All about Xeloda
Comments
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Hi, KT. I have bone mets in pelvis and spine. When I started Xeloda, I could not walk without a walker. After about 3 cycles (14 on 7 off), I was able to get by with a cane and pain was much improved. My TM 13-5 came down with each cycle. All the best.
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Hi KT - after 3 cycles the spots on my brain are smaller, I don't have new tumor markers yet, will get them tomorrow, but my radiation oncologist said that she believes the xeloda is working in my brain! I did get another week off when I was sick and found my fatigue pretty much disappeared which was nice, unfortunately it is back again.
On swollen ankles, my NP said to reduce salt and try to keep my feet elevated, another NP said to get them above my heart. I've been drinking a lot of gatorade which I noticed has a lot of sodium so i'll also reduce that.
I hope you all feel good today! Clare
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KT1966 - we saw improvement in the tumor markers for me pretty much immediately. I'm going to say after 1st cycle. And they kept going down from there.
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Ah - one more thing to add...by the time I was diagnosed, I was having a hard time breathing, and wheezing and actual pain that was coming from the area of my largest chest tumor. All that STOPPED after about 2-3 cycles of Xeloda. Xeloda shrunk that tumor a bit, and really helped the symptoms.
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I started my third cycle today I hope I feel better. I feel tired still feet cold back achs but that has to also do with anemia. Which I hope goes back to normal soon. I just don't feel like myself anymore for about a month know. I still work full time and tend to household chores. I have some good moments but mostly bad ones. I hope things get better I am so tired of complaining. I usually don't complain so much but the xeloda is really hard on me. I never had so much side affects with Femara, faslodex and afintor. I was a pro with that and was able to do everything. Zelda is a different beast.
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Thanks girls. It sounds like its really working for you hansiam, Clare & Liz
I hope you start feeling better soon Stella. Xeloda certainly hits you more than the hormonal treatments.
The fatigue is a pain isn't it? I find I have to pace myself a lot more. I find it frustrating that I can't do as much as usual- especially when I have a lot to do at the mo. Still, if it works it is all worth it
Have a good day (or night , I guess for the majority of you!)
kt
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I'm going to be joining all of you soon. More tumors in my bones plus 2 spots on my liver mean I'm going to be an X girl. The pills should be at the pharmacy tomorrow or Thurs so I plan to start Sun - I figure if I do complete weeks then the 2-weeks-on-1-week-off will be easier.
I've been reading parts of this thread so I think I have a handle on what to expect. Thank you to everyone - my questions are answered before I asked them!
Leah
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Hi Leah
I hope X is kind to you but real mean to those mets
My SE's aren't too bad at the moment, but I've yet to see if its working...
Heres hoping for the best for all of us
kt
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Hello ladies,
I wanted to find out I started xeloda 7/15 of this year and my tumor markers we're around 4.30 on that date. I had my tumor makers checked again on 8/14 which I know does not give enough time for xeloda to kick in but it is in the 700. Can it raise like that and start dropping slowly. Has that happened to anybody??? or does it me an xeloda is not for me...
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Tumor markers can go up when cancer cells are dying. That may be what is going on. You will want to wait and see what your next tumor markers are. It takes and upward trend to really tell if somthing is amiss. Hang in there
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Stella,
My TMs were 450 when I started Xeloda, then went to 700 one cycle in. Two cycles in, they were 400 again, and my Onc called last week to say they were still dropping. So, tumor flare is a real thing.
How often are they checking your TMs?
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blainjeffier,
They check my markers ever month. He does all blood work once a month. I just want to make sure that xeloda is not doing more harm than good....
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I think you'll be able to tell in the next two months whether Xeloda is working for you. After the initial tumor flare, the TMs should start to come down. So far, it seems that the 450 was your baseline, and then the 700 was your tumor flare.
My MO is so funny when it comes to TMs. He's very closed mouthed about them when they are going up. I can see him processing to tell me or not as he's reading the results on the computer screen. Next time, I'm going to call him on it and watch him blush. He knows I get a little mental when they go up.
Stay strong dear. I'll bet Xeloda is doing the trick. If not - we've got bunches of chemos to go.
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Hi all. Has anyone had a split on their thumb?
I made the mistake of doing some weeding in the garden (wearing gloves but I must have put too much pressure on my thumbs). The other thumb has a blistery look to it.
I think I'll keep taking the X because I don't want to let the mets have a break!
Thanks
kt
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Does anyone who is on Xeloda and Xgeva notice an increase in symptoms during the week you have the injection and are on the Xeloda? Fourth round of Xeloda started three days ago ( the same day as the Xgeva injection) and I have been trying to track the good days vs. the not so good days so we can plan activities and trips. The last two nights have been restless and filled with vivid dreams and today I feel as if I was hit by that proverbial bus. It dawned on me that I felt this way several days last month and now wonder if it is the combination of the two drugs. Not that I can change anything other than not planning to try to conquer the world on those days. Anyhow just wondering if anyone else experiences this?
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Hello Crone:
I also have XGEVA injections once a month. The week I was taking xeloda and was injected I had horrible joint pains and my right hip felt like it was going to be broken. I took aleve but it only helped a bit. Did you also experience this?
Mercy
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mercy, I do not post often anymore as I have been on X for 22 months now, but any tests including blood tests, scans etc should be done on your week off, same goes for xgeva . My onc keeps reminding me all the time. You poor thing! (((Hugs)))
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it must be the combo of the Xgeva and Xeloda that is making me feel this way. I don't think there is a way to schedule them seperately and feel any better. During 14 months of chemo & radiation ( first bout) I never wanted to spend the day in bed or on the sofa but yesterday and today, I can't think of anything better. I plan on asking how much longer I need the Xgeva. Scans in Oct. should help answer that. I hate to admit but being 14 years older then when I was first diagnosed is probably part of the problem. Probably shouldn't be having family for brunch followed by book club today but my mind still thinks it can do whatever it wants and my body just keeps dragging along saying SLOW DOWN. Some of us are slow to learn but it feels like giving in to the disease. Hope the hip pain was a one time thing and you don't have to schedule your activities around the meds.
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Crone, I have slowed down with taking Xgeva. After 12 months, I decided to take Xgeva every 6 weeks on my week off Xeloda. Not sure if this helps, but I have heard of other people deciding to come off the Xgeva due to problems, so I decided to start taking larger gaps between infusions. My onc goes along with any decision I make regarding my medications within reason, of course.
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I hear dizziness is a side effect of X - might explain what happened to me this morning!
I was getting ready to go & let chooks out- standing on the carport steps about to reach for my gumboots when all of a sudden I was falling and landing on my r) butt (where I have mets) & whacking my head on the concrete floor of the carport (1 meter down). Luckily my dad was over & he took me to the Drs- a few xrays later everything is ok.
But I am very sore (butt & neck) and a bit shaken. So ibuprofen, heat packs & rest & I will hopefully be ok in a few days.
It always happens at the worst of times. I have soo much to do (painting ensuite, work etc)
Oh well, it could have been worse. I'm so glad nothing is broken
I hope you girls on xgeva can sort something out to help with your se's, doesn't sound like much fun
((hugs))
kt
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well u do get dizzy with xeloda. I fell last week backwards and really hurt my butt area and the right side of my ribs. It bad enough to have all this pain from from mets know I feel like I am a complete cripple and anemia does not help either. I can't believe how this disease turns on u. One min I was perfect and know I am falling apart. I hope my onc could get my life back to some type of norm. It can't be this bad all the time.
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I know what you mean. Its so frustrating to not be able to do all that you used to be able to do. I hope our bodies adjust to the drug & we get to a better place- a new normal.
I'm looking forward to my CT scan in a few weeks. I want to see that X is actually doing some good, not just making me feel bad.
kt
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Stella, is the dizziness from the Xeloda or from the anemia?
Leah
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Leah- I looked on the list of SE's on the Xeloda sheet & dizziness & loss of balance are included.
Anaemia could cause it too I guess- so double wammy!
kt
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Leah, it's both anemia really sucks, from dizziness to cold feet, it heart raising to just aching. I am not sure what is worse anemia or xeloda. They are killing me right know with all the side effects. I feel like I have a consistant flu.
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Stella, I'm so sorry you feel so bad.
Dizziness is a possible SE? Wonderful. Can't wait. I already have positional vertigo d/t low BP.
I've been having achiness in my hips and legs. Anyone else dealing with that?
Leah
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Leah I have lots of achs in leg in hip in the beginning it was so bad I could not sleep but it does get a bit better with time.
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I was just going to ask if anyone has been dizzy on this drug, and I see I'm not the only one! Sorry about your falls guys! It happened a couple of days ago, and happened 3 times today. Luckily, both times I was near a chair. I'm on day 10 of my second round, and did not have this SE the first round. I'm seeing my oncologist next Friday (saw my primary last Fri, of course had no issues then!). Hopefully, it gets better and not worse!
Good luck
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Hi ladies--
I'm in my "off" week of cycle 15 on Xeloda (14/7, 2000mg per day). I hope that those of you with discomfort and more complicated side effects get some relief soon! I have been lucky so far, and had my tumor marker drop from 106 to the mid 50's, where it plateaued for a few months. I've been seeing increases of about 10 points per month and at last appt. was up to 99. MO says not to worry yet, as we're in this for the long term.
I did develop a soft tissue mass that was between the pleura and ribs (so technically not in my lung). My only symptom was sharp pain that was on-again, off-again but never constantly for 2 weeks that seems to be the benchmark for more investigation. I complained enough and had a CT that showed the mass. No other new activity anywhere else. MO decided that the location (close to the surface) could be easily reached by rads. So we zapped it! I had 14 sessions, and the pain disappeared!! What a pleasant surprise that has been! I know it won't be forever, but it has been so nice to feel "old normal" again. I'll be curious to see if that mass was the cause of the TM increase. We'll scan in 6 weeks or so.
As far as X side effects... it's been mostly some hand and foot redness and peeling, feet more so than hands. Neutrogena foot cream and Vanicream have both worked well. Gas-X has helped with occasional digestive discomfort. So to anyone who is about to start on Xeloda, please know that it is possible to be on this treatment and not be miserable all of the time. I send big hugs to those of you who struggle with the SE's- hang in there, and let's hope that the results are worth it.
While this chemo has been pretty easy, I know that like every other treatment, it won't be a forever solution. Hoping and praying that some of the wonder drugs in development become available soon and prove to be the magic bullet we're all looking for. Sending big hugs to all of the X-girls!
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Another question about H & F Syndrome. Finished round 4 on Tuesday. By Friday, both feet were sore and it was uncomfortable to walk. Yesterday, left foot back to normal bur right food is swollen and red and the heel area is particularly sensitive. The concern is that my ankle is swollen, red and hot. I have been keeping my feet moistened, trying to stay off it but we are due to leave to visit family member in nursing home which is a six hour drive away and then hope to spend some time sight seeing, shopping and eating.. Not sure if this is cellulitis in the ankle or just H & F and can be ignored.
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