All about Xeloda
Comments
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Aurora: Are you 14 on 7 off or 7 on 7 off? They may want to keep you at 14 on 7 off so it builds up in your system. I've heard that people can handle it better on the 7/7 cycle. I just started that (after switching over from 14 on 7 off). I'll let you know how I do...7/7 will give me an extra week off each month.
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Kessala: Thanks for the info...it's encouraging to know that one can be on Xeloda for 3 years and get decent results. I have a LOT of bone mets, and thoracic ones are growing a bit (and causing more pain - boo! - using medical cannabis for that). MO doesn't want to switch me to another chemo yet, so I'll be on X for another couple months, along w/Zometa infusions every 12 wks.
L
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Lita yes I'm 14/7 and today they reduced my dose to 3300 mg a day which will start Friday. Today I felt a bit better, the burning sensation on my soles wasn't as intense as the other days and my mouth seems to be recovering as well, the onco did send another prescritption to the pharmacy for the mouth sores but I haven't been able to pick it up, my daughter is really busy and my grandson is sick so I will have to wait till later tonight.
At least it seems that Xeloda is working on my skin mets, the little tumors on my scalp have started to shrink and some entirely disappeared! So as long as it works I will put up with the se's.
Keep me posted on how you're doing and I will do the same.
Aurora
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Aurora, what do skin mets look like?
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Lulubee the ones I have are like little tumors really just "bumps" on my scalp and temple. There's no rash and the skin doesn't break but they're itchi. The one in the temple was excised by my dermatologist and sent to the lab and it came back positive for bc. The ones on my scalp are responding to the Xeloda.
Sorry i have no pictures.
Aurora
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Aurora, I had a skin met on the back of my neck, and it went away in about 6 wks on X.
Lita
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Hello, All. I have just started my first cycle of Xeloda. I am now an X Granny. I have read through a lot of the previous posts and I would like to thank each of you ladies and Timothy for all the information that you have shared. It makes the start of this journey a little easier. To all, have a very blessed day.....
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That's good to know. I have two spots that are healing very slowly. One is (I am pretty sure) a spider bite on my thigh from late June. It left a scab the diameter of a pencil eraser. It is still darkened and rough feeling, and sometimes a light layer peels off. The other is on my forearm. Pretty sure it was a bug bite, too. It was itchy and oozy at first. I scratched and worried that one (anxiety much?) and now it is thick like a little spot of scarring, and flaky sometimes.
So it's good to hear that these bothersome spots don't match your description of skin mets.
I find skin things take much, much longer to heal on these rough meds. Spots on my face can take months to totally fade away. Youth and beauty, alas, alas. Haha.
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I am just about to start Xeloda on Monday. I have regional reccurence to the supraclavicular lymph nodes. I would like to hear from other people who have had their cancer go this route. I want to know if this is bad news. Looking at this forum you ladies all seem to have much worse diagnoses than I do. How long have some of you been living with cancer? How unusual is my cancer given that I have no family history, all the gene testing came up negative, i have a triple - cancer that is aggressive, I'm only 6 weeks out from my last radiation and the cancer is already back, or did it never go away? I'd love your input, I feel quite alone with this new diagnosis.
Thanks
jacky
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jackyp, I had supraclavical lymph node involvement on both sides when I was diagnosed with Stage 4. However, I had bone and liver involvement then as well. The nodes were 2cm and cleared up within a month of treatment and have not returned in the two years since Stage IV diagnosis. In my case, they cleared up on hormone therapy but I see you are hormone negative. Chemo can work very well on lymph nodes as well. Is yours on both sides or just one? I see you are HER2 +. Have you been given Herceptin or any of the other HER+ drugs? Sadly, many of us on here have no family history. I am in the same boat. Although it is not well known with the public (and even many doctors), only about 10% of breast cancer is hereditary. I was shocked when I was diagnosed because I have none of the risk factors and was young. I didn't think it was even within the realm of possibility at that point.
I hope Xeloda works for you and takes care of those pestering nodes! The one benefit to having those nodes (at least in my case) is that they can be felt so it is easy to gauge what is going on. Xeloda has drastically reduced my liver involvement and kept my bone mets stable for 8 months now.
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Hi everyone, just checking in, it's be a month since I've posted, time flies. Welcome to all the new ladies on Xeloda! I hope it works wonderfully for you all.
In a few weeks, it will be 1 year since I started Xeleoda. On my last scans my liver mets were 1/3 the size they were before Xeloda, so that's a big plus. My tumor markers have been slowly rising over the last few months, though. Much smaller than they were before Xeloda, though, and my onc wants to give it more time since the scans were good, so watchful waiting now and facing that everpresent uncertainty, ug.
I could totally relate to the finger and toenail talk. I lost a pinky toenail this summer and my big toenails hurt sometimes, but the thing that gets me is the quick of the nails (fingers and toes) seems to get fused to the nail itself which can hurt and sure looks weird. And the hangnails are out of control!
Jackyp, what a shock for you, I'm so sorry you find yourself here with us. I also had no risk factors, no family history, no genetic traits for bc, younger than typical, etc, but here we are. I read that actually only 10% of bc cases are family history related--one of the many things I didn't have any idea about until I was diagnosed. I've been living with mets since early 2014 and was stage III in 2012, so it's been a few years now. Right now my life isn't really very different from how it was before except for all the pills and doctor's visits. Wishing you the best with Xeloda.
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Hi Xeloda ladies. I just completed my first cycle (2 weeks on, 1 week off) of Xeloda and I am on week 3 of Tykerb (3 weeks on, 1 off) for a lesion in my brain stem which after SRT, months of debate, and me switching to a major teaching hospital everyone finally agreed to treat as a met. So far only minimal SE's but I know it is cumulative. My question is for those of you who were sympomatic, how long until you started to feel better? My tumor markers and every other test/scan are normal. However, this one small lesion in a really tight spot has caused devastating problems, my whole right side shut down, similar to a stroke patient, but this is more neuropathy-lots of pins and needles. My doctors feel as it shrinks off the nerve I should make some recovery and through PT and hard work I may do well. Other than an MRI I am getting in Jan there is nothing else to measure. My doctor said "a few months". Thank you.
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Roses, welcome back! Congrats on 1 year of Xeloda. I hope those tumor markers are misleading and don't mean anything and you can stay on Xeloda longer!!
Welcome, Rmanmom. I started to feel mets improvement after my first cycle. I had liver pain that felt like it was stretching the capsule which disappeared after my first cycle. Over half my liver was mets. It was causing me to hunch over although I didn't notice it until someone pointed it out. However, my pain was not debilitating or serious. I feel for you that one little tiny met is causing such serious side effects!!! Given that your met is small and causing lots of issues, I hope that even minor shrinkage will start to give you relief soon. Keep us posted on how Xeloda works for your mets symptoms.
Does anyone have puffy eyes from Xeloda? If so, have you found anything that helps? In addition to the puffynes, I look like I have big dark circles under my eyes, as if I am sick or was crying. I have tried all sorts of anti-puff creams, concealers/correctors, heat and cold applications and haven't found anything yet that works. I also use allergy/redness eye drops and lubricant eye drops.
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I am no longer on Xeloda since it is not working for me. I wish the world of success of Xeloda for those who are taking it.
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Naturegirl, I am sorry to hear Xeloda didn't work for you. Must be frustrating. What are considering for your next treatment
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JFL...I don't have puffiness, but my eyes are dry as heck; have to use special drops all the time. Aggravating.
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Hi Xladies,,;
Is anyone experiencing weight loss on xeloda?
Thank
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I have lost a little, but I'm trying to...I have degenerative arthritis along with spinal Mets, so losing a bit of weight will reduce the pressure on my back. Some women in my live group have actually gained weight on X.
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Hi JFL,
Surely was a bummer to find out Xeloda has not worked. Oncol. said no more oral chemo. I started X in Sept, I can say I won't miss waking up at 7:00 a.m. to take meds among a few other things. I will have a port put in my chest tomorrow, will rest a week, then next Monday I will begin receiving IV Navelbine. It is all scary to me to say the least. It's always good to hear from you my friend. How are you doing?
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Hello All X Ladies; I have been on Xeloda since the beginning of September. Immediately got HFS and my Oncologist cut dosage to 3000mgs daily. (3 tablets twice per day). The HFS has eased but I have developed this odd pain in my upper chest, upper back and arms. My skin and underlying muscle is tender and sore -- not quite flu like sore but tender and painful to touch. It is uncomfortable to have pressure on my upper back, wear a bra or any kind of bracelet/watch. Has anyone else had this side effect?
Hope you are all having a lovely Sunday!
Kimberly
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Kachin...those muscle and back aches are part and parcel to X's SEs. If you Google X and pull up the SE section of the drug description, you'll see so many (way too many to list here, unfortunately). Not everyone gets them all, thank God. But most people do get the H & F syndrome, and some weird tingling sensations. BTW: Welcome, but sorry you have to "join the club" with us.
I get the tingling in my upper back and shoulder from time to time. I have a LOT of pain in my back, but I also have degenerative arthritis as well as compression fractures and mets, so not sure if X is contributing to that or not. Keep an eye on the upper chest stuff. Is it on the left side or the middle? I'm asking because X does have some cardiotoxicity (lovely, right?), and I have to monitor that as well because I have a cardiac arrhythmia on top of everything else.
Good luck on X. It definitely DOES work for a lot of women in terms of bone and liver mets.
L
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Lita,
Thank you so much for the response. I am doing my best to embrace this situation as positively as I possibly can; and, thankful for the blessing of being in contact with this group of amazingly strong women.
Kimberly
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Ziz, I gained 8-10 pounds quickly on Xeloda. I suspect it was going off hormone therapy. I am the opposite of most - found it easier than usual to maintain my weight on Aromasin, Faslodex and Tamoxifen, but experienced a sudden 8-10 weight gain when I stopped those hormone therapies. It took time and effort to get back to my normal weight in each case. In this current instance, going off Cymbalta and starting Wellbutrin seemed to help
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Naturegirl2 sorry you have to move on. Let me ask you, how many treatments did you get? Best of luck on your new treatment.
Jackyp the shock is tough. My daughter was in her 20's, it's been a fight since then. She is just passed 30, no fam history, all tests were negative. Still find it freaking unbelievable.She just finished her 2nd cycle with Xeloda. But she is also on Ixempra/Herceptin.
What is the best way to detect the liver mets? Onco insists on only Pet/Ct, because she also has bone mets, brain mets...I am always scared they miss something. I am actually torn, because they ordered a bone scan for the extremities and a Pet/CT for the rest of the body. What a waste. She always had whole body Pet/CT, aghh, TIA
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momalltheti, I know, it's a bummer. I took 4 cycles of Xeloda then had some progression my oncol. noticed from a chest cat scan due to coughing and whizzing. He put me on a cough syrup and inhaler but this cough continues. I began with the cough on my 2nd cycle of Xeloda. I read that 10 to 29% of people taking Xeloda get a cough. I will begin Navilbine this Monday. I had a port put in yesterday. Does anyone know how long a port lasts. He put something in called 'Bard' power port. With all this coughing that has persists for weeks, my chest is worn out. I'm sure that won't help my new port. I put in a call to my oncol. recommending a pulmonary doctor. Anyone on this thread taking Navilbine? Side effects, suggestions on port etc are most welcomed. Thanks everyone.
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Naturegirl2 were you taking Xeloda on it's own? So sorry about your cough. Very smart that you will be seeing a pulmonologist. My daughter was on Navelbine before put on Xeloda, it did not do much for her. But her thingy is a tough nut to crack, you know. Also I tried getting a thread for Navelbine here, but it's very limited, but do look into it, some ppl actually did very well with it. It's easier than X that's why she was first put on that. Best of luck!
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Nature girl I have cough from Xeloda and went to see the pulmonologist still waiting on results. I've had a power port for three years with no problems. I like the power port because among other things it can be used to draw blood and to inject contrast for PET/CT. I got an inhaler and a nasal spray from pulmonologist and that helps cough.
Hope you feel better soon.
Aurora
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hi there!
Been away for sometime again.. still on Xeloda.. one + one (500mg) per day. Along with everything else.. TMs not the best but still under control.. do hope all of you can stick with it as long as I have so far. MO said a lady has been on it for 8 years!
Hugs
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Hi all,
I'm about to start Xeloda after failing Faslodex and Ibrance.They are starting me on 4000 mg. Hoping for a good run with it. I will be following your posts.
Wishing all of you continued success on Madame X.
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December 4th will mark my 4 year anniversary in Xeloda. Hanging in there and wishing you all the best
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