All about Xeloda
Comments
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MameME what wonderful results!!! I'm so happy for you.
And great to hear that Xeloda has been good for you, too, leftfoot. I'm on the week off of my second cycle, and my feet feel a bit better today. I start the pills again on Monday, so maybe it will be enough time to improve. What I'm really eager for is my scan in October. Just going in the right direction would be great.
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Hello-
I'm not on xeloda yet but the doctor wants me to think about it as an option. I am concerned about the hand foot syndrome. I'm wondering how often this effects people and how bad it is. I am training for the NYC marathon and this side effect would really effect my ability to run it seems.
Generally, how do you all like xeloda? I have to choose between that and examethasane (sp?) and affinator.
Thanks so much,
Renee
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Hi Renee!
I'm on cycle 11 (2 weeks on/ 1 week off) of Xeloda and it's really been no problem. My hands and feet are red but very rarely sore. Your marathon training may cause much more friction on your feet and exacerbate HFS on your feet. I was on Affinitor/Aromasin for a few months and definitely have fewer side effects with the Xeloda. No matter what you decide, good luck on the marathon! I did it years ago and was a great experience!
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Fantastic news MameMe!
sandilee,
My HFS definitely got worse over time. The last two cycles I took 2 weeks off between my 2 weeks on. I'm back on this week but am switching to a 7/7 cycle from now on. My MO told me to stay off until my HFS got better but I didn't want to take more than 2 weeks off. My HFS is tolerable at this point, not normal, but tolerable. I take 1500 mgs twice a day, 3000 mgs total per day.
My MO told me that once Xeloda stops working she will put me on Palbo + AI. I have a scan next month. Am a bit worried because I've been having slight headaches for the last week. Hoping it's just the heat...
Hugs, Susan
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Rseman- I have been on Xeloda since Dec of 2012. I had to do one dosage decrease and have managed ever since. I have enlisted a podiatrist to help me when my big toes get really bad, but ever since I saw him, my feet have been good. I think you can manage your training while on the meds. But everyone is different and you won't know until you are placed on it and give it a try. There are different dosages and schedules so if you do go on it an run into problems, try changing those first.
I wish you the best
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I had my third visit with my new oncologist this week. My only complaint was my hand/foot syndrome from Xeloda. I told Oncologist I'm taking the occasional TWO week break from Xeloda when the HFS gets too bad. He's fine with that.
I also broached the subject of returning to hormonals now that Xeloda has eliminated my liver mets. Oncologist said if I want to revisit hormonals he'd be fine with it BUT he would insist on adding Ibrance to the mix. He Googled Ibrance right there in the exam room so we could look at the side effects together.
Silly side story: Oncologist kept wanting to spell it Imbrance and couldn't pull up online information using that name. I corrected him that it's Ibrance without an "m". But he kept spelling it Imbrance and I finally had to laugh and correct him yet again. I didn't want to embarrass him but it was like he had a mental block about the spelling of that drug! I'm old enough to be his mother so I don't want to be an old know-it-all but it just made me laugh at his confusion over that spelling.
Anyway, right there on the Ibrance side effects list is hair loss. I told Oncologist that's a deal breaker for me at this point. I've been a Stage IV breast cancer patient for ten years and no one knows I'm ill. Once I lose hair it's like a loud speaker to the world "Here is a cancer patient!". No thank you.
We dropped the hormonal/Ibrance discussion. Since Xeloda continues to work for me and my only physical complaint is from Xeloda side effects (which I'm dealing with by taking longer breaks as needed) I will continue on my usual dose.
Whew!
An informative visit about Ibrance though. I'm reading Ibrance forums just to gather information for the future. Because it's such a new drug there's not a lot of real life experience regarding side effects.
Kessala
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Kessala, there is a thread here on the boards about Ibrance, why not check it out to see if hair loss is something the gals are experiencing. I too am on Xeloda, and when it quits working my onc said we would try Ibrance, so I was following it for awhile. From what I remember, the biggest complaint was blood cells lowering and fatigue. I have awful fatigue with Xeloda! And of course HFS. I also have a terrible itchy rash on my back, chest, arms and thighs.
10 YEARS AT STAGE IV.....AWESOME! Have you been to my thread to share that? It's "How long have you lived with stage IV".
Has your doctor tried Faslodex? Not sure if that's more for bone mets or not. It did not work for me, it was so easy! A shot in each butt cheek once a month, and I had NO SE's from that at all.
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Hi Goldie,
I am reading the Ibrance threads on this website and will continue doing so just for my interest. The drug is so new all I'm finding out so far is Ibrance causes low white cell counts and fatigue. I have read a few women experienced hair thinning but not baldness however because no one has taken this drug for very long I don't believe we've found out all the side effects in real life situations.
I was on Faslodex but only for four months. This was when my liver mets were newly discovered. My (then) oncologist scanned me after four months on Faslodex, wasn't happy with the results and had me stop the drug. I told her I'd like to give Faslodex more time to work but she was panicky about the liver mets and said no more Faslodex.
Faslodex was one of the hormonals I hoped my new oncologist would agree to me using again, and he did, but only along with Ibrance. Rats.
Anyway, when Xeloda fails me sometime in the future I hope I can try hormonals again and I hope by then I feel more assured about Ibrance.
How long have you been on Xeloda? I have hand/foot syndrome, runny nose and wet eyes and no other problems with it. One of my first complaints about Xeloda was fatigue but around that time I discontinued taking gabapentin and within weeks discovered my fatigue problem was mostly solved. Turns out I was tired from the gabapentin, not so much from Xeloda. I was prescribed gabapentin for hand/foot syndrome pain and it never helped me.
Kessala
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My HFS was really bugging me toward the end of my last cycle,but after six days off, my feet feel ok again. I actually didn't take the last dose on the last day of my cycle because the feet were so bad. I'll tell the NP on Monday and see if she thinks that's something that I can do again if needed. I really would rather just skip a day than lower my dose, but we'll see.
Kessala - I was on Ibrance and Femara for three months and had no hair loss. Fatigue wasn't bad either. My problem with it is that it didn't work. Liver tumors double in size. On to Xeloda.
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Sandilee,
My Onc has throughly recommended skipping a day or two at the end of the cycle rather than lowering the dose! He would much rather that than have my feet too messed up.
13 months in, I find that my feet don't heal as quickly as they used to, so I'm probably going to have to slightly truncate the next cycle.
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Kessala, I have been on X for 8 months. Faslodex didn 't work for me either. About the same as you, 4 months. OMG, besides the SE's I mentioned above, I too have the dripping nose, watering/burning eyes. The worst for me is this itchy rash. I too have skipped my last day!!!!
My onc pretty much lets me decide what I need to do. I have taken one 2 week break and thinking I need another. He has even said I could reduce my meds, to 2/2 on the last week, instead of my 2/3. I have not done that, I'm afraid to!
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Hi, I'm about to start my 3rd cycle of reload and while my hands and feet are an issue my biggest problem is my emotional state. I am crying at nothing and feel hopeless and that no one likes me. I really want to be positive and this is not my usual disposition. Is anyone else experiencing this?
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Tina, I'm sorry. No, I haven't had any emotional changes from the drug that I can tell. Do you think your feelings might be coming from dealing with the disease? It wouldn't be surprising to be down because of the cancer. It really can knock you for a loop. Most of us on Xeloda are pretty far into various meds, which by itself, can be depressing.
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Hey Thanks so much for the info. This thread is really helping me. I have another question though. I'm moving from hormonal to the xeloda and with the hormone treatments they had to put me in menopause with Lupron. The onc says with the xeloda he would stop the Lupron and that means that I may come out of menopause. That is very scary for me because even the idea that I could potentially get pregnant scares the cr#p out of me. I may go as far as asking to have my ovaries removed. Has anyone had this issue?
Thanks!
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jennifer- just the fact that you are 13 months in, is inspiring to me. I hope I have that long on this drug. I'll deal with the feet.
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Rseman,
If you feel that strongly about not getting pregnant ever again, an oophorectomy might be a solution. I had one because I found getting the shots every month to keep me in menopause to be a hassle. I was always worried I'd forget my appointment. My hospital is not good about notifying you if you don't have an appointment in the books. The oophorectomy was super easy. Laproscopic surgery. I have two tiny scars on each hip. They pulled the ovaries out through my bellybutton so that scar is not visible. Recovery was only a couple of days. The key is to find an experienced doctor who has done a lot of the same kind of surgery. Also, since I have a genetic variant, RAD51D, that is associated with higher ovarian cancer rates, I figured that was one less cancer I had to worry about.
Hugs, Susan
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Thanks so much Susan!
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Tina, the emotional upheaval could be coming from a sense of fatigue. It is always a struggle to keep emotions in check when we have to take meds to keep our cells tamped down in our bodies. I found a lot of help with guided meditation and calming breathing exercises. Aroma therapy is also a go to item for me - I love the aroma of cooked apples this time of year and mint to keep me revived. Hope you are doing well.
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Hi everyone. Hope everybody is doing well. I have just finished my 3rd round of xeloda and the side effects were SO much worse on the round with my feet really painful. I am using bag balm to try to calm it down but I saw my oncologist yesterday in a fearful state as to whether the drug was working as my tumour markers were still riding slightly but he said after examining me that it wS working as one of the nodes had almost gone and the other was smaller and although one marker hadn't gone down another haddock I should carry on. I am still on this high dose of 8 though so am dreading the side effects Barbar
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Tina. I totally empathise with what you said about being emotional on this drug. I have been very much the same. We will get through it though. All the best to you Barbar
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My mom has been on Xeloda for 18+ months now and only once had her cycle pushed one week because her feet were a bit red. She does have watery eyes, but aside from that there's really not been any symptoms at all. She's having pain now and waiting on another scan to get rads on a fracture in the sacrum, but still stable.
Not sure if it's made a difference, but from day 1 she has always taken her pills in a tiny spoon of marshmallow fluff or yogurt because we had read on here that doing so helps with mouth sores/irritation and possibly with heartburn and other gastric issues that Xeloda can bring on. Don't know if it's that, but she has not experienced any GI issues or mouth sores at all.
She moisturizes her hands and feet in the morning and at night and wears the cotton socks to bed to help keep the moisture in. When she did have foot redness the one cycle, she found relief from soaking her feet in cold water and avoiding shoes/sandals that let her feet slip around too much and rub.
Hope this helps!
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I am just finishing my second cycle of xeloda and have a scan Monday. Has anyone had scans that soon? Seems like it would take a few more cycles to tell if it's working
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Hello, Lynn - Do I have a horror-story about Xeloda! I started taking it last December, & after about 2 weeks on it I became violently ill one weekend & my husband found me lying on the floor where I passed out one night. Next day I started passing blood & had to be admitted to ER with HFS in the extreme. Hands became red & severely swollen, then all the skin peeled off, then the feet started. Long story short, I was totally disabled by loss of hands/feet for about a month, had to take disability leave from work, & my husband had to do everything for me - & I mean EVERYTHING, including feeding me, bathing me, all toiletries (sorry if TMI), & even carrying me around the house & to the doctor etc. Hope not everyone's reaction is so severe, but as for me, no more Xeloda ever again. Best of luck to you.
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hi Grahaad
I am now on my 4th cycle of xeloda and haven't had scan yet although I was examined my onc. I think your scan is very soon. My onc said he would need at least 3 to see if it had any effect. Barbar
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Hello-I just started my first round of Xeloda and wanted to get a head start in taking care of my hands and feet. The onc pharmacist advised me that it is easier to try to prevent the side effect rather than wait until it happens and try to ease it. I don't know how accurate that is but I figure I would try.
She said to use a thick moisturizer and used a work to describe it that I can't remember so I wanted to ask if anyone had any recommendations on a good effective thick lotion they like to use on the hands and feet.
Thanks all! Here's hoping Xeloda kicks butt
Renee
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Wow, I am very concerned about severe side effects of Xeloda being linked to excessive doses and advanced age. Its such a strong drug. I started at 3500mg a day and was cut to 2000 after three months. Later I was further reduced to one week on, one off instead of the two week on, one off schedule.
I am 64, and had disabling foot pain within the first two monhs. That cleared up fast after dose reduction. Nausea cleared rapidly, too. I know of women in their 70’s who had terrible reactions much like slevy described, and after hospital interventions, had to stop the drug.
Lots of meds are prescribed at doses too high for some to tolerate. When its a chemo, it becomes critical to insist on safety first. I am so sorry you had to go through that, slevy. Scary and a waste of energy. Did your onc have any useful comments about what happened to you?
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Susan, what kind of dose were you on? My first cycle was 7 pills, and I did not do well on that, at all. Onc dropped it to 4, and now I'm on 5. Not sure which cycle, I would have to look at my calendar, but it's been about 8 months or so.
Rsemam, I'm not sure if it can be prevented. I can tell you it's accumulative. It took a few cycles before it started on me, now lotion hardly helps at all. It seems to let up some on my week off. I use bag balm, organic coconut oil and Jergans with African shea butter.
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Rseman,
I've been taking Xeloda for over two years now. It's working well for me, I'm glad to stay on the drug.
However, I've dealt with bad hand/foot syndrome the entire time. It caused me to take two dose reductions and even now, two years in, I take the occasional extra week off the drug hoping to reduce my skin damage.
You are wise to begin lotioning up your hands and feet now (soles and palms are where hand/foot syndrome takes place) but this will not prevent the problem from happening. As far as I know there's no way to prevent HFS otherwise none of us would be dealing with it.
The damage to your skin is caused by Xeloda leaking out of your capillaries and causing a chemical burn to your surrounding tissue. It's pain and damage from within. Putting on lotions isn't going to prevent or cure HFS. It's pretty much just something for Xeloda patients to do to keep busy.
I have a huge inventory here at home of crèmes, lotions, ointments, you name it. Things seem to soothe for a few uses and then they seem like they're not helping at all. I'm constantly switching out the products I use. After two years of lotions and potions on my skin my hands and feet look like h*ll. They're constantly red, burning painful, peeling skin, bleeding cracks and I've recently lost a big toe nail. Thank you, Xeloda.
So please do lotion up while you're taking Xeloda, but if HFS starts do NOT blame yourself. It seems to be inevitable.
Kessala
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Just finished my third cycle (3000mgs) but stopped one day short again due to HFS. I got a blister on my foot that needed to be drained before I could walk on it yesterday. We had an evening concert to attend, so I really wanted to be able to walk without pain. I did ok with my husband bringing the car to me so I didn't have to walk far, but decided not to take the dose I'm scheduled for today. Tomorrow was the beginning of my week off, anyway, so I'll just add an extra day and hope the feet improve.
I do have a feeling that the meds are working, though. A couple of skin tags on my face have disappeared. I'm taking that as a positive sign, even though it may have no relevance.
I won't know until mid October when I get a liver CT scan. I think the doc will lower my dose when he hears about my foot issues, by one pill anyway. I have found that Calendula Creme is the best for HFS. It doesn't stop it of course, but it seems to be the most soothing and healing.
Kessela- I continue to be inspired by the duration of your treatment, and by the way you have handled the side effects. You are my guiding light here. :-)
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I'll be starting Xeloda soon. Can anyone fill me in on the best treatments for HFS? Sounds like that's the biggest SE for which there is little relief.
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