All about Xeloda
Comments
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I've been on X since May and am just recently starting to notice heartburn. Out of nowhere, even an hour after eating, I will sometimes get a bubble of hot acid come up. Is that heartburn? Never had digestive issues before. I don't eat much dairy. I'll have to start paying more attention. The quesyness seems to have gone away. I know that cancer drugs attack quickly multiplying cells. Since linings are usually quick to multiply, I wonder if this is a cause of indigestion and bowel problems and maybe doesn't have anything to do with what we eat. On the other hand, there must be some foods that are more irritating than others.
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Congrats, Chicadee. Good news seems to be going around recently. My scans are coming up on the 17th, I hope to join you all in celebrating.
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Yes please bring us more good news. We all deserve some peace for the holidays.
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Chickadee - good news on the blood tests. Let us know how you get on with cutting out dairy.
donagee - I get acid reflux, but it's much better since my GP switched my meds to lansoprazole. I think we've all felt overwhelmed with things at times, so you're not alone there. I've been on X since end of June so just about the same stage as you. Some ladies have been on it a number of years so it can work really well. Have you had any scans to check how it's going?
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That's great news, Chickadee!
I go to the onc tomorrow. He'll does tumor markers at every visit. Last one 4 weeks ago showed that CA 27.29 went down a few points. I know under normal circumstances they can fluctuate a few points one way or the other - but what has me excited is that it didn't go shooting up. So, I'm hoping that's a good sign.
In other news, I've somehow managed to forget to take 2 whole days worth of my X pills - so that now I will end on Sunday night instead of Friday night. I have no idea how I did this. I'm really going to have to get one of those a.m./p.m. pill holders, and put them in there when I get the refill to avoid any confusion.
I don't really have a problem with heartburn or nausea with X. Not at all. For me it's constipation. Nothing with the hands/feet yet either. Hoping that lasts for a while longer, and hoping that I can keep taking this for a long time (assuming it's working). I think Doc's plan is to scan me again in Jan.
Hope all of you are having a pain free day and a peaceful one.
Love,
LL
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When I missed a day, I did not change my schedule. I just counted it as a missed day. It was easier to keep track if I stay on schedule.
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So far missing dose hasn't killed me(note sarcasm).
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Thanks, Frapp - LOL, Chickadee!
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Thanks so much to those of you who have responded to my concerns about heartburn and indigestion. I just was down yesterday so my message sounded worse than I meant it to be. In general the X is working very well for me. . .I just continue to have stomach issues though much less intense than before I was on X. I will probably have scans in the new year . . .the thought of which raise so much anxiety in me, I almost want to skip them unless I am really feeling bad. Yes, I know I know. . .I should just buck up and have them. . .which I will undoubtedly do!
I guess the holidays (which I have always loved) gets me going toward the dark side. . .how many more will I have etc etc. Want to see my kids have kids!! Really very unhealthy and immature of me! I so appreciate all of you have reached out to me. I can't tell you how much it means. I guess it must be "normal" to hold pity parties every once in awhile. As long as you don't linger there too long. . . Best wishes to all of you for a wonderful holiday season. Your messages to me, even just one-liners, mean so much. . .remind me that I am not alone dealing with this. . .
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Lol Chick!
Scan results tomorrow...fingers and toes crossed!
Robin0 -
Oh Donagee -
It's not unhealthy and immature for you to have such thoughts. Or if it is, I'm right there with you! My son is 23, and I am so very grateful he is grown, and I got to see him turn into a man - but I still want to see my grandkids one day. I have always loved being his mom, and I always was looking forward to someday when he would have his own children that I could love to pieces also.
I think what we are feeling is very human. I also wonder about the holidays, how will I be feeling next year at this time, etc. Again, how could we not have those thoughts?
Pity parties are ok. They really are. The first month after my Stage IV dx, I was pretty much a basket case. Crying so much, I was causing myself sinus infections from all the congestion. I'm about 6 weeks out from my dx now, and I can feel that I am doing better. I'm getting a grip. Thinking more about living than dying (usually). Some days are great, and others, something just hits me the wrong way, and I start crying again.
I think dealing with the feelings is normal and ok...and we'll get better at it with time.
Keep posting - this is a great place to talk to people that completely understand your happiness and your fears....
Hugs and Love,
LL
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Oh heavens ramp it up from pity parties to all out caterwauling, howl at the moon,blubbering boohoo sessions.
I have one at least once a year or so. When no one else is around.......thats key......except for my poor doggies who run for cover at first then come back and hover over me when I'm down to just whimpering in a pile of mush.
It's cathartic.0 -
Mine usually grab me in the shower. I have a full on bawling session, then dry myself off and move on. It actually feels good.
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Oh it is such a relief to hear from all of you. So I am not a blubbering weirdo after all! I am "normal" for us! I never like when my doc says I have to get used to my "new normal" but I guess I do. Yes Chickadee, you are absolutely right. . .the key is to have these breakdowns alone, otherwise you could scare the heck out of the people!
Love you all. . .and thanks. . .for more than you could possibly know.
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Well, went to my onc today. Asked about Ritalin for energy (just to see how he'd react). He said it was overkill. Hmmm...not sure how I feel about that firm stance - but it's ok. I only mentioned it mainly to see what he'd say.
Other than that, my WBC is only down by .40, and my CMP from 11/9 is perfect. My insurance approved the Xgeva, so I got my first shot of that today. The nurse said what she mostly hears in the way of side effects is generalized muscle aches.
Onc said that after 3rd round of Xeloda, he'll order a CT. I want a bone scan too - head to toe, but didn't break that to him yet. I'll have that conversation when I see him again in 4 weeks. I'm reasonably content with my treatment, and feel that the X or the Tamoxifen MUST be working because I can breath so much better (lung mets), and my L3-L5 hurt so much less. Either that, or I am completely delusional. Guess the scan in a month will tell us which!
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Sounds good Liz. Could have used that energy today. It was wash the bedding today. Hard part, putting it back on!
I've been on X since April. Most of the random inconsistent side effects are fading and my blood test looked good. Didn't do a bone scan in Nov and the onc seems interested to forgo a scan in Feb if the blood test stay near normal.
Aren't we all afraid to proclaim victory because as soon as we do its time to change treatments again. So I'll say I'm really happy with X so far and hoping for more months of boring results. Hoping same for you as we'll.0 -
The Great News continues on this thread! My lymph node enlargement is either "significantly reduced" or gone....and my bone mets in my back are all healing. This was my first scan since starting X in October. I also had my first Zometa infusion today....easy peasy!
LL...I could actually feel the pain in my back getting less and less. Hang in there!
Chick...I agree wholeheartedly....quietly doing a happy dance here.
donagee...I was a basket case in the beginning too...but coming here and talking to all these wise women....who "get me"...made all the difference in the world. I too am a shower cryer....but not so much anymore. It really does get better as time goes on. Come by anytime...we are here for you.
So, today my Choc Lab had to have surgery....for SKIN CANCER. REALLY??!! Ugh....
Hugs to all
Robin
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Wow..had my first Zometa infusion. Within 24 hours I felt like I had the flu...talk about achiness. Lasted almost 2 days and then disappeared as fast as it came. Hope that won't happen again!
How's everyone else doing? Our thread got pretty quiet! Must be the hustle and bustle....
Hugs!
Robin0 -
That's what it did to me Robyn. It lasted one evening and I thought I was going to be awful sick the next day but woke up feeling fine.
Does anyone else's seem to retain water in your on weeks? I think that is what's causing the joint and muscle aches. I notice my hands and feet especially seem puffy and are worse first thing in the morning.0 -
Robin - great news on the results. Haven't been on Zometa, but have heard the first dose is the worst and most ladies are fine after that.
Liz - also good news. You seem to be on plenty of meds so something's bound to work.
Back from onc appt this morning. I've been a bit concerned that some skin mets seem a bit bigger (but could be due to having more feeling in finger tips since dose of Cap reduced or anxiety over reducing dose making me think that). Onc thinks things are still relatively stable so will keep me on Cap for at least another couple of cycles before reviewing again.
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Oh yeah I remember that first Zometa. Knocked me on myk butt for about 24 hours and then I was fine. I've moved to Xgeva early this year. Love the convenience of a shot over a transfusion.
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sounds promising that it was a "one hit wonder"!
Robin
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I guess I get to join you ladies. I took my first dose last night!
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Welcome, I hope it is a beneficial and kind to you as it has been to me so far. 8 months and counting.
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I hope so too Chickadee! May you continue - and I'll follow
So far so good. I'm on 1800mgs twice a day.0 -
My mom is off Xeloda/Tykerb now and on to Tykerb/Herceptin. I just wanted to let you ladies know that she was on it for 11 months with no bad side-effects, including hand-foot. I know it can be rough for some, but I hope it treats you well, Chele!
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Just got my brain scan results after an abdo, chest & pelvic scan last month. Still stable after 8 months!
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Thanks KarmaKittie!
Yay jac!0 -
Welcome chele. 7 months for me at 4000mg 2x's a day. The only time I had any severe peeling was on my feet during my summer vacation in August at the beach. I think the key is to stay away from heat. I hope it's as good to you as it has been to me.
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Jac53 - great news. Hope it continues to work for you.
Chele - welcome. I'm now on same dose as you following a recent reduction and find SEs much better. I'm almost 6 months on and have so far been relatively stable.
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