All about Xeloda
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Chat-that sounds terrible! 17 years ago, when my liver was filled with mets, I went on a clinical trial of Gemzar and Herceptin. Until then, I had no liver pain, but once I started on the trial, I did have pain. It wasn't really bad, but noticeable. My onc told me that meant that the chemo was working....and he was right. In 9 months my (too numerous to count) liver mets were gone!
I feel so lucky that I have a great onc and he confers with the head of clinical trials at the Pittsburgh, PA Hillman cancer center. They actually have tumor boards about ME! Probably trying to figure out why I have survived at Stage 4 for 17 1/2 years!
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Denny, you are a walking miracle. I bet you're in medical textbooks for sure. I want to be like you. We are the same age, too. I'm 71, close enough. I started my journey in 1992. But, no liver mets till December 2016.
I did get some soft flip flops. They are Cloudsteppers by Clarks. I'm all set for our sweltering Texas summer. 💞
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Thanks Grannax2! I bought some really nice memory foam sandals last year, but now my big toenails are too ugly to show them. So now I have memory foam Skecher sneakers. Sigh......
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Please keep us posted, Chats.
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Denny, can you use a light polish. I'm at a point where I don't care anymore. If you think my feet are ugly, then don't look!
I also have some memory foam Sketchers, love them!
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Goldie-I was wondering about using polish. I don't know if it would make my nails worse??? When I was on Taxotere many years ago, I was told that the nails need to breathe.
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Hi
So xeloda took care of markers for a bit. Even shrunk some of my lesions in the liver.Now markers up to 298. Now my mind is racing.
Ibrance seemed to be the miracle worker thus far but not without progression.
Has any tried budwig diet is this center in spain a $ making scheme? Just thought someone can give me rational input.
I'm not thinking to well stressed.
Modern medicine has not worked as of yet. I want to have remission. I have not been ds free since 2009.
Wishful thinking.😊
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Denny, I guess I look at it as, how much worse can they get! We only go to town once a week, so I don't bother, going camping, not necessary either. I guess just if we were taking some kind of special trip, then I would use a light polish. Same with my hands, they look like hands of a 100 year old, I don't want to draw attention to them.
Fun, I have not ever been NED either and my markers are in the 300's, I know there are gals that have numbers high up in the thousands.
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I get a pedicure and polish sometimes. The urea lotion keeps my feet looking ok except my heels.
I’m alive so try not to let my feet or big belly bother me too much. Thankfully my kids haven’t reached an age where I embarrass them.
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Hello again,
funthing42,
I have not had any luck with the five different drugs we have tried so far. None of them worked. Verzenio for two months slowed the progression then jumped back up. Xeloda slowed for two months then jump again. So keep the faith. It's a crapshoot to find the drug that will work for each of us.
Well I got my Pet/CT results. Not as terrifying as my wild imagination and maudlin thoughts would have it. ( I was starting to think about my funeral- that's the maudlin part). Not thrilling either.
Definite increase in bone mets. Curious that the one liver lesion is about the same but they are seeing increased metabolic uptake suspicious for additional liver mets but inconclusive. I have no pain in the liver and all bodily functions are normal. All my other blood markers are normal.
The other worry is that they are seeing multiple pulmonary micronodules throughout the lungs which demonstrate no increased uptake but are below Pet visibility if they are in fact mets. No feelings of problems in the lungs. I did have a small bout of bronchial something and possibly a 24 hour virus. But I don't cough.
So we are on to Abraxane. I am getting a port which will actually make my life easier as my poor veins got really shot from the original chemo in 2011. So no more poking around trying to find a viable vein.
The onc says I still have several other options if this one fails.
Wish I had better news.
Chats
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Good luck chats...my scans always show weird stuff..then the next scan the stuff is gone. My onc said that the radiologists all read the scan differently.
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Denny, so is it good or bad? I guess I would go with good!
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Hello. It looks like I wipl be joining you all as soon as Xeloda makes it to my hands.
Finished Ibrance/Faslodex 18 cycles with bone mets only. New CT showed 4 cm liver lesion as well as new femur lesion.
So here we go down the Xeloda path.
I look forward to reading and learning from you all. I know Grannax2 from the Ibrance thread...Hi Grannax2. Here I am...
Gumdoctor
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And me, too, Gumdoctor. Sorry you have to join us, but welcome.
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Hi Joyner - Yes happily I know you too. Good to see your sweet face here. It is a small world after all...
Gumdoctor
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gumdoctor. I'm on my fourth cycle. Sorry you are joining our club but at least you have old friends here. So far, it's been pretty easy for me, hoping results on July 15 will prove its working. 💞
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I started in early January and have lost track of the Cycles. I'm 7 Days on and 7 days off. Today is the last day of a non cycle. I have a PET scan tomorrow, and have one every three months. We shall see. I continue to feel normal, with the exception of some manageable hand and foot symptoms. I'll take it, if it keeps me well.
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that was supposed to say and on cycle.
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Hello, Gumdoctor, and welcome to the Xeloda thread. I “know you” from following the cats thread and Micmel’s thread, though I seldom post there.
I would just like to offer a few words of encouragement from my personal experience to you, as I know that moving to chemo can feel so serious, and it can help to hear from others who are doing well. So first, I have to say that I prefer Xeloda to the anti-estrogen + targeted therapies I have done. My body feels better. I have heard a number of other women say they also prefer Xeloda. Mild hand-foot symptoms (but I still dance!) and some tiredness (but not as bad as Ibrance!) are my main side effects. Second, my onc says she knows patients who have been on Xeloda for years. I have been on it two years so far and am NEAD. I hope that helps you to feel hopeful.
For the first few cycles especially, as your body adjusts, eat meals that are easy on the tum, and take your pills after the meal. Avoid heat, pressure, friction, and harsh chemicals on your hands and feet. Have a lotion routine. Keep your onc informed as dose or schedule adjustments can make a big difference to QOL.
Gently head butt all those beautiful cats for me. (For non-cat folks — that is a gesture of affection.)
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ShetlandPony,
Thank you for recognizing me from other posts, especially the ones about my precious kitties. It is indeed comforting to meet up here with you, Joyner and Grannax. It helps me feel more comfortable, like a part of a special extended family, as I come to grips with this unexpected change in tx.
I did not expect to never have progression. I am too smart for that. I did, however, expect more time out of Ibrance/Faslodex. This is my fault for being so optimistic.
On the other hand, I have been bracing for progression news for months knowing I was coming up on the median PFS for bone only mets on Ibrance. What a catch-22...
I am quite scared of the unknown, like many others. Having studied BCO posts for months, I believe I know what I am walking into for the most part. I just don't know how I will do it all exactly. The experts here, like you, will teach me what I need to know and will, by example, show me how to get through it. Your 2 years on Xeloda is incredibly uplifting. And I am so happy for you.
Amazingly, I recently realized something very important and with great clarity: I WOULD RATHER BE HERE AND BE SICK THAN NOT BE HERE AT ALL. This makes it easier for me to focus on doing whatever I need to do, to get through whatever necessary, to continue to be here.
I have much to be grateful for and much to continue to live for. It is for these reasons, I will learn how to adapt to Xeloda and whatever else comes with it.
Gumdoctor
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I didn't know there was a cat thread, I definitely need to start posting there.
I also think my body feels better because of not having to take AI's. It turns out I have built a resistance to them ( ESR1) and they were not even helping at all.💞
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Grannax,
The cat thread title is Cats, cats, cats. It is worth looking at if you like cats. I am a proud mommy of too many kitties...
Gumdoctor
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Gumdoctor, I agree with all that Shetland Pony said. It seems from reading that each of us reacts somewhat differently. You just need to experiment to find what works for you.
For the past 2-3 weeks, I haven't been putting anything on my feet at night (I typically only do night "treatments", while in the bed as opposed to during the day, though I do use hand lotion if sitting while doing something else). My feet, though reddish and peeling a bit, seem better. This may be a result of a dosage reduction: I was on 3000 mg/da: 3 in the AM and 3 in the PM, 7 days on and 7 days off (per suggestion by second opinion doctor at Sloan-Kettering in NYC). My HFS gradually was increasing, and my onc dropped me to 3 pills AM and 2 pill PM (total of 2500 mg/day) a month ago. I would say that my feet improved, and my hands aren't getting worse. Still Grade 2 HFS but more bearable. Before dosage reduction, my feet were beginning to be hard to walk on: I felt as though I had sunburn on the soles of my feet.
When I do use lotions/creams at night, I use these bootie things from Amazon. They're more like envelopes for your feet, but they generally stay on, which surprised me:
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For anyone struggling with HFS, I'm not sure if I read it on here or another website, someone recommended just patting on any lotions you are using rather than massaging it in. Massaging increases the blood flow to the area making the HFS worse apparently. As much as I loved massaging my feet because it felt good, once I stopped the HFS really improved.
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Welcome, Gumdoctor. I am a 17 1/2 year survivor of Stage 4 MBC de novo, have been on chemo the whole time and will be on it for life.
I have been on Xeloda for 16 months and am currently NED.
Allybee- interesting about the application of ointment, but since I always use Aquaphor and silicone booties, my feet are no longer splitting.
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Oh yeah, Goldie, I am still NED, and the false alarms always resolved themselves. Like when it looked like I had emphysema.
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The past two days have been rough. My feet don't have blisters but heels have cracks, etc. I've also had unusual fatigue. My feet feeling like they are on fire contributes to not wanting to walk on them. I did get softer shoes. My favorite is very thick soft house shoes by Nautica. Basically, being on my feet is painful. I did use cortisone cream and it helped some. Why are SE so random? Just last week I was bragging about having lots of energy. Unpredictable is my word for this week. Ugh💞
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I was wondering how long everyone has beeen on Xeloda. I’ve had some blisters on feet this month but otherwise good quality of life other than fatigue. Last scan showed some shrinkage which is first med in 3.5 years to do so. MO said average time it works five months but I’ve seen seen some on for two years. Would love hear of longer timers as I’m on month four
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Denny, so good hear you are still dancing with NED. May you dance a lone time!
Gran, the fatigue should let up eventually. As for the feet, I know Denny has success with Aquaphor. I use Actrac-Tain, which is 11% Urea, but I also mix it with some Jergens.
I've been on X for 4 years.
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Oneanddun: I have used your method of NOT using any creams etc. on my feet. I went through a terrible "burning" period but started wearing my Clark's sandals instead of my athletic shoes, kept my feet outside the sheets at night, take lukewarm showers and gradually they have gotten better. My feet are no longer painful to walk on and my hands have improved also (I use gloves to wash dishes/clean). I do use cream on my hands (not Urea) because in this climate when it's 6% humidity, everything dries out! Just wanted you to know your method works! Thanks!
Cindy
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