All about Xeloda
Comments
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Just got back from a meeting with my wife's oncologist. Her recent PET scan showed mets were being reduced, some even gone! Wow, great news. It takes time, her oncologist told her. She's on 7 days on and 7 days off, 6 pills per day. Her Xeloda SE's have been miserable, especially the H&F.
Wife's ER/PR+ had turned triple negative with numerous mets to spine.
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Congratulations!! That's awesome.
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That's great news, Mike, and wonderful that your wife is doing so well on the 1 week on/1 week off regimen. Hope you can both relax a bit now and celebrate!
And shepkitty, thank you for sharing that Chemocare link. The information page my specialty pharmacy includes with my Xeloda isn't nearly as comprehensive or informative. I wonder if it can be pinned to the top of this thread so that newbies especially will have handy access to it?
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Mike, HFS waxes and wanes. I was doing pretty well for months, and now my HFS is going full strength. Haven't changed my hand care routine...still using good creams and gloves. I've been on X for over a year, tho. I would say fatigue is the worst.
You can take Imodium for the diarrhea, Zofran or something else for the nausea, however the fatigue is not as easily remedied. But no Tx is without SEs. AIs have their own host of SEs too...bone pain, muscle aches, etc.
Everyone watch out in the sun. X makes you photosensitive. We can have eye problems, too, which make our eyes very dry and sensitive to light. I'm experiencing that as well.
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Mike, that's excellent news on your wife's PET scan. Have you talked to the onc about ways to mitigate the hfs? Here is a link to a publication I mentioned in a June 29 post. Maybe see if your wife's onc thinks any of the ideas there are worth trying if you haven't already.
http://www.oncologynurseadvisor.com/ce-courses/pre...
If we can get it done, it might be good to pin this one to the top of the thread along with that useful Chemocare link. (Thanks, shepkitty.) Although I do want to check and see if it is the latest such publication.
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Her main problems are H&F and fatigue. There are other problems but they come and go. She sits in her chair with our fat lazy cat on her lap for hours. The Hands and feet get just barely up to the point of being miserable then her 7 days of pills are up, same with her energy. Problem is on her free week she wants to get too much done and the doctors always pick her free week for consultation, tests, etc.
Next PET in 4 months. Most mets gone and on the ones left, the SUV dropped from 7.9 to 5.2. Yet, her tumor markers keep going up. With the last PET scan her oncologist has conclusive proof the mets are either being reduced or gone all together. One more tumor marker check and if they still show them high or going up he's going to discount them completely as unreliable. He said that happens to some folk, just can't believe them.
Gosh, I yakked on and on.
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Mike, Pretty much the same for me, except sometimes my stomach hurts more on the off week as the toxins are being cleared from my system.
Yeah, off week is rough...blood work, onco visits, picking up new Rx's, etc. Managing MBC is a full time job with coordinating everything.
Try to take some day trips and do some fun stuff on the off weeks when she feels up to it. Just going to a lake or by a river is refreshing and healing. We're gonna try to go to the wine country the end of next week. It'll be hot, so I'll have to prepare.
Hope the numbers keep going down.
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Just love when my finger nails break while I'm washing my hair. #whoneedsboobiesandnailsanyway
😆
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Lita, I can't even be outside when it's totally cloudy, without having sun glasses on.Even in the theater, if it is a dark scene, and then it gets bright, I have to close my eyes.
Stef, my nails are so so brittle as well. My cuticles almost feel sharp.
Mike, glad to hear of TM's going up, but scans show a decrease in mets. TM's have usually been a pretty good indicator for me and they did go up last blood work. So maybe the same for me? Just to clarify, I don't "literally" mean I am glad her TM's went up.
For those of you that were on Ibrance, how long did that work for you. I ask because that will be my next treatment plan if X quits working.
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I've had allergic reactions to any eye makeup with spring and summer. I thought it was our bad allergy season. Maybe it's Xeloda! My eyes gets very watery and itchy.
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Stephanie, Never been on AL. Dana Farber originally put me on Ibrance with Faslodex and Xgeva. It's so strange but I wonder if Ibrance doesn't work on liver mets. After 8 months, Back to Dana Farber after liver mets discovered and he put me on Zeloda and pushed my Xgeva to every six weeks. I hope it works for us. I have never had Taxol or any armchair chemo yet. Keeping my fingers crossed for a long run on Xeloda for all of us.
Hugs
Anita
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Kaption,I would venture to say it's Madam X. My eyes water a lot too, not so much itch. And I have a drippy nose a lot as well.
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I started to get a rash on my eyelids, wondering if that is also Madame X. A drop of alpha hydroxy helps it but it itches, and it's something I've never had before. Finishing round 3, CT scheduled for next Friday. Fingers crossed.
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I've also have extra eye sensitivity, both to cosmetics and sunlight. Some days something will just set it off and my eyes and the area around them will itch and burn. I've never been able to use many eye products due to an allergic type reaction, but it's happening now with products that did not bother me in the past. Ihave to wear sunglasses while driving, and if my DH is driving, I feel like the visor is never big enough to block the sun. This is all since starting Xeloda.
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Lol, Photogirl, "armchair chemo". It was all I could do when walking into the infusion room not to exclaim, "Not the comfy chair!" (The quote is from a Monty Python skit.) I thought it was hilarious, but figured it was best to refrain from saying it so that I wouldn't offend anyone or make them think I was nuts.
Yup, I have to keep my nails short or they break. Eyes were worse on Ibrance, but I still use drops 2x a day. The skin on my chest has become more sensitive to the cleaners and adhesives when I have my port accessed. The VAD nurses think it is not only because of repeated exposure, but because of all the cancer drugs over the past few years. My skin in general is even more sensitive to the sun and lotions than before. Perhaps lack of estrogen plays a part in all this, too. Soo, I am the queen of finding unscented, sensitive-skin cosmetics and sun protection clothing. See, shopping is the solution to so many problems!
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Funny you all think your nails are brittle. I feel like mine have improved! Used to be really brittle when I was on Fas & Femara.
Tuesday I start cycle 2. Cycle 1 was uneventful. Here's hoping SEs aren't cumulative [yes I know it's wishful thinking]. I've no idea what the blood work on Monday will show.
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Well, now that you mention an improvement, pajim, my eyebrows and eyelashes have improved on Xeloda (off anti-estrogens). You can actually see that I have lashes now, even without mascara. And the thin places in my eyebrows have filled in enough that I feel comfortable skipping the brow mousse many days. Hoping you get a good report Monday!
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Hi, I have cancer in the liver and lung and my doctor recommend XELODA, I completed the 2 weeks with xeloda, Almost finishing the second week I notice the signs of HFS on feet and hands, and my all my head It turned dark red, half purple, my back hurts, but the worst has been stomach discomfort, since I started using Xeloda I have had diarrhea almost every day, but at the end of the second week with xeloda the vomiting began with fever and if we add the diarrhea, you know, I had to run to emergency, and I still stay in the hospital with vomiting diarrhea and fever that comes and goes and the stomach ache is terrible, so much so that I have been given morphine, I've been in the hospital for almost 2 weeks... This old treatment is not good and I do not recommend it, since in 2 weeks of treatment have not done anything for me, just ruining all my organs, it really is a devastating medicine. You can opt for something NEW and better, with so many trials available with fewer side effects.
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Miglemigle, I'm sorry to hear you have had such a difficult time. Please talk to your doctors about what treatment is right for you, and know that sometimes changing the Xeloda dose or schedule can make a huge difference. But also realize that this drug has a proven track recored and has helped many of us tremendously without severe side effects.
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miglemigle, I'm so sorry you've had such horrible problems with X, but two thoughts come to mind. First, there is a subset of people -- those with certain mutations in the DPD gene -- who cannot tolerate X, and from description of your severe SEs, I'm wondering if you fall into this subset:
"Based on postmarketing reports, patients with certain homozygous or certain compound heterozygous mutations in the DPD gene that result in complete or near complete absence of DPD activity are at increased risk for acute early-onset of toxicity and severe, life-threatening, or fatal adverse reactions caused by Xeloda (e.g., mucositis, diarrhea, neutropenia, and neurotoxicity). Patients with partial DPD activity may also have increased risk of severe, life-threatening, or fatal adverse reactions caused by Xeloda.
Withhold or permanently discontinue Xeloda based on clinical assessment of the onset, duration and severity of the observed toxicities in patients with evidence of acute early-onset or unusually severe toxicity, which may indicate near complete or total absence of DPD activity. No Xeloda dose has been proven safe for patients with complete absence of DPD activity. There is insufficient data to recommend a specific dose in patients with partial DPD activity as measured by any specific test."
My other thought is about the dose you've been on. My observation -- especially in a FB Xeloda group I'm in -- is that some oncs seem to start women at extremely high doses (e.g. 5000 mg/day), which is far more than some can tolerate. But from your description, I would not be the least bit surprised if you fall into the DPD deficient subset as described above. Did your onc suggest or mention this possibility to you, or test you for this deficiency?
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Very good thought, Deanna! I knew about the DPD gene but didn't think of it just now. Well-done.
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miglemigle, I had a lot of problems with a 14/7 cycle of 4000 mgs a day.
Now that I'm on 7/7 at 3000, I'm doing much better, except for the fatigue.
It wouldn't hurt to get the DPD checked out. It may get worse if you don't address it immediately.
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miglemigle - Hope you are doing better Those are horrible se's Gentle hugs coming your way
Mike - my markers have never been reliable, my onc doesn't use They have remained stable and in the very low range through two progressions We use PET or CT scans to see if things are working
I am half way through my 4th cycle Constipation is my biggest issues I have gone from carrying immodium to carrying Colace Also have had some sleeping problems -had them before but they seemed to get much worse on xeloda. Onc recommended advil PM or something similar it seems to work
How soon did folks have their first scan? I have a trip planned with my DD in September . I was adamant that I didn't want scan til I returned, onc was good with that. Now I am getting anxious and curious and my want to see how things are working before trip - but if X is not doing its job,then I don't want it hanging over my head for a week I really want to enjoy. Not sure which way to go on this one UGH
Hope all are able to enjoy this Sunday.
Be well
Nel
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Miglemigle, I have to agree with Deanna and Shetland. You need to get some further testing done. My MO calculated the amount of Zeloda I should take according to my body mass not just my weight. She did all of these calculations in front of me and decided 1500mgs twice a day. You might be on too high of a dose. There are definitely calculations they go by so that it's not toxic to your body. You might want to talk to your MO.
Nel, I'm thinking I have sleeping problems too. Not sure if it's because I take a nap but since I've been on Xeloda I wake up at 5 am everyday and feel restless at night. About the diarrhea and constipation I never had diarrhea but constipation started so I started making smoothies with plant material like kale nuts, and I through all types of fruit in. It works wonders!! They say the liver metabolizes plant and fruits better than other things. I'm not a health food bug but I bought myself a vitamix machine and things are going good now. I don't have many answers I'm only 9 months but I've learned so much from this site and what reading I do.
I hope you feel better soon. Have a nice Sunday evening.
Anita
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Nel, I have my scans every 3 months.
When was your last scan? You could probably push it out a few weeks to accommodate your trip, but putting it off more than a month may not be a good idea, depending on how invasive the cancer is.
Sometimes we can tell when there is progression because of pain and other symptoms, and sometimes not.
I'll have may next scan about 6 wks before I go to Hawaii. I'll either be put on AIs if there's stability, or I'll move on to IV chemo. I'm okay either way. I just have to accept whatever happens. So far I'm just happy that I've been given a little over a year now. I realize it could always be worse.
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My MO will do first scan after three months. I think I would wait an extra week for a nice vacation.
I'm in the second week of my third cycle. Things have settled a little, after adjusting the dose up and down, ending up with 3000 a day. Still fighting fatigue though. Having trouble sleeping, yet can't stay awake so much of the time. And I never know if I'm gonna have diarrhea or constipation. And I'm tired of fighting the HFS. I baby my feet, have had continued special creams and socks on them, and have tried every type of cushioned shoe, sandal and slipper, with no help. They are constantly dark red\brown, and burning. At night the neuropathy kicks in. The bottom of my toes are especially bad. And if I walk at all, even a little, they get really bad, and hurt. And I'm fighting blisters on the sides/bottoms of all toes, especially the big toes. Thinking maybe I should try to get my MO to switch me to a 7/7 schedule.
Man, for those of you that have been on this for years, or any other treatments, my hat's off to you! I don't see how you've been so strong, for so long, fighting this disease. My mets journey has just begun, and I'm already so tired of it. I knew it would be extra hard for me, as I was already suffering from so many physical issues, but dayem! I don't know how I'll do anything long term.
And now a WTH?! I colored my hair today, same stuff I've used many times, and when I was done, you can't tell I did anything, the grays are all still there?! This has never happened, so I'm wondering if X has something to do with it? Gonna be very bummed if I have to have gray hair on top of everything else!
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My last scan was in April and that indicated a progression and the switch to Xeloda. I am fortunate that things to this point have not been aggressive 3+ years on my last treatment and not very invasive 1st progression was to my adrenal gland and now that is where it is again. Wait, do it, wait do it...... In addition I am in the process of retiring and moving mid August. UUGGGHHH All good stuff but much on my plate
Thanks all for input - still not sure what I am going to do!!
BestNel
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Nel, I don't quite understand. What are you deciding to do or not do?
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Mimi, switch to 7/7. It's MUCH easier to handle. You'll still have some HFS, but for me, at least the blisters went away.
I got too ambitious a couple of days ago and walked over 1.5 miles with my daughter...a little too far. My feet did not blister, as they normally would have done, but they were sore.
The fatigue will still be with you on 7/7, sorry.
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Shetland pony,
YOu are confused because I am confused Not sure what I am going to do
Nel
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