!
0
