All about Xeloda
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I started Xeloda this week; first dose was Monday night. 1500 mg 2x a day. This is my 3rd treatment regiment in less than a year since stage 4 dx. Started on Faslodex last August with initial bx of lung mets. In November, mets to the lumbar and cervical spine that were not there in September. Halaven started in November, early results were positive with reduction in lung mets but 2 months later they were back up again by 20%. So here I am on Xeloda, and I've been monitoring the thread for a few days.
One thing I haven't seen comments on is hair. I lost my hair with strong chemo, but it came back pretty much the same. When I started on Halaven, I waited until it started falling out in chunks, and had it shaved again. But it never all fell out, was just thin and patchy. Now, 6 months later, it's about an inch long (I did get it shaped a bit 2 months ago) and it's so thin you can see the outline of my scalp through the hair, and the texture is coarse and rough. Just doesn't feel healthy at all. Should I expect it to fall out? Have you experienced a change in texture or growth pattern? Thanks in advance.
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I've been wondering about the hair too, my Onc said it won't fall out on Xeloda, yet it is listed as a side effect.
Speaking of side effects, I've only been on X for 24 hrs, and the bottom of my feet are already bright red and burning and tingling. And my hands are starting too.
And now it's the weekend so I won't be able to talk to my doc until Monday, I'm afraid how bad it will get by then. 
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Anne and Magdalene -
Welcome, sorry you had to join this group but it offers amazing support and advice. I started Xeloda in March 2017 at 3000mg per day, 7 days on, 7 days off. Within days I was extremely lightheaded and fatigued. MO reduced dose to 2000mg per day and those SEs subsided. Knock wood, still no signs of HFS. MO told me the majority of patients have to have initial dose reduced. Praying that we are all on this thread for many years to come.
Marti
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I have been on Xeloda since December of 2012. I have all my hair. In fact it's the longest it's been in quite some time ( chemo and brain surgery). People have been commenting on it. So hopefully your hair will start to come back.
As far as SE, the first several cycles are the roughest as your body adapts to the new chemo. And as stated, people often have dose reductions or change the schedule and do very well. Talk to you MO.
Hipeingvthings settle down in terms of the SE.
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Mimi, you are on a pretty high dose. I started out with 7 pills a day, and just couldn't handle it. If things get too bad for you, I would lower the dose to 7 or maybe even 6 pills a day. I'm always adjusting my dose, sometimes I'll take an extra day off on my 7 days off and do 8, and maybe quit my 2 weeks on a day short. I have not lost any hair. The H/F syndrome is accumulative, as is the fatigue.
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Thanks ladies. It seems, from what I've read around here so far, no one seems to lose their hair, just maybe some thinning. And, it seems like almost everyone has had their dosages reduced because of SE's. I was thinking I might need to do that on my own, since it's the weekend, and I can't talk to my dr. Just wan't sure how much to reduce by.
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My wife's hair has thinned a bit during her year on xeloda. We are not sure if it was the xeloda, or a consequence of poor health she was experiencing when her liver was really messed up and she had ascites. Her hair seems to be filling back in again.
Her Onc is planing to switch her to palbociclib some time this summer, to give her a break from xeloda. It's slowly been wearing her down, and also causes her sleep problems from the hand foot syndrome and neuropathy like pain in her legs at night. On the other hand, its been quite effective for her.
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HFS can be pretty severe for some. I started off with 4 pills 2x per day 14 on 7 off, and my hfs didn't really kick in until midway thru the 2nd cycle. I had to cut my dose to 3 pills 2x per day because of the diarrhea.
When I was still dealing with the trots, I asked MO to cut it again, siting studies that said 7 on 7 off worked just as well and was better tolerated. I still have a bit of hfs, but it's manageable, and I hardly have diarrhea at all on the 7-7 regimen.
I've been on X for a year now, and have had some progression, but it's holding the liver and organ mets in check. What I hate is the fact that I have very little feeling in my fingertips. Putting on earrings is nearly impossible.
I still have my hair, but I've cut it really short because of light-headedness and fatigue...my long hair became too difficult to wash, blow dry, etc.; and one thing I've noticed is people don't take you seriously when you say you're stage 4 and have all your hair....sheesh, like they think I'm making all this shit up?
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Timothy, my wife has medical coverage through Kaiser Permanente and her oncologest recently changed her schedule from 8 pills twice a day, 14 days on and one week off to 6 pills per day 7 days on and 7 off. This was due to a recent study that was approved by the FDA and is now Kaiser wide treatment norms.
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Interesting Mike, I'm wih Kaiser too. And I just started, with 8 pills, twice a day, 14 on/7off. Hmmmm
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Mike and Mimi... Are you saying 8 pills total or 8 x 2? And are they 500 mg. each?
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Yes, that's what my wife got originally. Now its 6 per day for 7 days on and 7 days off.
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Mimi, I'm also with Kaiser. Started X last year, same dosage as you, 8 pills (4 in the am, 4 in the pm) 14 on and 7 off. Kaiser wanted to start me with the higher dose to kick start the chemo process. Then we tapered down.
Not sure if all Kaiser MO's have gotten the "memo" yet about 7 and 7 schedule.
I like the "metronomic" low dose idea which was discussed earlier up the thread. Three pills throughout the day with no days off to keep a steady stream of it in your system...but still in trials from what I've read.
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For what it's worth... especially for anyone new to Xeloda... I was very happy that both my oncs (UCLA & local) believe in titrating up to find your best dose, rather than the reverse logic of seeing how much you can't tolerate and backing you off doses that are too high.
And I have two questions today, especially for those who have been on Xeloda for awhile...
First, what, if anything, do you do in your week off to detox, especially if you have some liver mets? I am trying to strike a balance between wanting to take any toxic load off my liver, but also a bit hesitant to use the Milk Thistle I'd purchased, for example, after my DH questioned if using it might also remove necessary Xeloda from my liver. I haven't yet looked into Xeloda's half-life, but at what point do you think it's safe to detox a bit? Any thoughts?
My other question is about the ugly reddening that happens to my extensive sun damage during my 2nd week on Xeloda. In addition to freckles looking like chocolate chips, this past cycle (#3 for me) I had some pretty severe reddening, especially my hands and forearms, wherever I have sun damage. I doubt there's anything I can do about it -- and I suppose it's just a reaction to the Xeloda, as it's faded considerably in the 3 days I've been off the med. But I'm curious why this happens. Has anyone else experienced this or asked their onc about it? Deanna
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Xeloda has a really short half life. Less than an hour. So the drug itself clears itself from your system very rapidly.
I do know that from tracking my wife's tumor markers, that it continues to kill cancer cells even during the week your are off it.
My wife does take supplements that could potentially interfere with the drug's metabolism, in particular, oil of oregano, but only during her time off.
She did take milk thistle at one time, but I was worried about a myriad of potential risks, such as interference with drug metabolism and estrogenic properties that milk thistle might have.
My wife takes AHCC every day, and since taking it, her liver values improved initially, but seem to have plateaued, and see sawed up and down. It's supposed to be good for the liver, in addition to its main properties of being anti cancer and immune enhancing. She's actually going to drop the AHCC for a few weeks and go back to high dose maitake D extract, and see if her blood counts get better or worse. Switching up mushroom extracts might be of benefit, not that one is actually better than the other.
My wife got a lot of freckles initially when she started xeloda, but they have since faded. The Onc said it was the xeloda, but I'm wondering if her liver problems didn't play some role in it. As she's still on the xeloda, but her liver got better, and the spots went away.
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Deanna, I haven't gotten red but my skin does seem to be a bit darker--people keep commenting that I look tan even though I use sun screen and hats. And I have lots of those little red blood vessel dots all over my legs. AND bruises everywhere. My legs are covered in them.
I restarted putting chlorophyll drops in my water and I think it's helping with my energy a bit. I also put coriolus and cordyceps powder in my green shakes, which I try to do everyday but have gotten lazy and tired of them.
Is there a thread specific to metastatic about diet or supplements? I feel those subjects are often where I have questions.
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I've been on X for a year now, and believe it or not, some of my keratinous skin lesions have actually fallen off! One large one on my forearm looked pre-cancerous and scabby (itched a lot, too) and it's completely gone...nothing but smooth skin now. Same with a couple on my back.
Unfortunately, I now have more freckles on my previously freckle-free face 😣. Hands have them as well, even tho I wear cotton gloves most of the time. My arms get really red and tingly out in the sun if I don't wear a long-sleeve shirt. My fingertips down to the 2nd knuckle have turned really dark. My eyes itch and burn and get really blurry...that's part of X, according to MO.
Some off weeks I feel worse than I do when I'm actually taking X. MO says X is cumulative, so that's to be expected.
Beets and natural beet juice help cleanse the liver. I don't take milk thistle while doing X, but I did take some when I was getting rads for a couple of weeks and not on X. I worry about interference in the liver pathways as well as estrogen mimicking. I stopped eating any soy products cuz they worked so well when I was going thru menopause...the estrogen in the soy milk and tofu really helped my hot flashes...so now I have intermittent hot flashes again when I'm not freezing from the chemo. Not fun when I try to sleep - I go from one extreme to the other in a matter of minutes.
Hope this helps.
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I appreciate reading all the experiences and tips.
Just completed my first 14 days. MO trilated my dose. Per day 2 / 2 for 3 days. 3 / 3 for 3 days. 4 / 4 for 3 days. The nurse who gave instructions did not mention 5 so I didn't go there, couldn't anyway. Felt like I would be in ER due to short of breath from any exertion. I will say this is my only SE on first course.
I was told to begin even though my WBC was 3.5 and had been 1.8 previous week. Was so sick and exhausted from low counts and getting over the Ibrance / Femara.
I was also told by phone nurse to begin right away and I was anxious to o so since I want to get better, been a long year++. But it was a Friday. So we went to a restaurant near the ER and ate then I took my first dose of 2. Waited two hours. : ) Was OK. Did not take the evening dose, wanted to see if I would tolerate it. An ambulance takes 25 min to get here on the ridge. So for the first weekend I just did 2 each morning with meal. Then the trilation dose. I got to 4 / 4 a day. Did extra day at 3 / 3.
Had a PET CT Thursday. Results w MO appt tomorrow. Labs again in AM.
Short of breath is a rarer SE and more likely in people who are over 50 (from beginning drug to 6 months on drug especially true) and have breathing issues like COPD and asthma, or have health issues like RA and I think Lupus. I have Lupus symptoms, hypothyroid and after cancer mets around bronchial tubes being compressed and lung lobe collapsed, then had asthma and COPD dx. So I am in the group and sure enough. I found that info on a drug review link. 4.5% it said had short of breath out of I think ... well here it is http://www.ehealthme.com/ds/xeloda/shortness%20of%...
I have read that the short of breath SE can possibly be plural effusion. This would show in the PET CT. Or MO may order an xray tomorrow to be sure. I don't know yet.
I do know I want the Xeloda to work - I think it has already - and to remain on it but the breathing is also survival, so concerned I may be taken off it.
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well the sun is back in seattle and I had forgotten how I reacted to it while on Xeloda. I am going to have to remind myself to wear sleeves at all times. You'd think I'd remember that after 4 years but I was just so super excited to be out in the sun.
Doesn't help that I am a fair Irish girl.
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You guys are such a wealth of info! I already have some skin pigment issues on my arms and throat, guess I'll have to be really careful in the sun. I don't go out in it much, because I have such a low heat tolerance. 😓
Lita, hot flashes are the worst! Chemo put me into instant menopause, and the Arimidex absolutely killed me. My primary care doc said she had never seen a patient before, with hot flashes as bad as mine. They became debilitating, and I even passed out once in Kaiser from one. After 5 yrs of the hormonal therapy, I only had one month free from the Arimidex, before my new MBC dx. They've gone back to mostly just face flashes, thank god, because I couldn't deal with those on top of all this.
I mentioned before, that it didn't even take 24 hours before my feet started burning and turned bright red. I feared how bad they'd get over the weekend, but so far, they've stayed the same. Trying to be very careful, and keeping balm and socks on, which I hate since its been in the 90's here. The fatigue is killing me, I can't stay awake, and there are times when I don't even have the energy to sit in my recliner, I have to lay down in bed. UGH.
Good luck to those getting scan results this week. 🙏
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Does anyone experience sleep problems on xeloda? My wife cannot sleep without a sleeping pill. She can go for days straight, only getting a couple of hours of sleep a night when not taking a sleeping pill. Sometimes its her legs that bother her, other times, she simply can't sleep. Anyone have any remedies, aside from sleeping pills? She's tried melatonin and gravol.
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I've heard that putting a bar of soap at the foot of the bed under the sheets can help with leg cramps. An old wise tail that done on these boards have said works.
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Cannibis oil, if you can get it where you live, has completely rid me of my ambien addiction. At least it's natural.
Stefanie
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For sleep I use a tart cherry supplement that seems to help me quite a bit. The first one I purchased was from King Orchards, a grower in MI. The one I have now was a very highly rated one from Amazon by Morning Pep. It's twice the mgs., but I think I prefer the one from King Orchards, although both seem to help me fall asleep.
I also recently starting getting B12 shots -- also purported to improve sleep. An ND offers them weekly at a local health food market, and I've now had 3 and definitely have improved sleep and energy, so much so that my DH got one this past week.
Other than these two things, I've tried all sorts of natural sleep products (e.g. melatonin, camomile, lemon balm) and combinations of same, as well as a very low dose of Xanax, and either they don't work or leave me too groggy to function.
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Decent news on scan. There is only one place where cancer is now - the large lymph node mass that is now 3 inches wide and two inches deep in my clavicle. It is pressing into the right side of throat. Pressing into muscles and causing mighty pain that pain killers do not touch. The other cancer nodes are gone. Liver could be a lesion. But I know in my heart the Xeloda for two weeks got whatever it was backed down.
The reason I cannot breathe right is the mass is pressing on my main airway at throat. I have a sleep apnea machine that I will use on gentle pressure during day to help me breathe deeply.
Also this has caused the upper lobe of right lung to again collapse. I know, omg but it is still good enough news I am happy enough.
Well now we know. I consider it all good news. MO does too. I respond to Xeloda but this is a hurry and fix it case so the radiation is best course and then back on Xeloda. Seems the doctors are in agreement 7 days on and 7 off with 3 / 3 and 4 / 4 my likely dose each day on. My MO thinks 5 / 5 will be too much for me. He thinks I can remain on it for years and do well.
I begin radiation there on Thursday. 10x. Did well when the radz for on the lymph node masses crushing my two bronchial tubes. But that was 12 seconds twice. This is more and larger. Near thyroid an throat.
If I had all this to re-do I would go on Xeloda from beginning. Not Faslodex/Arimidex - Faslodex was questionable and sometimes it was like H1N1 for hours or a day, then stopped working and no one knew. And not Ibrance/Femara - a harsh combination for me, couldn't even eat, weak, tired, went off it still had even more cancer and larger and got better just from not being on them. Plus WBC went up from 1.8 to 5.6 even while on Xeloda.
So I would just use the Xeloda the best I could and get better. But we cannot go back with hindsight in our back pocket.
SLEEP - I like the raw hemp oil for sleeping. And melatonin.
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Stefanie, is the cannabis oil ingested or smoked? Will it work for sleeplessness, if ingested? How much do you use per night? and what ratio of content is it?
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I use cannibis oil for sleeping too. It's like a tincture I put under my tongue. For awhile I was taking a combo of a CB oil and a thc oil mixed for me at a 3:1 ratio but it still made me too stoned. Right now I'm doing just cbd oil and I like it better. Happy to share all the brands ifyou want. I also sometimes take melatonin 10mg.
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We will talk to the Oncologist about whether he would prescribe a cannabis product. Being in Canada, unfortunately we are likely limited to the products produced here. I see there is also a pharmaceutical called Sativex, that is thc and cbd. Anyone have any experience with it?
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Timothy, just be mindful of the ratios because there is significant study that THC is estrogenic so it needs to be in small amounts compared to CBD.
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Does anyone get itchy skin while on X? I've noticed that sometimes my skin itches like crazy....back, forearms, legs, etc.
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