All about Xeloda
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For you ladies who have been on Xeloda for awhile are you finding that your tumor marker gets to s number then sort of stays there? Mine were close to 300 but have been at 55 for nine weeks.
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Hello ladies,
Thanks for all the input about combining X with another chemo. As it turns out my onc no longer wants to continue the Taxotere. I'll ask him why when I see him on Tuesday but I think it's because of the all the side effects I'm having. Today is day 14 and I notice my feet are a little burn-y. They have been quite red for awhile. Hoping for minimal H/F and a long run on Xeloda alone.
Lisa
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My wife's tumor markers eventually plateaued after a year or more of xeloda. They fell around 30 percent per cycle, for quite a while, then it tapered off. Makes sense that as more of the cancer is killed off, the drops will slow as there is less left to kill off. Either some residual disease remains and gives off tumor markers, or residual disease plus other sources remain, so its not likely to drop to zero. Which tumor marker are you referring to? Some do originate from sources aside from cancer.
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Dianarose, that's what's happened to me too after a year on X. Dramatic monthly drops the first 7 cycles -- from 785 to 137 (CA27-29), and 87 to 17 for CEA. Now for the past 4 cycles, my CA27-29 has been hovering in the low 140's. I was worried when the drops first leveled off, but now I'm just embracing stability, hoping it may still drop a bit more at some point, but no longer as concerned as I was the first time there wasn't a significant decrease.
My SEs were particularly bad this past cycle, and for the first time actually worsened during my week off. So I am extending my current week off by a few days, hoping to get the HFS redness and swelling and pain under control.
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DLB, I often take an extra day or day and a half off. I figure, what can it really hurt!
I've been on X for 3 years. Here is what my TM's have done.
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Thanks so much for sharing your TM hx, Goldie! It's really interesting how they can bounce around on Xeloda. Mine have never done that in the past. They've either been on a distinct upward or downward trend. So it's really helpful to see how yours have behaved on X over a long time period!
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Thsnks for the responses on tumor marker numbers. I feel calmer now. Husband 11- I was referring to the CA27-29. That’s the only one my MO does.
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Hi Ladies,
Just finished my second round. Off for 7 days now.
All good, feeling not so bad. Its just.
Terrible feet and hand burning. So bad, I cant even walk without my Tylenol about every 2-4 hours. I creme my feet and hands a lot.
Any other suggestions on pain killers.
Carol
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Mamita, the usual remedy for bad HFS is either a few extra days off, a lower dose, or both.
I had a bad cycle in February. Feet were pretty bad at the end and even my hands got in the act. But this last cycle (I'm on day 17), nada. Feet and hands are fine. My bowels, not so much. Que pasa? Do others have good and bad cycles?
Starting the next cycle on Monday. . .must be #14 or so. I should go back and count it up.
Home for a month now before I head back on the road. Hope everyone is doing well!
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Ok, Friends,
Today was my first dose (2000 mgs. twice per day) of Madam X. I don’t know why I have such anxiety about taking this med. I have lathered up my hands and feet, so thank you all for your wisdom and guidance about the importance of that. I also remembered to take the meds with food, so hopefully I will be able to settle down and let this oral chemo do the job. My last scan showed progression; bone mets in my skull, neck, in bones behind my ribs, and my spine. I’m trying hard to stay calm and not allow the progression to mess with my mental health. Prayer, for me, is the only way to feel peace in the face of this disease.
Any other words of wisdom about taking this drug arewelcome.
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booboo1 I have no words of wisdom as I just finished my first round and am on my week off. I share your anxiety about this drug. Meditation is helping me settle down. I am feeling less fatigue I think.
It's helpful to know that cycles can be different. That makes me thing the effects aren't cumulative?
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Intothewood,
Thank you for your reply.
Did you have nausea? I just took a nausea med. It’snot really bad, but I notice that my throat is VERY dry (so I’m drinking a lot of fluids) and my stomach feels different. I am also on 30mgs. of Prednisone for my Sarcoidosis, so I didn’t expect Xeloda to curb my appetite. That’s not altogether a bad thing....I could stand to lose a few pounds!
How did you do your first week?
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Mamita49,
Have you tried Gabapentin? I take 300mg. before bedtime, and it not only helps me to sleep, but it also really helps with nerve pain. My doctor prescribed it when we thought I had neck issues (pain down the right arm and behind the upper rib boneturned out to be MBC), and while it’s not a strong opioid, it does work to dull the pain, so I stayed on it.
If you find something that helps, can you post and let us know? Many thanks, and good luck. Pain is not something we should have to endure.
Laurie
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Pajim,
Did you get this pain and burningeven after lathering up your hands and feet? No judgement here....just trying to stay ahead of what may come my way even if I do everything I’m supposed to. I am very sorry for any pain you have. Not fun, and not fair. What we have to deal with is bad enough. Blessings to you.
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This has probably already been asked and answered, so my apologies..but how long does it take to see or feel results from Xeloda?
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Hi Booboo. My oncologist indicated he expects a clinical response after two to three cycles so pretty quick. Hope Madame X is good to you. It wasn’t clearif it was working for me so I’ve moved on to Faslodex.
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Thanks so much for the reply, Sadieservant. I appreciate it. Yes, I am on my third drug (the last 2 didn’t work for me), so I also hope this one works
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Hi Booboo, my first week is hard to judge because I was already so fatigued from Taxotere. I was wiped out the first week, less so the second week and my energy was good yesterday! I do have a slight sense of nausea and fullness in my throat. My onc refers to it as "dyspesia" I first had it with Doxil and it responded well to Prilosec which I continued when I started Taxotere. It doesn't seem to be working with Xeloda. I see my dr tomorrow and will ask about a dose increase. It's very bothersome but I don't want to take anti-nausea meds because I'm already tired. My feet were sore the last day of taking the med but nothing since.
I hope this drug works well for us!
Lisa
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Intothewoods,
That’s exactly how I would describe what I’m experiencing (dyspesia). Have to look that one up. I’m on Day 2 and feel a bit more adjusted to the meds, so I’m with you, Lisa. Here’s hoping we are both able to achieve NED at some point soon!
Take care.
Lauri
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Lauri, you're on a pretty high dose of X so you should expect some trouble. I'm on a little more than half what you're taking. My TMs started down right away. We only recently did a scan [after 8 months] and it's the same as the last scan in April. So whilst the tumor markers are down the scans show stable. That's OK with me as it doesn't cause me pain.
Normally the SEs are cumulative so I'm surprised my hands and feet don't hurt this month. No complaints.
What I get is sort of a burning sensation in the soles of my feet. Like the kind you get from overuse. Occasionally I get blisters on the bottom of my toes. My onc says it's not doing permanent damage. Normally putting my feet up solves the problem. So if they hurt at night they're fine in the morning. The first couple of cycles I'd have that in the evenings after taking the meds. Then it went away unless I walked too far. Now the 'walked too far' is a lot shorter than it used to be.
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Pajim,
Yup, agree. I even made the nurse go and double-check with my onc to be sure the dose wasn’t recorded incorrectly. Nope. She’s hitting me hard because most of my treatments last year failed, and she wants to get the tumors under control without subjecting me to IV chemo again right now. So I’m expecting some discomfort.
But I’m prepared. I bought all of the goodies (Working Hands, Feet) and am following all of the great advice from everyone here. I’m hoping that we both adjust to X and see many of the SE diminish over time. It sounds like that’s what you are experiencing. I sure hope so.
Sending blessings and prayers your way, Pajim.
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Hi gals-been on Xeloda for 4 days. Doing fine-standing by for any SE's. Using 10% urea lotion on hands and feet.
Big hug for all, may the force be with us....MJH
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is the urea cream otc or prescription?
My feet are a major disaster , dark red zaround my nails and toes, i know they will start peeling
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proudtospin- I use Eucerin advanced repair. It has Urea in it and I get it at Walmart. It’s in a white jar with a red cover.
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Proud-I ordered "Udderly Smooth" cream from Amazon.
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Hello ladies this is the first time for me posting on this page been on Xeloda for five cycles . I know some of you from the bone mets thread Hallo😊.
So the reason I’m posting is I’ve been smearing tons of cream ( underlying smooth) on my hands and feet for months and though it does help with dryness I still have pain towards the end of the cycle to walk. I’ve found a new thing that is helping me so much I wanted to share it here.
A friend told me about Henna I make a paste with a little water and some lemon juice just a bit of the latter. Then smear it on hands and feet and leave on for half an hour. It has made a huge difference for me I have Trump hands and feet now ( very orange) but it helps take the pain away. Lots of plastic bags and gloves are a definite requirement. Hope this helps you ladies, also just google Xeloda and henna😊
Wendy
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looks like I am coming back to this group. Hoping it is as good to me this time around as it was the first 5 years I was on it.
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Welcome back, Leftfootforward. Glad to have you back. I am hoping this drug works for me, and would be over the moon if I could get 5 years from it. Fingers crossed
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Chiming in on the henna... I just bought some on Amazon for the same reason, so really happy to hear how well it's working for Wendy. I haven't done mine yet -- going to wait a few days until my HFS acts up a bit more this cycle -- but I was impressed with the research I found on it. A Google search, as Wendy suggested, will produce not only "how to" pages, but some actual research.
I also did not know until today that antacids are not good to take w/Xeloda. I use a natural one, so not sure if it's the same as TUMS or the more potent OTC ones, and not even sure what the conflicting ingredient is -- calcium or something else??? -- but I can't believe my onc didn't mention this as a possible problem.
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Hi Ladies,
Only first time 10 years ago, I had side effects. Never ever since then, flying through so many treatments. But...
This Madame X has but me down on my knees. On a scale 1-10, my pain was 15 in my feet. And thats an understatement.
I went to see Onc Nurse today. And have an appointm. next week with my Onc.
I was suppose to start back, after break ( this is only my second cycle) on Friday. Nurse said NOT to start, probably doc will lower dose.
I have a question.
I was so far on 3600 mg. 5 pills in the morning, 5 in the evening. Each "take-in" was 1800 mg.
It seems a lot.
Any advice. If he lowers the dose, will it still be effective. Does lower dose mean, less burning in feet ?
Thanks for your input
Carol
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