All about Xeloda
Comments
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Havn't been around for a while, just a quick hello to all of you.
Jeanie - havn't communicated with you for a while, I am so glad to read your post. Wish you have a good scan result.
LL - I am on X since this January. Liver mets has been solved, I also got more than one hilar nodes. The max SUV taken was 5.3 before X, it was 5.1 in August, my Dr think its stable desease. I had symptom in my middle chest between August and september, and it's gone now. I believe the Xeloda does its job. Hope it works for you as well.
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Liz - good to hear you finally took the plunge and that SEs not too bad so far.
Jill - hope X continues to work well for you. Have you had any dose reduction since you started or do you just get occasional breaks for HFS?
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Thanks so much, Gail! l really had myself freaked out over nothing (so far, of course). The biggest issue was starting the chemo. Now, I feel better prepared mentally if SE's come on. I just had myself completely freaked out that it would hit me all at once.
For others that may be reading this - please don't be scared. As the other ladies have said, the SE's don't happen immediately.
Love,
LL
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Ok - I think I have a new SE. I noticed it last night, but chalked it up to a long emotional weekend. After I took the X last night, I had an overwhelming desire to sleep. I fought it for a couple of hours, but when I went to bed, I was out immediately.
I woke up feeling energetic and good this morning. But after taking the X this morning, about 45 minutes afterward, I again feel this overwhelming desire to sleep. Feel a bit mentally foggy too. Is this normal?
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Gail - so far I take occasional breaks, which help my feet get back to almost normal. I do plan to talk with my onc about a 7/7 schedule (which I know he isn't in favor of) or a 10/7.
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Liz - fatigue is a common side effect. I am working full time and about 2pm, I long to be in my bed. I usually take a nap after work and almost always get a second wind. For the first time in my life I am able to take short naps, which helps alot.
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Tracy 108 - I have had severe acid reflux/gas in the stomach and feels like an intense pressure like a heavy weight on chest and back. The doctor has me on Raberprazole also known as Periot I think for controlling the stomach acid.
I got the results from my MRI - some spots have disappeared, some have shrunk and others have stabilized. Also oncologist says the bones are building back up - Yeah!!!
Liz- SE have been feet peeling, fingers peeling a little bit and yes fatigue. Good luck on the Xeloda - hope it works for you
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Tracy - great results! Congrats! This is only day 4 of X for me, so things have been pretty mild so far. I am hoping this holds through next week when I have to travel for work 4 days next week (and be with my boss for 3 of them, and clients for the 4th). I've had no heart burn or nausea - but it could just be too early. The fatigue didn't seem as all powerful with last night's dose - but we'll see what happens today.
Jill - I am lucky enough to be working from home (not because of the cancer - but had this gig for the past 2 years), and so, I layed down for about a half hour during lunch. I felt a bit more alert when I got up.
I get a brain MRI this afternoon (because I asked for one - at least for a baseline) - then I see the onc again on Friday. My DH is going to this appt with me as he had a work think he could NOT cancel for the first real onc visit. Hope everyone has a good day.
I feel pretty rested and alert at this moment (7:53 a.m.) - so I hope it lasts.
Love,
LL
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Hi girls
Met with Onc yesterday about my feet (got bad the middle of the 4th week) and he reduced my treatment by one pill...so now I am taking 3500 mg. He also put me in charge of my own treatments...stopping if the feet get horrible again and then restarting....so I am comfortable with that. He did talk about the 7/7 plan...so I guess that will be in my future if this dose reduction doens't help.
Got my mediport put in yesterday and will start my Zemota after my next Onc. visit.
Saskie...Awesone news! Hope I can report the same with my first scans the end of the month!
LL...glad you are calming down and things are going better for you. Good luck with your MRI today.
Hugs
Robin
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Liz - I also feel sleep sometimes, usually around mid-afternoon and have problems getting myself out of bed in the morning.
Jill - Hope you can persuade your onc to try the 7/7 schedule. I mentioned it to mine but she says the evidence is that it's less effective than 14/7. Can't help thinking that 7/7 would mitigate the need for dose reductions and/or chemo breaks though. Don't think I could work full time just now as am getting up about 2 - 2.5 hours later than I used to for work, but considering going back on phased return or part time at some point. Currently on holiday as need to use them up or will lose them at end of year, but was previously on sick leave and have run out of sick pay. Waiting for an income protection policy to kick in, which will cover me for 75% salary up to 5 years.
Robin - hope dose reduction helps and you get on well with Zometa.
Saskie - fantastic news, long may Xeloda continue to work for you.
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GLORY HALLELUJAH!!!! I'm still stable! I was so ready for bad news after the blood test results showed liver numbers on the rise. Maybe working those 30 days was a bigger mistake than I thought and contributed to the blood numbers.
The results says lots of "unremarkable" and that lovely word "stable". I'll take it, I'll take it.........and even dream of maybe taking another cruise sometime next year!
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WoooooHooooooo!!! Celebrate, celebrate...dance to the music!!!
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Awesome news Chick! Plan away!
Nice to see you back Frapp!!
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Oh so happy for you, Chickadee!!!! WOOOOO HOOOO!!!!
Just fantastic!
Hugs -
LL0 -
Congratulations on the great news.
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Congrats on stability Chickadee - go ahead and plan that holiday - treat yourself!!
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Chickade u are in my thoughts hope results are good Tracy and Ll ijhave been on since april the only se's i have had is some fatigue some tenderness on feet more in the heat and alittle constepation at my last onc appt he said i didn't need my scans it was obvious it was working so i hope u both have good results too! love and blessings to all
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Great news Chickadee
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Such great news, Chickadee. Celebrate!!! And a good time to let yourself dream about that cruise.
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Some good news I forgot to mention.......I spent a week on a cruise indulging in scrumptious food (and big salads) and I weighed in with the Dr gaining only..........drum roll please..........1 pound!!!!!!!!
Thank you all for the cheers. I hope X keeps being good to me for a long time and is great to all of you as we'll.0 -
Well, I'm jumping off the Xeloda cruise...my cancer cells seem to be overachievers and aren't responding to the Xeloda any longer. It was nice hanging with you gals and I wish you all well and a long, good run with X. I'm on to Navelbine.
Cynthia
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Hello All,
I am going to be joining this forum. I have started on X this Monday, after 5 yrs. of NED. I am on 14/7 cycle 2000x2. It was discovered after I had a pain in my rib cage, I thought it was because I was doing so much yard work lol. It was discovered I had a pleural effusion, had it drained and cancer cells were discovered. I was on Tamoxifen but I guess it quit working. Now I am scheduled for an Oophectomy (sp) the day after Thanksgiving (well thanks alot for ruining my dinner! LOL) which will be on my week off from Xeloda. Has anyone had a pleural effusion and had it go away on Xeloda? I am working to read back all the posts, it looks like a lot of great info here!!!! I can so relate to Liz as it seems like she could have written my OP too!. Looking forward to getting to know everyone here, sounds like a terrific group.
Does anyone have trouble eating? I just am not hungry in the morning to take these pills and I get sick on trying to do it with just a glass of milk and piece of toast? And this being the 4th day I am finding that my appetite has disappeared, unlike the Tamox., it made me ravenous.
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Hi Europa!
I just started my first cycle of X this past Saturday, so today is day 6 for me. I was 12 years NED. Just dx'd on 10/18. I'm taking 1000 x 2 14/7. I've found that in general I just have no appetite - but it could definitely be the stress. I can't rule that out. They also put me back on Tamoxifen, which I don't have any side effects with. I didn't the first time around either.
I've been totally fine on the X - except some fatigue started hitting me after Sunday night's dose, and on Monday. Then Tuesday and Wednesday I thought - well, maybe I'm getting used to it or something, because I felt pretty alert, etc. Yeah......then after last night's dose, I sat in the recliner, and basically passed out until bed time. My DH had to wake me up to put me to bed, at which point, I pretty much passed out again!
But I have had ZERO stomach upset, or diarreah. Nothing like that at all. Just really no appetite.
Since I'm ER/PR+, I'm seriously considering oopherectomy. I'm 46, and my hormonal bloodwork shows me no where near menopause. The onc was like, "No need to slam you into menopause too...", and I'm thinking, um, hellllooooooooo? My ovaries crank out estrogen (I never even lost my periods when I had 6 months of chemo the first time around!).
The thought of another surgery, though, and growing a goatee on top of it doesn't sound very appealing, but if it can help me live longer, I'll grow a beard too.
Anyway - welcome. We can be chemo buddies.
Love,
LL
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Hi LL,
Thanks for the response and definately chemo buddies!!!
I am 49, also ER/PR+ and also am still experiencing periods after I stopped my original chemo. I sit here wondering if they should have done this 5 years ago (Ooph) and I wouldn't be here now :-(, but I guess it does no good to wonder now. I cant wait to get rid of them soon with that kind of thinking. I have so much estrogen its not funny. I am so surgery phobic that I did not even have recon. after my mastectomy, not that I had much to begin with LOL.
It seems that day 4 for me I have the fatigue. I ended up taking my pills late today and am trying to get up the ooomph to go grocery shopping. You are very lucky to have DH!!! I am not married and all my kids have 4 legs LOL!!! not much help there. I am so not looking forward to going back to work on Tuesday. I took a little break with all this going on.
Your lucky on the stomach, I have GERD and severe reflux, so I am on pills to take care of all that. I was in the hospital 2 weeks ago for this, the pain was horrible. My esophagus got so bad and infected.
Good to hear from you, and good luck on X for all of us here!!!
Euro
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Cynthia - sorry X is no longer working for you. Hope you get better results with Navelbine.
Europa - welcome but sorry you're having to join us. Hope the surgery isn't too bad. My appetite isn't great but is better than when I first started and I've had 6 cycles so far.
Liz - I think it's unusual to have Tamoxifen at the same time as Xeloda. I was told they can work against each other but I'm aware of someone who had X with another hormone therapy for several years and her onc said she wouldn't do it now but didn't want to take her off one of them as it was working for her and couldn't tell which drug was doing the most good.
Having an extension to the chemo break as neuts were only 0.87. Thought the extra week off chemo this week would have brought them up enough so don't really understand why they're so low as this is the first time I've had chemo delayed for neuts (though did have to repeat them on chemo day last time). Was happy to have a week off but was hoping not to have any further delay. Also had onc appt today. She seems reasonably happy with progress but wants to see me in 4 weeks instead of usual 6. Maybe due to Xmas holidays coming up but have a small area of broken skin under breast so she might be wanting to check that too.
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Hi all -
Well, I'm on day 10 now of the first cycle, and I'm still feeling very good. No issues with my hands or feet at all. I think my appetite may be coming back. I haven't had any stomach issues at all. And I think I've had less overall fatigue, or, maybe I'm getting used to it or something. But either way, very do-able.
I saw the onc last Friday, 11/9, and no brain mets on my brain MRI. I am having pain in my lower back, which I always did, as I have some bad disks back there too, but of course, now I associate it with the bone mets.
I also have a 3.8 cm "confluence of nodes" that are mets in my right lung (hilar? mediastinal?) pushing on part of one of the airways. I can sometimes hear a slight wheeze/whistle from that area, which is new. I couldn't hear that a month ago in this way. That freaks me out, totally, as I've had asthma all my life, and when I hear wheezing of any sort it just gets to me.
I'm supposed to see the onc in 4 weeks. He told me again that he doesn't think taking out my ovaries is necessary with Tamoxifen and Xeloda on board. We shall see at the next scan, I think. In the meantime, he is going to try to get my insurance to approve Xgeva for my bones. And if he can't get that approved, it will be Zometa. I was a little upset that he didn't already bring this up, and I had to bring it up before he said this. I mean, I think that's something he should've done at our first visit. It's pretty standard, so it's a little odd to me that he didn't. But - I'm trying not to sweat the relatively small stuff. It's much easier to obsess about my onc than what is actually happening to me, so maybe I just need to relax about it.
Gail - so sorry that chemo is delayed for you. That's interesting info on the Tamox and X working against each other...I will need to look into that further. Thank you for that info!
Europa - hope you are feeling ok on the X. I'm already looking forward to stopping it after Friday, but also strangely afraid to stop it at the same time. I'm a worrier anyway, and NOW I've got myself in a lather about "what if it doesn't work?" What if there's progression?"
I wonder if there will ever be a day again that I'm not obsessed with this. Doubtful.
Cancer is so, so awful.
Hugs to all -
LL0 -
Liz, good your SEs are minimal and excellent news on your MRI. Don't worry too much about the week off as I think there is still plenty of chemo in your system. Hope it works on your lung mets and you get rid of the wheezing soon. Some oncs seem to have so many patients you do sometimes have to check they're on the ball.
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Looks like chemo will be on Friday, as long as neuts are behaving this time.
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You guys find dry nose to be a problem? My nasal passages are constantly crusty and uncomfortable. I trying a saline squirter to try to keep it moistened but the relief is fleeting.
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Hi, Chickadee -
Not me...not yet at least. I have 2 days left to week 1 of my first cycle. Maybe a humidifier would help you also??
LL0
