All about Xeloda

susan_02143

Sue,

Yes. The hand/foot stuff start slowly. At least it did for me. I find that my need for water is huge during my Xeloda weeks. I need to mix my water with something flavored like lemonade. Citrus is very appealing these days.

*susan*

Southernsurvivor

Sue,

I agree with Susan. I didn't have much HFS until 9-10 months of X on 7/7 cycle. Now I have it about all the time - some days worse than others. Red, sore hands and feet that ache and feel like a sunburn. Not fun!

-SS

NicciJ

H/F gradually came on for me, but once it got here, it's here to stay. Some days are good and some are bad but it never goes away for me. Not even when I took an extra week off.

Patty-what are you finished with? X?

So no comments out there at all about MD Anderson? Helpful hints? Doctors to stay clear of? Doctors to try to get? Anything????

goldie0827

H/F was gradual for me. I quit taking X about 2 weeks ago, gonna give Medical Marijuana (MMJ) a chance. My MO told me it was ok, but I got so sick and couldn't eat. So it was obvious, after doing some research, that it was the combination of the two. Anyways, even after being off for 2 weeks, my H/F syndrome is still there. It's much better, but still dry and cracked. Feet a little red, but neither hurt. I've been on it since Dec. 2014.

Patty?

I went to CTCA in Tulsa OK, so I can't help you Nicci.

susan_02143

An observation. Yesterday my best friend from high school, her husband, my husband and I went out to breakfast together. She only comes East once a year so it is a real pleasure to spend time together. Her mother is ill, so she couldn't spend several days with us like previous years, so we met for breakfast. They chose our local Portuguese restaurant where there are NO small breakfasts available. Every breakfast includes a bowl of cream of wheat. Don't guffaw... this stuff is what dreams are made of. And then a massive plate of food arrives with a "bread basket." There was no way I could eat all of this food, but I certainly polished off the cream of wheat, ate 2.5 of three poached eggs and about half of the homemade corned beef hash. When I got home, I took the Xeloda [they don't know about this breast cancer crap] and got ready for the nausea that has been my constant companion this cycle. And, nothing.

Maybe I am not eating enough before taking the Xeloda? So this morning, I made myself half an English Muffin and ate about 1/2 - 3/4 cups of cottage cheese and waited. Again. No nausea. Of course, this means I am going to start gaining weight. Yesterday the meal was so huge that we didn't eat until dinner, but this morning is not quite enough food to skip lunch again. The choices we make, eh? But, I hate the nausea, so I am going to try my new strategy going forward to see if my hypothesis holds up.

*susan*

Husband11

For my wife, the hand foot syndrome came on rather early. By her second cycle her feet were cracking and peeling. Eventually it felt like she was walking on hot sand. Now, it seems to be getting better. She has lowered her dosage of xeloda and taken some time off. It's still bothersome though. She can't wear regular shoes. Only soft flip flops. What will she do come winter? She has been on a urea cream since nearly the start. Started on celebrex, but is now off it because she is on blood thinners. Used to sleep with ice packs on her feet. She has now switched to differin. That will be weeks though before we can comment on whether its an improvement as it works slowly.

goldie0827

Timothy, my most comfy shoes are my Sketchers with Memory Foam.

I've been off X for almost 2 weeks now. Hands are a lot better, but still dry and mildly cracked. Feet are still not too good, I think mostly because the skin is thicker, so when it cracks and peels it's thicker and takes it down to fresh skin.

Susan, I'm glad that you found eating more helps. But I hear ya on the weight gain. I was fine with eating very little, usually a piece of toast with some peanut butter, and that would be all. Or drink an Ensure. I just have never really been nauseated.

My rashes are pretty much nil. Eyes and nose still dripping, eyes crusty in the morning. I've been on a full syringe of the RSO now for a week. Treatment calls for daily treatments for 3 months, then monthly after that. My tumor markers have been going down and they continue to do so. Next labs will tell more, but that won't be for another 6 weeks.

susan_02143

Ensure will only pass my lips if nothing else can be consumed. I don't view sugar, corn syrup, tons of soy, etc as being a healthy way to eat. And the calorie count is higher than a real meal.

*susan*

NicciJ

Goldie, do you go some place for your treatments or do you do it yourself? I don't know anything about RSO, but I thought I would investigate. I cannot stick myself though, because I am a big baby. Would never make a good drug addict.

goldie0827

Susan, you are right about the Ensure. But I was so sick, I needed something. And when it was bought, I never looked at the ingredients until I finished the last bottle. Which mind you, it probably took 6 months to drink those 6 bottles, maybe more. So I got sick again and could eat, went to that section in the store, to look at other brands and same thing.

Nicci, it comes in a syringe, but you eat it. And boy is it nasty! You start small, size of a grain of rice. You work your way up to the whole syringe. Take a whole syringe every day for three months. Then it's just a whole syringe per month for maintanence.

http://phoenixtears.ca/

theziz

What is RSO?

Ziz

goldie0827

RSO stands for Rick Simpson Oil, AKA Phoenix Tears. It's Medical Marajuanna (MMJ)

NicciJ

Ok, I could do that. Goldie, is your oncologist on board with you trying this and is he monitoring your blood work and all that for you or are you having to do that on your own? I meet with my onc tomorrow because my tm's came back this morning and they shot up a bunch so I think Xeloda is history and it will be on to the next. So frustrating.

goldie0827

Nicci, I'm sorry to hear about your markers, damn. And you've already tried Ibrance, what's next? My first treatment was Faslodex, then X and my next treatment when X fails would be Ibrance. How long have you been on X? Maybe you just need to give it a little more time? I'm at a point where I'm just grasping at straws to try and stay alive. What do we have to lose???

I did tell my onc that I was going to try it, and he was ok with it, as long as I stuck with my "traditional" treatment. But I ended up getting so sick. It didn't happen right away, it took several weeks and it was very gradual. It's quite expensive, my first syringe was $70.00, then $60.00, then $42.00 and now $30.00. And the really cool thing is that the manager at the dispensary is trying to get it for me for free!!!! Taking a whole syringe a day can get to be pricey! But it's only for 90 days. I've been on X since Dec. 2014. It was really starting to take a toll on me. I don't know that I will go back on it. I do keep up with labs, every 6 weeks. How much did yours go up?

My brother sent me something that they are trying, but I haven't really researched it much. It's called ACP 196.

JFL

Has anyone had super sensitive eyes (aside from excessive tearing issues, which I have read that many of you have)? My eyes are becoming very sensitive to light and I am having temporary double vision/blurry vision in one or both eyes that occurs more frequently as the day goes on and when I have been on the computer for a long time and then try to focus on something else, farther away. I use lubricant eye drops for dry eyes, which helps the situation a bit but does not provide enough relief. Is this caused by the Xeloda?

goldie0827

JFL, I have the exact same thing. Eyes burn and water and then the double vision. Sun light, OMG, I usually have to cup my hands over my eyes while outside, even with sun glasses on. Almost always ruins my makeup. I have to keep tissues everywhere. I'm hoping this will let up, since I have quit X for now. Hands and feet are better, hands more so than feet. I'm having a hard time getting the cracks around the outside edge and heel to heal.

Peanut0110

JFL I have blurry vision also and I have been on Xeloda since March 2016

It is usually after reading post on this website

PattyPeppermint

no idea what I was done with ??? Anyway doing 1 week on and 1 week off and just finished my 2nd week on. No side effects to complain about. My hip pain isx gone but bacvk pain is not

JFL

Goldie and Peanut, thanks for your responses. Have you raised the light sensitivity and bluriness with your doctors? I haven't yet and am wondering if the doctor would even know of anything to help.

I am seriously considering tinting my car windows because my dark sunglasses and built-in window shades do not seem to help!

goldie0827

JFL, not sure there is anything they can do about it or not. Yes, I have mentioned it to my doctor. It's just written in the notes. I have been off X for about 3 weeks now, and my eyes still water and burn.

susan_02143

I also have significant eye issues, but I have assumes that is related to the incredible amount of midwestern pollen we have been getting with these weird wind patterns and my thyroid eye disease. I haven't left the house without sunglasses for years since my eyes have become so sensitive to light. Yesterday was particularly bad as my eyes were never able to focus properly. Since there is nothing that can be done to fix, I put this in the category of "doesn't it suck to be me" and move on. Washing my eyes with lukewarm water can sometimes help, but only when the fuzziness is due to pollen.

So, I am of no help. Just adding my voice to the Xeloda choir.

*susan*

AimeeMac

What's the longest time any of you have been on X? I am just starting next week.

susan_02143

I am pretty new to this stuff..... I am on cycle 10. My scans and tumor markers say that it is working, so MadameX and I are going to hang out together. for as long as possible. I think stagefree may have the current longevity record.

*susan*

leftfootforward

I started Xeloda in December of 2012. Been on it ever since. Hoping it will continue to be my maintenance drug.

AimeeMac

Thanks Susan and leftfootforward. Sounds like you and I (lff) live in the same area. What part of Seattle are you in? If you don't mind, I'd like to keep in contact with you regarding X.

lulubee

Three years for me. leftfootforward is about 9 months ahead of me. I don't remember when stagefree started.

Sue2009

hi everyone!!! I am feeling so blessed right now as I listen to my 21 yr old play the piano right outside my bedroom door. I also wanted to share what happen to me last week. I was running a temp for 3 days, went to get blood drawn a day early. The next morning I got a call telling me to go to ER immediately, I was septic, which I figured was happening. I was told there were no beds available but they had a bay waiting for me in the ER. You all know how things move rather slowly, especially if u do not appear ill. Last time I was told to go to hospital it took over 2hrs to get IV fluids going. So this time when I got there they took me back right away, nurse was setting up to draw blood, when I told her I had labs done yesterday & I was told antibiotics were already ordered, she tried to convince me that the ER doc would want more blood, he had not even come in, & I was technically not an ER patient. I proceeded to set my stop watch on my cell phone & let the nurse & dr know I was keeping track of how long it took to get antibiotics going. The nurse went into high gear, the dr said something, & all I can remember the nurse saying to him about me timing her & she didn't want any repercussions. Took her less than 20 mins. After that I started to shiver as my temp spiked to 103. It was truly the 1st time I thought I might die from this infection. But God is good & I guess not ready for me to come up there yet.

Lastly, I made the mistake of taking X on an empty stomach last week, oh the pain. I ate a piece of bread & that helped a lot.

Nicci--I went to MD Anderson when I found out I had bone mets. I wish I had gone there initially. I saw the head of the breast care clinic, I think her name was dr Wendy Mould. The one thing that was strange, was after talking to Dr, she left the room & my husband & I looked at each other wondering what to do, she didn't say anyone would be in. After waiting a few minutes we went out to the front desk, & were told we should wait in room, someone would come back.

goldie0827

I made it almost 2 years. After starting some MMJ, I had to quit. SE's were too bad. Even had I not started the MMJ, I was about ready to quit X. I was about to crawl out of my skin.

Lulu and LFF, remind me of your dose please. I was doing 6 pills daily. After about 3 weeks of being off, I'm still experiencing SE's and H/F syndrome.

Becs511

I just started at the end of June and am on cycle 2C (I am a 7/7 schedule), so I am currently on my 3rd week on Xeloda and so far so side effects yet. I hope it continues that way! I have been lubing my feet and hands up every night and every morning, in hopes it will stave off any HFS syndromes.

After being on lots of infusions, X is a nice break from constantly getting IVs. But between the X and all of the anti-seizure meds I am on for my brain mets, during my "on" week, I am taking 15.5 pills a day (plus herceptin every 3 weeks). It is a LOT to keep track off, especially considering I am still working full-time!

leftfootforward

I am on a 14 days on 7 days off cycle.

I am on 3500mg/day. I take 3 in the morning and 4 pills at night.

Originally I was on 4000mg/day but the HF got me at that level.

Becs- I feel for you. When I was on tykerb and Xeloda I think I was on 12 pills/day not counting heartvmeds and but d. And then when I had brain surgery I added steroids and anti seizure meds. I think I got up to around 17 pills/day. I hope you are able to taper off some of the meds soon.?