All about Xeloda
Comments
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Gracie my Alk Phos was 96 yesterday, still in high normal range but NEVER been this high before. Maybe it's just something about X and not indicating progression of liver Mets. I'm only on my second cycle. My MO did not mention it. She just said labs are good. I'm mildly anemic but she did not mention it. She is going to wait until after 3rd cycle to have PET done.
I did get my Genomic testing from Tempes back. It shows ESR1 and GATA3, no surprise there. She says that explains why you didn't respond to AI. Yep. And boy did I suffer on those wicked AI. I can't tell you how much better I feel being off of them and on X only. Night and day difference.
I hope all of us respond to X. Congratulations Denny. 💞
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Thanks for the congrats ladies!
Thanks Goldie, for the info. I ordered the cream on Amazon for $13.05. I have asked about Silvadene since I had 2nd degree burns from rads. But my onc head nurse said it wouldn't help.
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Thanks Grannax! I'm glad you are doing so much better without the AI's! They do absolutely nothing for me either! Which is strange because I'm 93% ER+!
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Denny123: YAY on still being NED. Hope springs for us newly diagnosed! Wishing everyone the same!
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Gracie, when I was on gem/Carbo my liver counts were on the high end of normal, one week they were so high they wouldn't do chemo. My MO said it was possible that it was progression in my liver but more likely from the chemo. Turns out it was the chemo, looking back I can track the spikes in my liver counts to coincide with the carboplatin infusions.
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Denny, I had some silvadene too and was going to try that, but I can't find it. And how would that nurse know that it wouldn't work, has she tried it? This Atrac-tain has not cleared my feet up, but they are much better. And too it seems what helps one, doesn't necessarily work for someone else. I hope it helps you. Those footies you got, I like that they have little air holes in them. The ones I have, with the toes, they are a gel on the inside and no air vent, so I can only wear them for a few hours.
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Denny, Congratulations on the fantastic news!!! I hope that the Xeloda/Herceptin combination will keep you NED for a very long time!
Grannax, I also have developed an ESR1 mutation. There are a couple of oral SERDS (similar to Faslodex) in clinical trials that are more bioavailable than Faslodex and might work in patients with ESR1 mutations.
I took a 4-day break from urea cream. The skin on the bottoms of my feet became very thick, red and shiny, despite moisturizing frequently. It felt like the lotions couldn't penetrate. I went back to using a prescription 40% urea cream in the evening, followed by a short soak to wash it off and a very gentle exfoliation with a foot file. Then I apply a thick lotion (lately Weleda Skin Food, but others work too). My feet improved. The urea cream is definitely drying, but makes a big difference for me. The prescription urea cream from LaserX is much creamier than the one from Trinity. I'm sure that any cream with urea would help dissolve the thick skin. I'm sharing my experience in case someone else is experiencing thick, smooth, shiny, impermeable skin on their feet. If your feet naturally peel from Xeloda or crack from dryness, then urea cream might be counterproductive.
Thanks to everyone for the tips on foot coverings. It's hard to find a solution that isn't too hot and doesn't soak up the lotion.
I've been on Xeloda 3000mg/day for just over 6 months. I have a visible sternum met that appears to be growing, so I will have a PET/CT in two weeks. My recent tumor markers were flat, so hopefully if I do have progression, it won't be extensive. Other than the hand/foot syndrome, Xeloda has been a very tolerable drug for me.
I wish everyone a long, effective run on Xeloda with minimal side effects!
Theresa
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Goldie-my nurse said that Silvadene was for burns so had different ingredients that wouldn't help. I do hate to have stinky feet in the morning, but so far, I haven't had any raw areas. I did have an infected big toenail yesterday that had pus coming out from the cuticle at the bottom. I have been using Betadine on it, and it looks better today.
Theresa-when I first started on X, the skin on my feet all peeled off, and now the skin is tender. Did you just start on X?
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Denny, I do hope the Atrac-Tain helps you. I try to apply it at least twice a day and wear my hard plastic sandals when I can, so it's not absorbed into socks. It did take a couple of weeks before I noticed a difference.
Theresa, I'm not so sure it's the Urea causing the thickness, mine have been like that for a long time and I was not using Urea. I think it's a SE of Madame X. Just my 2 cents worth, as we are all different in how we react.
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Goldie-ugh to the hard plastic sandals. They hurt my feet. When I get it, I will use it at night.
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Grannax-- my All Phos rose steadily the first 4-5 months I was on Xeloda... My onc say it is not a common side effect, but there are reports in the literature of this happening in a small minority (2-3%) of patients, even if the AST/ALT stay normal (which mine did.) While sometimes elevations in Alk Phos can indicate bone mets, she said that it was more likely the medication causing it.
After about 5 months it stopped rising, although it stayed elevated (95-105) compared to my usual previous values (55-60.)I have stopped taking Xeloda due to progression in my peritoneum and bladder, and it already fell a bit after just 2 weeks off (down to 82.) I'm pretty confident it was Xeloda causing the rise.
I wouldn't worry too much unless it keeps rising steadily for months and months. Hope you get great results. I was only on it for 7 months and was never too thrilled with the response, although other than a bit of foot issues it was very easy. I had so much less fatigue than when I was on Ibrance. Now on to something else...
Seat to you and all the others on this thread,
Elizabeth
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Grannax-- my Alk Phos rose steadily the first 4-5 months I was on Xeloda... My onc say it is not a common side effect, but there are reports in the literature of this happening in a small minority (2-3%) of patients, even if the AST/ALT stay normal (which mine did.) While sometimes elevations in Alk Phos can indicate bone mets, she said that it was more likely the medication causing it.
After about 5 months it stopped rising, although it stayed elevated (95-105) compared to my usual previous values (55-60.)I have stopped taking Xeloda due to progression in my peritoneum and bladder, and it already fell a bit after just 2 weeks off (down to 82.) I'm pretty confident it was Xeloda causing the rise.
I wouldn't worry too much unless it keeps rising steadily for months and months. Hope you get great results. I was only on it for 7 months and was never too thrilled with the response, although other than a bit of foot issues it was very easy. I had so much less fatigue than when I was on Ibrance. Now on to something else...
May blessings come to you and all the others on this thread,
Elizabeth
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EV11 Thanks for the info. I'm not going to worry, just wait and see what PET shows in July.
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Hi all,
I just came from my onc. Last week had complete blood work. All numbers are fabulous. Alk Phos lower again for the second month in a row. Liver numbers good. WBC RBC good.
Now the bad news. For some strange reason my CA 27 29 jumped up from 1250 to 1590.
This is extremely puzzling to me and the doc wants to do another total blood work after my next cycle of X is finished in three weeks to see if this is an error or if it keeps rising. Then on to another Pet/CT.
Anyone ever had such a bizarre event?
Chats
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After I read your question I immediately looked to see if your Dx said ILC. My usual is normal numbers on labs even when something is going on. Tumor marker shows something brewing before scans do. Your onc’s plan seems like a good one.
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Shetland,
My diagnosis was ductal with lobular features. Not sure why it comes up as ILC on my page maybe I input it incorrectly. But I don't know what difference that makes in terms of TM's.
I am bummed.
Chats
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Chats, let’s hope that your TM goes down on your next test! I know it’s hard to wait, but you know what our oncs say: One lab could be a fluke. If we see a trend, then we’ll scan. Lowering Alk Phos is good! Maybe more cancer is dying and that’s what raised the TM. You have a PET-CT scheduled, so your onc is keeping a good eye on you.
My thought about TMs and ILC was that I think in my case the lobular mets at first don’t image well, so maybe that’s why my TMs indicate progression before the scan is definite. Also for me, my other labs will be in normal range even when there is progression. That is just how it works for me. So in my case we will scan based on TMs and not wait for other labs to be abnormal or for symptoms.
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Shetland,
I have the graphs of my blood work that I get from Cedars. I looked at how the TM's tracked with everything else and every single time the blood work numbers match what the TM's are telling us. For example when my CA 27 is high the alk phos is high and when the CA is low the alk phos tracks right along. So all I can say at this point is it's a complete mystery and it could be a mistake. It's just too odd for my usual trending.
I hope that it is a mistake because X is so easy for me.
I have been having a lot of low back pain and what seems to be a flare up of sciatica in my right hip and leg which I have had before, but I did a huge amount of heavy weeding and gardening and even some shovel work so it may be that I have overstressed. That's the only physical symptom I have at this point. I can only hope and pray that the mets have not progressed in the hip and back area and that is the cause.
I so wish I could get to one of those places like stable or NED or NEAD.
Chats
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Is the xeloda working at all on the week off, does anyone know
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Denny, I'm on my 9th cycle of Xeloda with 2 weeks on/1 week off, so just over 6 months. I dose reduced from 3500mg/day to 3000mg/day after the first cycle due to hand/foot syndrome in my feet. My feet don't peel on their own, which I think is why the 40% urea cream plus light sanding helps. When I skip the urea cream, the moisturizers don't seem to soak into my feet. They become red, shiny, hot and very sore.
Goldie, I think you are correct that the Xeloda is causing the thickness. In my case, I think the urea cream is working as an exfoliator to remove some of the dead skin. Congrats on your relatively long run on Xeloda!
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I can't imagine sanding my feet since they are so tender. So far the silicone socks seem to be working, but I have to put cotton socks over them since the heels slip off.
This won't be great when the weather gets warmer.
And the Betadine really helped my almost-infected big toenail.
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Gracie-the X does work on the week off, since that is when the SE's get worse.
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This might or might not have been discussed but here it goes. Seems like Adapalene used for treatment of skin acne could be useful in helping HFS from Xeloda.
Here's a scientific article that talks about that
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881915/
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Daniel, I think you just have to try it, that's the real "tell all".
Denny, did you get the new footies yet to try?
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In reply to Gracies question regarding how long does X stay in your body, I did some search and this is the info from Roche who makes the drug and NCBI regarding elimination time. I have been doing it wrong because I was taking it with food at the same time. Food reduces the rate of absorption so you are supposed to take it at the end of a meal or half an hour later. It looks like the stuff is eliminated quickly.
In other places I read that chemo drugs generally are eliminated rather quickly.
Also interesting info on the hand foot syndrome.
FROM ROCHE PAPER ON XELODA:
Metabolism and Excretion: Capecitabine reached peak blood levels in about 1.5 hours (Tmax) with peak 5-FU levels occurring slightly later, at 2 hours. Food reduced both the rate and extent of absorption of capecitabine with mean Cmax and AUC0-∞ decreased by 60% and 35%, respectively. The Cmax and AUC0-∞ of 5-FU were also reduced by food by 43% and 21%, respectively. Food delayed Tmax of both parent and 5-FU by 1.5 hours
DOSAGE AND ADMINISTRATION
The XELODA daily dose is given orally in two divided doses (approximately 12 hours apart) at the end of a meal. XELODA tablets should be swallowed with water.
Hand-and-Foot Syndrome: Hand-and-foot syndrome (palmar-plantar erythrodysesthesia or chemotherapy induced acral erythema) is characterized by the following: numbness, dysesthesia/paresthesia, tingling, painless or painful swelling, erythema, desquamation, blistering and severe pain. Grade 2 hand-and-foot syndrome is defined as painful erythema and swelling of the hands and/or feet and/or discomfort affecting the patient's activities of daily living. Grade 3 hand-and-foot syndrome is defined as moist desquamation, ulceration, blistering and severe pain of the hands and/or feet and/or severe discomfort that causes the patient to be unable to work or perform activities of daily living. If grade 2 or 3 hand-and-foot syndrome occurs, administration of XELODA should be interrupted until the event resolves or decreases in intensity to grade 1. Following grade 3 hand-and-foot syndrome, subsequent doses of XELODA should be decreased
Capecitabine and its metabolites are predominantly excreted in urine; 95.5% of administered capecitabine dose is recovered in urine. Fecal excretion is minimal (2.6%).
NCBI:
After oral administration of 1250 mg/m2, capecitabine is rapidly and extensively absorbed from the gastrointestinal tract [with a time to reach peak concentration (tmax) of 2 hours and peak plasma drug concentration (Cmax) of 3 to 4 mg/L] and has a relatively short elimination half-life (t(1/2))
Chats
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Thank you Chats for the explanation. I have been taking the X with meal too. Now I will wait until I finish food. I have taken X since November, 7 on 7 off, and starting from 4 /day( 500 mg 2+2) gradually increasing to 8/day. Up to now, luckily I still do not have HFS, may be a bit of the first stage symptom, numbness in three fingers). Just had bone/CT scan yesterday, will know the result when I meet with my Onc next Tuesday. Keep my fingers and toes crossed!
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Thanks Chats! I often take my morning dose with breakfast. Will be delaying it a bit now.
Daniel, Thanks for the adapalene link.
I just looked at many images of hand/foot syndrome. I saw images of red, shiny feet like mine and even more images of dry, peeling feet. It makes sense that treatments that help with hand/foot syndrome are not one-size-fits all. Thanks to everyone for sharing what works (and doesn't work) for them!
Unfortunately, my tumor markers have risen, so we're moving up my PET/CT. I'm not looking forward to changing treatment!
Best to everyone! Theresa
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Chatsworthgirl - Thanks for the information. I was told it was okay to take it during meal, and when I took it after, I got super nauseous and sick. Wondering if being able to take it and not get sick is worth the efficacy loss of taking it more in the meal. Not sure which is worse?!? I will try to take it closer to the end and maybe just take a few bites after.
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Goldie-I received the silicone slippers and they are working okay. I have to put socks over them, since the heels kept slipping off.
But this is the best that my feet have been for months....using Aquaphor only.
I also received the ointment that you told me about, but haven't used it yet.
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Theresa, there are pictures of my feet on page 313, and another members hands. https://community.breastcancer.org/forum/8/topics/772113?page=313#idx_9897
Denny, I wasn't sure if the new footies were the ones slipping off your heels. How long can you wear them? Mine don't slip off at all, but as I mentioned, I can only wear them for a few hours. Aquaphor is one I have not used. I put the actrec on first and then a little of reg. lotion on top of that. You should see the table beside my chair in the living room!!!
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