All about Xeloda
Comments
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After two weeks of being on the 7/7 schedule I finally got relief from the fatigue that had become nonstop. I'll definitely take fatigue over some of the other SEs that Xeloda can hand out but it had gotten bad enough that I wasn't getting much done during the day. My DH was making all the meals (except breakfast), along with keeping the house clean and me happy. It feels so good now to be able to do yardwork or housework or share in the cooking and cleaning.
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I am loving my Xeloda. I had a full body PET scan on tuesday and my MO called me last night with the results. I have no evidence of disease at this time in my liver. Totally unexpected as in March, I still had tumors. It is a wonder what an extra 3 months can do. I am doing a happy dance while holding my breath. Still in denial that I have reached NED status. I can't help but wait for the other shoe to drop. But for now I am so thankful that this drug is out there and will put up with any side effects if it means I can keep my cancer away.
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Leftfoot... Woo Hoo!
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far freaking out! left foot thats FANTASTIC!!!!
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Left foot,
Congratulations. I am really happy for you. NED forever.0 -
Left foot....that is fabulous news
Long live NED......
Karen x0 -
Leftfoot, that is great news indee, Congratulations!!!. I am also reporting that I am having great results with X. Diagnosed with mets in the liver, lungs, brain as well as bones in November 2012. Now 6 months later, no mets in my lungs, and only small 2 mets left in my liver. One particular met in my brain which was Leptomeningeal Mets has almost completely disappeared, and my tumour markers have dropped down to 60. I hope that this gives the others hope!! Heres hoping that we can stay on X for a long time and that it keeps working.
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Woo Hoo Mandy Moo!
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LEFTFOOT - YES - so very happy for you. Enjoy that report.
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Great to hear. I just started Xeloda this week. Completed radiation on Wednesday. My liver spot was gone in February, but is back with a couple of friends. Had a CT scan on Monday - that's when we discovered the liver friends. Having another PET on Saturday, and then off to a liver specialist next week.
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MamaPeg2, here's hoping that Xeloda starts working for you.
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I had almost no side effects in my second round but my breast became inflamed and tumours in the neck seemed to become bigger giving me a shooting nerve pain behind my left ear. My MO said to not give up on Xeloda. So, I am finishing my third round and it has been quite different. I have had all kinds of side effects -- HFS, sore tongue, nausea, big D. Although my breast is still inflamed, it is less painful; tumours in the neck are smaller plus I have less shooting pain. I am thinking that Xeloda is still working. I will have radiation to the breast and neck to help with pain after this round and then go back on Xeloda.
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Leftfoot & Mandy ... what fantastic news, I'm sooooo happy for you!!! So encouraging for the rest of us too.
In addition to hand/foot, I'm now getting lots of muscle cramps in calfs ... worse than the aromasin inhibitors ... anyone out there found anything that helps? Have to be careful of the magnesium cause can cause the Big D.
Also, my hairdresser noticed my scalp is pink. No pain, no itchiness, no hairloss - anyone had that or know what it means? Does that happen before you loose your hair? Didn't think hairloss was common on this med.
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SyrMom, I have noticed the occasional bad leg cramp but did not relate it to X. It is sooo painful, so I am hoping to hear from someone who may have an answer. As for losing your hair, I was told by the oncologist that some hair may fall out, but you wont go completely bald. I have not had any problems with my hair by the way.
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Mandymoo ... thank you. Wonder if a pink scalp is a precursor to hairloss? Or maybe similar to hand/foot syndrome but not painful cause not walking on my head!
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Hi Syrmom,
I am feeling joint pain and rash after I took the pill, still tolerable, terrible headache each morning, very tired during the day, will have scan in Aug, onc planned to change me to the red devil, a bit scare, anyone has experience with that.
Take care and hugs to all.0 -
maggiethecat ... why is onc planning to change your tx? How long on the Xeloda?
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SyrMom, I can identify with the cramps - mine can appear everywhere, sometimes in several places at once. Cramps typically have to do with calcium, magnesium & potassium balance. For me, I wonder if its actually the Xgeva that screws with this. Last time the cramps went wild my calcium had dropped quite a bit - its much more moderate when I use a well balanced supplement. In a pinch I'll do magnesium alone...pill form seems to cause me less aggravation than liquid does.
On an up note - my three month scans are sound (tumor size decreasing) so trying a little bit of a dose tweak downward - Enough side effects that I'm whining more than living...lol
So trucking along here - just ordered a new cream being used in hand/ foot syndrome trials - from a New Zealand supplier, called MEBO burn cream. (Moist, exposed, burn ointment). Its in common use in many parts of the world but newish to North America. So ladies for across the globe - share if you know about this product. I'm curious...
Also have learned that Vaseline (and other petroleum products), and lanolin are important go to product ingredients. They seal moisture in...which apparently is what needs to happen as prevention. Interesting that the most favored ointments here often have these ingredients. Hate the stuff but its universally recognized as providing the best moisture seal. Urea based cream within three minutes of getting out of the shower to catch moisture and sink it deep....blah... apparently I've been wasting cash on more expensive moisturizers that can't deliver either sealing or water attracting properties.
This is probably repetitive to those of you on this discussion - still getting my sea legs :-)
Sophie
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I had a pedicure on Wednesday -not sure what they did, cut to close ? Corner of my big toe is so sore can't stand to touch and if the sheet is pulled to tight across that area will cause pain; also red at the corner. Think I have a problem. Put on some anti-bacterial cream but thinking Epson salt bath might be better.
I have a pretty good tolerance for pain - this really hurts. Anyone hae anything similar?
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SophieJean ... thanks for the info ... pls. let us know how the new cream works, MEBO. I'm beginning to notice the same thing ... cramps all over the body. They are more painful than any cramps I've had before. I take calcium/magnesium; also on Xgeva. I have found a defin. connection to the Xeloda with increase in my symptoms, just don't know what to do to relieve them. Wakes me up a lot, that and the heels burning! Ugh. Have also noticed my skin is sensitive in random areas besides the feet/hand, weird.
Congratulations on the improved scans, very encouraging.
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Nan - that sounds horribly painful. I hope the soak helps. Is the edge of the nail sharp and cutting into the skin?
Maybe some tea tree oil? I hope you get some relief soon.0 -
Syr, Make sure your calcium levels are being checked in your bloodwork. It might be a interaction between Xgeva and Xeloda but calcium did a nose dive on me - perhaps with the GI upsets I wasn't absorbing enough calcium - without the tests it would have been missed - cramps quite mild again and more in the legs instead of all over now that my calcium is back up where it should be. At one point I've had Benadryll reconmmended for cramping and also quinine in club soda and/or baby gripe water (suggestions from my oncologist and my oncological pharmiscist respectively). I haven't tried either.
Naniam, I think one of the weirdest side effects of hand foot is the incredible increase in sensitivity of my toes and fingers (well that and the fact that my touch devices don't respond to my fingers tips anymore). I stubbed my toe recently and you would have heard me howl from blocks away. Same with fingers - small injuries feel like my digits are going through a meat grinder. I wonder if the pain sensors, or the tissures around them become inflamed and hyper responsive to even minimal trauma. That said, keep up the medicated ointments, and be gentle with that toe so the skin stays intact. Hope it settles down for you.
Sophie
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SophieJean, thanks for sharing ... yes, my calcium levels are checked regularly because of the Xgeva ... apparently, Xgeva can cause it to drop to dangerous levels. I tried the quinine water, couldn't stomach it, but someone mentioned allegra helps with the Xeloda, so I'm trying that. Who knows. Feel like I'm putting out fires all the time. Real concerned about scalp being red, haven't heard from anyone on that yet. I didn't realize until my hairdresser mentioned it when she was cutting my hair.
Naniam, I had that happen with a toe twice; before Xeloda. First time just kept it covered with antibacterial ointment and went away - it was towards end of toe. Second time they had actually dug into the cuticle too far towards middle of toe nail; couple months later lost the nail! I don't let them remove the calluses anymore since Xeloda - I do it myself, very gently after bathing if needs it. Have found the lotioning helps to eliminate the need to do it very often. I also tell them warm/cool water, not hot, since Xeloda.
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Naniam- YOu are describing my biggest SE of my toes. Unfortunately for me, I have found no solutions. I live with my two big toes in this condition and occassionally my toe next to the big toes. I can't wear socks so I have been in sandles for months. I do find that soaking them in hot water and gently cleaning them with Q tip helps. I then get out, use tea tree oil and finally put on an antibiotic ointment. I have learned to live with them, as they have never healed. It has been over 3 months. I have adapted. If it stays the same way and doesn't get better, you might have to do something else. I had my MO lower my dose of Xeloda by one pill a day and it seems to help with teh over all pain. My toes aren't completely healed but they are better.
sorry you are experiencing sore toes. take care
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SYRMom- my scalp is pink too. My hair has thinned and become brittle. This...I can deal with.
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Since I had the IM rod placement in the left femur, I can't reach my left foot to do my nails - thus the reason I started having a pedicure since starting Xeloda. This was the owner's dauhter, a teenager, and she was to aggressive and she won't be doing a pedicure for me again. We leave next Sunday for a week at the beach with the family - I hope I can find some relief and healing at that time.
I have been having some really hard calf cramps the last 2-3 weeks. My calcium level was low, so guess from what others are sharing, that is probably the cause of this new symptom. Within the last 3-4 days of a round of Xeloda is when my feet are the worst - the burning normally results in having an ice pack to put my feet on so I can get to sleep. I normally have more energy on Xeloda than I do the week off.
Thank goodness we can come here, talk and share; thankful not alone. Hugs -
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leftfoot ... fyi ... I was told hot water is a no no for the feet and hands, cool water only. Apparently, the heat causes the blood vessels to dilate and that increases the symptoms. I was also told to soak in cool/cold water following walks or exercise, then lotion up.
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OBXK, does your scalp stay pink or does it get better at times? Did it start getting pink before the thinning? Thanks for the info ...
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SyrMom - I just noticed it about a month ago. My girlfriend has a big mirror and cruel lighting in her guest bath. I look like a Barbie head! It doesn't hurt.
I just looked in my own bathroom mirror and noticed I have a pink eyeball. I read that Xeloda could cause conjunctivitis - I had a kid with this once, is it ointment or drops? Can't remember.
I am staying away from bathroom mirrors!0 -
OBXK, thanks ... I remember it being drops, had it myself as a kid.
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