All about Xeloda
Comments
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Hang in there Chatter, it changes. Sometimes soaking my feet in Epsom salts eased the burning and redness. After a couple weeks the skin started peeling. Then it eased and right now it's not nearly as bad. My cuticles keep drying out but Sally Hansen Problem Cuticle Remover seems to work best for me.
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New side effect, very painful labia when I urinate. Just tried olive oil but no immediate effect. Any tips? Very sick last 36 hrs, skipping last 3 doses.
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Chickadee, thank you for tip re Epsom salts.
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chatter - Not aware of this being common SE. I think you should check it out with your medical team as may be a UTI. I had one a few weeks ago.
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If its like cystitis, pure cranberry juice can help balance the ph and it doesn't hurt so much. If it goes away on its own, good, if not you may need an antibiotic to go with it. So sorry. That hurts like the dickens.
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I ended up talking to doctor in middle of night. He figured a UTI. I'm too sick to go do a urine test. Drank more water and less painful today. Feel like I want to die. Can't eat, diarrhea, empty vomiting, hands/feet hurt, mouth hurts, vagina hurts. Two days off XelOda. Hoping things ease soon. Not sure I can get through another round of this.
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Chatter.....this to will pass. I know you are miserable and so sorry you've been overwhelmed with so many nasty problems at once. Your onc can lower the dose. I've done best on a 7/7 schedule. The initial 14 days really sucked.
Wishing you relief soon.0 -
I stopped Xeloda and Tykerb 10 days ago, due to severe side effects, and slight progression.
However, I feel somewhat better, I am not feeling like I thought I would.
I have at least 10 splits on each foot, I used udder cream every day, appetite is still almost nonexistent, I lost 27 lbs, constipated, heart burn, abdominal pain which is worse at night. Shortness of breath, and horribly dry skin, the rash has cleared up, dry mouth, fatigue and I take at least a 2 hour nap every day.
I meet with the onc next week, to figure what to try next, I had great results with TCH and the side effects were more tolerable.
Any suggestions or advice will be appreciated on how to handle the SE's from Xeloda and Tykerb, especially any idea of how long it takes to leave your system, I am drinking a ton of liquids.
Thanks,
Marsha0 -
Another good blood test. We've agreed to add thirty days to the scan schedule. Yea!
Thank you Madame X for this long run. Planning for more.0 -
Congrats chick!!!
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Hi ladies,
I have just started xeloda and am wondering if I can still do yoga? Will yoga aggravate the hand and foot thing? I am only on the first round and haven't had too many side effects. But I can feel the tingling and a tiny bit of foot soreness. Does hand and foot come and go? Or does it get progressively worse? Thanks for any input you have!0 -
Hi Claudine,
Thanks for asking the question. I have been toying with the idea of hot yoga too.
How are you feeling? How are your energy levels?0 -
For me it ramped up slowly at first and for the summer it remained somewhat annoying. Mostly the dry cuticles and bottom of my feet. Then as the weather cooled it has subsided and is barely noticeable. Moisturizing my cuticles and my toes is still a challenge. It like my skin just drinks this stuff up. My fingertips always felt like I had burns them. You know like when you grab a hot handle or touch the stove and it takes about a week for the numb feeling on your skin to go away. In this case it lasted most of the summer.
Early on I found a good soak with warm water and Epsom salts helped with the tingling and redness as well as softening my feet for the moisturizing.0 -
Hi all,
I am not Stage IV and am just popping in as I AM a clinical trial coordinator who gives advice to hospitals on what their patients on drugs that cause PPE (hand/foot) should be doing to minimise or prevent the condition. I thought these might be helpful for you guys...
1. Before starting treatment we recommend a pedicure to get rid of dry skin and cuticles. This is because PPE has been shown to be worse in areas of dry and calloused skin. GET RID of as much of these areas as you can!
2. Moisturise, moisturise, moisturise - it helps to soften hardened areas - enough said?
3. Wear soft cotton gloves when doing anything manual. Do this BEFORE thecondition sets in.
4. Avoid anything that means soaking your hands in water. Dishwashing, clothes washing should be avoided.
5. Avoid extremes of temperature (cold/hot). This can be difficult for those living in extreme temp areas I know :-/
Hope this helps. Thoughts with you all having to deal with these SEs...
Jenn0 -
Hi again,
Jenn- thanks for the great input! What are your thoughts on doing yoga? I don't care for hot yoga and I think the hot temps would be bad. But what about restorative, etc?
Keeping faith- I feel great! I have high energy and aside from some foot soreness nothing is bothering me at all. I sure hope it stays that way! I could probably use a few more Xanax though
-Claudine0 -
Claudine - I don't think there's anything wrong with doing yoga at all. Just maybe wear those lovely soft yoga footlets/shoes? You might also want to be mindful of maintaining cleanliness at whatever centre you use. Maybe wait and have a shower at home rather than use the shared showers...
I don't think that hot yoga would be very advisable since that would be going to a temperature extreme and would encourage more sweating, and therefore potentially more chemo leakage in the hands and feet.
Popping back out now :-)
Jenn0 -
Chatter and Mmom - so sorry you are having/had such awful side effects. I just finished my 3rd round. I can't believe I have to take it again already on Monday. My hands and feet are fine - just my hands are more dry than normal. Doing dishes 100 times when we had family over for Xmas really dried them out. But they're better now. I'm going to have to get myself those Playtex gloves for dishwashing. I get a few transient tiny mouth sores on the inside of my cheeks. But if I don't mess with them, they seem to heal on their own within a few days.
The fatigue is getting me down. All I can think of is when is my next napping opportunity. And when I wake up, I still feel like crap. Like I didn't sleep at all. Already mentioned Ritalin to the doc, and he basically rolled his eyes at me. I only asked him because I've read so many others on the boards say it helps them. Ah well - all this typing is making me tired...
LL
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chatter - Hope you're feeling better and have ABs to sort out the infection.
Marsha - I had to have an extra 2 weeks off Xeloda after round 6 and felt much better by the time I started cycle 7.
Chickadee - great news on the scans. I find moisturisers tend to just sit on the skin for a few minutes (getting lots of smudges on anything I touch) and then disappear as if I hadn't used anything at all.
Claudine - I'm sure yoga would be fine and your onc would probably encourage you to be active.
Jenn - thanks for the tips. Just need to find someone to do my dishes for me now.
Liz - the fatigue can be a real drag but rest when you feel you need to.
I think I'll probably be changing treatment plans soon as noticed a bit of progression in my skin mets. Onc on holiday until Monday but SBCN going to speak to her about bringing forward my next appt, since not due to see her until 21 January.
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Gail - sorry to hear that you're having progression on the skin mets. It's always something, isn't it. I hope that you get an appt. soon, and that you get a treatment plan that you're comfortable with. Thoughts are with you...
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Well, saw my onc today. She said she could feel my lump more than in the past and while she didn't say she wanted to see me in three weeks rather my standard six, she did say she "wanted to keep an eye" on the lump. She didn't move my scans forward - I'm due in February anyway - but "keeping an eye" freaked me out. I love being an X diva!!!
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So sorry Dormouse72. Hugs -
LL
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Hang in there Dormouse. My onc scared me in Oct when the blood test showed lots of bad numbers. She started discussing the next step if Novembers number continued.
Thank heavens they didn't.
I hope the same for you. An anomaly that goes away.0 -
She did say it was something that soetimes happened - that you can feel the lump more at some times than others. She didn't say it felt bigger, just that she could feel it. Last May she said she had a hard time finding it and scans showed it was stable so I'm hoping it's just that I'm retaining fluid or something or it's just a weird thing. Vitamin X still has at least six more weeks to work it's magic. Let's go X!!!
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Hang in there dormouse.....it's such a freakin' ride. ::Shaking head::
My bloodwork jumped 400 points yesterday....Onc isn't panic stricken, but said if number in 3 weeks aren't lower, he wants to scan right away. So, back to 3 weeks with the "pit in the stomach" Chick your post made me feel some better....
Hugs to all
Robin
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Have not had mouth sores, but the tongue and lips tingle like my hands and feet. Got bad over the holidays with drinking hot liquids and even sprite - they all irritated the tongue. Going to take an additional week off before starting xeloda again. Hope this works - will get markers done again next blood work.
I too have the little brown spots like freckles showing up on arms, neck and face.
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Dormouse - hope the lump is not getting bigger. I'm sure your onc would see you a bit sooner if she was really worried or would change your treatment.
Robin - hope your TMs go back down. They can be unreliable but sounds like your onc is on the ball with the scans if not.
Saskie - good luck with TMs. Hope the extra week off helps you.
I've managed to bring my next onc appt forward to Friday, so will see if treatment plan is changing then.
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I am starting my third round of Xeloda, and my eyes are watering continuously. I mentioned this to my onc, but forgot what drops I have to get from the chemist. I think he said Murine, but it might have been Vysine. Can anyone enlighten me and tell me what they use.
Cheers
Mandy
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Mandy - my eyes are OK on Xeloda but had problems on FEC-T and my chemo unit gave my eyedrops. I think they were called hypermellose.
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The third round was the trouble round for me. Then all se went away. Hopefully this will happen to you also.
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Thank you Gail and Frapp, the local breast nurse is coming around today to introduce herself, so I might check with her. Frapp, I hope you are right with se going away after the third round. I have had 2 different lots of se and wondering what se I will get this time. Xeloda is starting to work after being on AI since May last year and my tumor markers kept going up every month. Then in November last year, I was hospitalised with Pleural effustion and tests revealed that the mets had spread not only to my bones (since May 2012) but also lungs, liver and brain. I was so relieved to see the onc last Tuesday and being told tumor markers have started to finally drop!!!! I will put up with any se, but if they happen to go away next time - wahoo!!! Meanwhile, water is just streaming from my face whilst typing this... lol...
Cheers
Mandy
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