All about Xeloda
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Hi all,
Posting back in this thread after a while. My wife's liver Mets progressed while on Xeloda 3000mg a day. She had around 10+ spots on her liver and now almost all are gone but one is larger and there is a new one.
Her MO is recommending moving to a higher dose of 4300mg/day and see what happens.
Is there anyone here who progressed on a certain dose and then got better results on a higher dose?
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Just reporting in. I'm on my 32nd round of Xeloda at a dosage of 2000 mg per day, 14 on and 7 off. I have had no progression and have had some improvement on spots on my spine. I have no side effects that I notice.
I don't take any supplements nor do I limit anything in my diet. I use milk products since I'm not allergic to lactose. No problems.
Wait, I do take Vitamins D and C. Other than that, no supplements. I do take prescribed blood pressure and cholesterol meds.
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Amy,
You may want to switch over to medical cannabis to keep your cancer at bay once you're sick and tired of X. I've read positive anecdotal things about MMJ. You'll want to stick with high CBD cannabis oil (the THC stuff makes you high and can feed some cancers, btw). Most doctors won't discuss any of this with you because they don't want to jeopardize their medical licenses (drs are licensed by both the state and the Fed govt).
In the research I've done, some people have also been able to attain complete, spontaneous remission, but not without a price. They gave up the usual American diet and stuck to a raw and/or clean diet with lots of fresh fruit and vegetables. Many gave up all dairy and wheat, and others kept organic, free range eggs and chicken in their diets along with WILD fish. They juiced daily.
Most importantly, they gave up ALL sugar and simple carbs. No white rice or white pasta. Only WHOLE GRAIN, sprouted grain breads, and pastas, brown rice, and sweet potatoes (no white potatoes). So bye bye M & M's, Twinkies, Cheetos and Krispy Kreme donuts!
They also removed TOXIC people from their lives and they left toxic jobs and devoted themselves to prayer, meditation, yoga, etc.
This is all well and good if you can AFFORD to do this, but most people cannot.
I certainly can't afford to do this on the fractional pittance I get from SSDI.
L
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Well, on day 14 of Cycle 2, my feet crapped out on me. Man do they hurt. Might have had something to do with hiking a mile pulling luggage. Was wearing good socks and sneakers and had had no indication of trouble before this (yesterday was fine, just a little burning). Sigh. That'll teach me.
Since I'm done with the cycle, how long before my feet get better? Any idea on that? I'm away from home and some walking must be done. Guess a lot less than I planned LOL.
Winningsofar, I want to be you when I grow up.
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AmyQ, I believe my onc is planning to keep me on X until it stops working or there are intolerable side effects. Fortunately it is easy to tweak the dose and schedule.
Winning, that would be coming up on two years with X, right? Awesome.
Pajim, ugh, sorry to hear about your feet. Yeah, the extra weight of the luggage was probably not a good thing. I'm on cycle three and I keep looking at my feet.
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Pajim, everyone is different. Sometimes I notice my hfs is actually worse on my off week as my body is trying to clear the X out of my system. That's usual when I get the mouth sores.
Hope your feet get better this week. Keep putting cream on them even if they look ok. This can get ahead of you really fast...I know that from being on X for over a year now.
Try to keep your feet cool. Use ice packs wrapped in a light cloth. When my feet are particularly bad, I even sponge bathe and wash my hair in the sink so I don’t have to stand in a hot water shower. People say shower with tepid water, but that just doesn't do it for me. I don’t feel clean.
I hiked more than I should have a couple of weeks ago, so I know how you feel. I only went about a half mile farther than I normally go, but I had red, nasty sore spots on my toes. And my toenails bled...that's the first time thaf ever happened.
I just keep telling myself, if this is what X is doing to my hands and feet, just think what it's doing to the cancerous tumors!
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Hi, all! I don't contribute much to this thread but I sure do benefit from it - thanks to all of you for all you share. I've finally got two items I can maybe add to:
- Re increasing Xeloda dosage: When I had a scan showing my mets were mostly (but not completely) responding to X, my onc bumped me from 3,500 to 4,000 a day (7 days on/off) and it did seem to make a difference. My TMs went down again and the latest scan showed a lot of improvement. Unfortunately I still have 2 stubborn spots, but we're staying with X and doing some radiation in one of those areas (in a cervical vertebrae. That's what we did earlier and had a good response. I have yet to get to NED, though.
- Re skin changes: I noticed some freckles changing and my onc's PA said that's common. Evidently 5-FU (which X converts to) is also used for skin cancer, as it has effects on skin cells. I'm not sure how exactly that ties in to sun sensitivity and other skin SEs, but I'm guessing it's all related.
Thanks again for all the support and good cheer on this thread!
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Yes, seagan, I have freckles like crazy all over my face now. Xeloda makes one sensitive to the sun. Even if I put sun screen on, it still feels like the sun is burning into my skin, so I went to Kohls and bought some inexpensive, long sleeve cotton shirts. If I'm going to be oudoors for more than 5 mins, i wear a hat to cover my face.
I noticed more freckles on my hands too, even tho I try to wear gloves outside. 😜
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Thanks Seagan. Like you I have been contributing less to this thread lately but I also benefit greatly from here. Your experience with increased dose of Xeloda gives me hope.
Let me take this opportunity to state how my wife has been doing recently. Mighty be useful information for some.
Her cancer progressed to her liver around January of this year. Some 10 spots were found, mostly tiny but a couple measuring between 1-2 cm. This was preceded by gradual increase in her TM. She was on Ibrance + Letrozole at that time.
The doctors switched her to Xeloda, 3000mg /day, 2 weeks on 1 week off. Her TM started dropping and a repeat scan after 2 weeks showed shrinking spots.
A repeat scan 2 months after that showed all but one spot disappeared. But that one spot increased in size from 1.2 to 1,6 cm. Also the TM stopped dropping. In addition now there was a new 1cm spot. So our MO at Stanford declared progression and advised to stop Xeloda.
At this time we switched or MO from Stanford to UCSF. Our MO at UCSF said let's try a higher dose of Xeloda (4300mg) and on a one week on and one week off schedule for 3 weeks. My wife just started that and we will see what happens.
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letmywifelive, I hope the higher dose works out.
As for me I'm calling myself all kinds of idiot. Blisters -- one on each foot. I've had my feet up 18 hours and do feel better but now the blisters are defined. Which means they'll heal. I had this happen two years ago wearing sandals for the first time in summer. Took a few days but cushy shoes enabled me to keep on. Not sure what affect X will have on that.
I'm off to get slaughtered at the bridge table by a group of young Singaporeans. We can beat these guys! (Yeah, right)
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no green tea. Period. Teaching Professor order...
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Kaption, yes it does. So if your heart is sensitive you should consult with a cardiologist. X is a big gun.
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dear AmyQ,
İf a machine is working, don't touch it. Tried and true.
Great chemo to keep hair. Trust me. The nasty SEs are worth bearing.
Now I am on 2000mg/day plus Taxotere... no hair for the third time.. wish didn't need Taxotruck.. anyway... hope your great results last loooooooooooooong
Ebru
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I've read case studies where changes in the dosing regimen for xeloda have restored its effectiveness, both changing from 2 weeks on, one week off to 7 days on 7 off, and vice versa. Even radically different regimens, like 500 mg 3x daily, no break whatsoever, have worked from some.
As for the end game question, my wife has now switched from xeloda to palbociclib and letrozole after more than a year on xeloda. The xeloda has been quite effective, but she is wanting a break from it, and although its risky, she is trying out an antihormonal approach. She is now into her 2nd cycle of 28 days on palbo / letrozole, and she is feeling much better than on xeloda. Hopefully it keeps the cancer suppressed as well as xeloda did.
I still wonder if the oil of oregano played a role in her success with xeloda. When she quit the oil, her tumor markers stopped moving, when she went back on it, they went down again. Could be just coincidence, could be harmful if taken with any drugs (she took it only during her time off), could even be harmful in and of itself, yet she got good results, Perhaps even stellar results.
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Amy, I went to my MO this morning for a check up. I asked him that specific question. He told me I will stay on this as long as there is no progression or if side effects become so bad that you can't take it any longer. I'm opting to continue it for the long haul for as long as it works. I don't have side effects so I'm hoping to get a good run. Maybethis will help you make your decision.
Anita
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photo girl,
I was on tykerb for 3+ years before there was a progression When the se's got overwhelming , my onc let me take a break for a week or so So a different drug, but maybe your onc would allow that. I don't think there is any evidence based research - but I was so very grateful
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Husband11, I can think of one other reason the oil or oregano suppressed tumor markers. Maybe it suppresses the tumor cells in the blood. With or without having an effect on the tumors in the liver.
In any case I hope your wife has an easy ride on letroxzole/Ibrance. I thought it was easy -- the hair thinning was annoying but I wasn't tired at all.
My onc is a believer in a week off for vacation, or for whenever one needs to feel good (like if there's a family wedding or the like). Maybe feeling extra crappy is a good reason. . .
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Question... I had scans yesterday, my first since starting X in March of this year. The reports just came up on-line and look stable overall (YaY!!!), although I will be sending the imaging to UCLA for review as well. (I had scans locally this time, because the 3+ hr. drive each way to UCLA can be more stressing than the actual scans. Also, whoever read my bone scan this time for some reason didn't have the Feb. imaging I'd left with them for comparison -- something I've already pointed out to them needs to done.) Anyway... the report says no change in 2 tiny lesions (7mm & 5mm) on my liver that first appeared on my March scans. A third lesion (4mm) is noted as suspected to be a cyst. So my question is... If they were mets, wouldn't those lesions have either reacted to X or grown? The fact that they are unchanged makes me question if they're actually mets.
I'm also wondering... since my TMs have dropped from the 700s to the 300s, why isn't this reflected somewhere as improvement in my disease? It just seems odd that you can have a 50% drop in TMs, yet still have just stable disease on imaging -- although the lack of any improvement noted might be b'cuz they did not compare yesterday's bone scan to the one 4 mos. ago, but to something they had from 2014, when I was first dx'd.
Anyway... just some things I'm trying to understand...
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dlb823 - the best way to be sure is to follow up with a PET/CT if you can manage insurance to pay for it. The fact that your TM is falling and disease looks stable is great but only a PET can confirm if the new spot is Cyst or not.
Typically just TM by itself is not considered by medical profession as being deterministic enough for diagnosing disease progression. So they never mention it on their report but the doctors who use TM, use it as a supplementary information.
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dlb and let, my MO refuses to look at tumor markers, especially for her patients like me with high tumor loads. She says they're too inconsistent. If you only have one met or one area of mets, maybe worth measuring, but if you have mets in several bone groups, multiple organs and also muscle tissue like me, it's worthless.
Any one of my areas could go bazinga at any time, and the only way to know WHICH one and by HOW MUCH is to do a scan. Different areas will be targeted different ways, according to scan results. Liver might be treated with Y90 or spine might be treated with rads, etc.
So on the bright side (if there is one in all this mess), at least I don't have to stress about tumor markers. Scanxiety is more than enuf to deal with.
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My wife's oncologist has absolute proof via a recent PET scan that Xeloda is working. Some small mets to spine are completely gone and the larger mets have been significantly reduced in size and SUV. Yet, her tumor markers have continued to rise. Had a recent tumor marker test and if they don't show a significant drop he will figure they are unreliable for my wife and discount them.
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The TM really is predictive for some people and not for other. For my wife even with high tumor load, it is very very predictive. Even a 10 pt. rise indicates progression somewhere. However, there are so many people for whom it really means nothing. So one really has to know if TMs are prognostic by recording the trend and matching it with scan results over the same time period.
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Hi, Deanna. I'm very glad to hear that things sound pretty stable for you. Regarding the liver lesions that have not changed size, did you have a PET scan (as opposed to CT) of them at any time? As far as your TMs dropping but scans not showing much difference, one thing I can say from my experience -- and I don't know how many others might be similar -- is that by following my PET/CTs and TMs over the last three years, my onc and I can see that my TMs can predict what the scan will show later. In other words, first we see TM changes, then it can be some time later that corresponding changes definitively show on scans. Thus, when I had a recent good TM drop, my onc said she expects my next scan to show improvement, even though a recent CT with contrast did not. (Too bad it was not a PET but the IR wanted a CT.) I agree that they need to compare the new scan to the next most recent scan, and also that the UCLA radiologist needs to weigh in.
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Did anybody feel a big change in fatigue around the third Xeloda cycle? I'm on my third X cycle now and unlike the previous ones, I feel very tired. The kind of tired when you take a deep breath and sigh, and you feel that ragged tired feeling. Even though you just got a decent night's sleep. The thought of having to make a long drive almost makes me cry. My friends say I look tired. I'm hoping this is just a result of temporarily taking a second drug for a minor problem, and not how it's going to be with X.
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Deanna, I'm thrilled for you.
Lita, Ebru, Shetland Pony & Anita, Thank you for your responses to my question. It's not what I hoped to hear, but it makes sense. I did like hearing that mixing up the dosing can be beneficial even if a patient has had some progression. I see my one on Friday and will mention to her I took myself off of 2 weeks on 1 off to 7 on and 7 off this month of July. I know painful feet, runny, itchy eyes and mouth sores are better than death but there are days I just want to throw in the towel. I do think 7 on 7 off is helping though. I'm hoping she agrees.
Lita I should find out more about the cannabis you mentioned. I'll PM you.
Take Care -
Amy
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Shetland, make no mistake, Xeloda is HEAVY DUTY stuff. My MO had no qualms putting me on it even with my high tumor load. She knew it would kick butt for a while, but it comes with heavy duty SE's, too. Not everyone gets all of them, but at some point or another, most people DO get the fatigue as the body has to deal with the ever-increasing toxicity and lowered blood cell counts.
As i wrote in a much earlier post, my red and white cells are the lowest they've ever been, contributing to my fatigue. MO says if mine drop much lower, it will be transfusion time. I'm getting very dizzy these days too, which is all part of it.
Get a blood test to see where you're at.
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In my case, TMs have been preedictive of my condition so far, so we have look at them each month still.. but I had been told it would be known in time, whether we should rely on them or not.. well, after 5+ years, we do rely on the TMs .. time tells, no harm in checking them out the first couple of years..
I have been told by RO that micro mets may not show on MRI scans.. PET is more reliable. Yet, I have had just one PET so far. That was during dx. We continue with TMs, ultrasound & MRI (rare) scans.. MO agrees no additional radiation needed at this point.. and I am determined not to chase the sizes and numbers of available and new mets and their positions.. Mentally no help knowing that much detail and believe focusing on my great yellow roses instead is more healing.
Well, I let MO do her job and do mine.. that is keep enjoying each day! ))))Hugs
Ebr
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Yes, Ebr, that's the way to go. Love your yellow roses. I just lost my yellow rose bush last year to moles. They love to eat the roots, and once the root system goes, the bush dies off. Otherwise the bush was very healthy...no aphids or rust, etc., 🙁. I lost my apricot Lucille Ball rose that way, too. I have 18 bushes left, so I'm not going to replace them, DH hates garedening, so I will have to leave funds behind specifically targeted for the care of the rest of my rose bushes.
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Learned that I can't have coffee even during my OFF cycle weeks anymore now...sigh 😣. I used to be able to have a decaf latte during the middle of my off week with a snack, and then I tried it today, and had another horrible stomach ache (I thought it was just a fluke the first time). Even decaf has acid, and that can wreak havoc on sensitive stomachs.
Chalk it up to the damage that Xeloda eventually does to one's digestive tract. I've been on X for over a year, so I guess it's to be expected at this point.
Anyone else have to give up some of their favorite foods/beverages?
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Hi Lita- was reading about your mole issues. We had them a few years ago. Hubby found these little solar devices you put in the ground. They let out a high pitch noise every five minutes or so. We can barely hear it but the moles can and they don't like it. Haven't had any issues since. Next time we get the catalog I will tell you the name of it.
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