All about Xeloda
Comments
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Good to read about some of you having gentle or no really discernable SE's. Im in a bit of a "It feels OK so it can't be doing anything place" (and I still have 7 weeks before scans).
Still, as with every other experience on this damn journey, I guess I just have to go with the good times and make the most of them!
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Chickadee - I posted what my doc and nutritionist said about the supplements because I read so much on here about people taking them I was surprised when they said not to. I'll look through the nutrition guide she gave me for any other suggestions. "Whole food" eating is tougher than I thought from a scheduling/planning point of view (not that we did so badly before but now I'm much more conscious of it). My energy levels have been creeping back up to where they were. That could be just from the relief that I'm finally on some kind of treatment after all those weeks of pulled start dates and changes. My scans won't be till August so at least I know I have something I can tolerate till then.
I'm not a breakfast eater so that's been a challenge for me but like other people have said a simple bowl of cereal or toast with peanut butter is enough. My doctor said that if it was 10 or 11 hours between doses one day and 13 hours the next it was Ok. Since I seem to tolerate it well I make sure I keep a dose in a pillbox in my purse in case I need to take it "on the go" - so far a nice muffin has been adequate to keep my stomach in line. I have a cruise coming up in August and my doc said they as long as I wasn't going away for a couple months they'd work my Herceptin around my vacation so I would guess if you spoke to your doctor they'd let you wait a couple days for your Xeloda. But you won't know if you'll feel bad till you take it. And that makes it really hard to plan. I bought tons of lotions, multiple hair wraps, all the anti-"D" meds they had in the store, and made sure my doc gave me good anti-nausea drugs before I took my first pill. So far I haven't really needed anything but I felt better knowing if I needed it, I had it.
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I have two cancers in my one breast. Ilc that is 95% Er+/ 50% pr+ grade 2 and idc that is 2% Er+/pr- grade 3. I'm on day 8 of xeloda and the idc that felt like a golf ball has gone down to the size of a small marble. The side that has ilc feels the same but it HAS only been 8 days. I'm feeling pretty optimistic!
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Wow, Frapp, way to go!!! How exciting....that is so great.
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I've noticed that I don't notice it anymore. I never had any pain but sometimes (when I get my period or when it's really humid), my "bad breast" would feel heavier. Well, I just finished my period AND we have had allmost nothing but rain for the past two weeks and I don't feel it. I actually wore an underwire bra - something which I hadn't done because it made me notice it more. And I'm fine.
This is my first day of my off week...then back to Sloan for Herceptin.
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Laurie,
Are we masochists? Because I'm having no side effects, I'm concerned that it's not working and yet my back pain is almost gone so it might well have been working on the last little met in my spine. When I had my EC chemo course I felt terribly weak and ill but thought it was worth it to kill the bad guys. Now I'm doubtful as though I'm getting an easy ride. Why can't we accept an easy ride? We are so suspicious!
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My onc reminds me frequently that side effects, or the lack thereof, have no bearing on whether it is working on the cancer or not...just that you are having side effects from the drugs they are putting into us - and since everyone is different, we all experience the side effects to different degrees. I have had a pretty easy time with X so far and I just feel incredibly fortunate - you won't hear me complaining about that one!
I know that any day this easy run will end and I'll have to move on to something else that might not be as gentle, so I am just thankful every day for this blessing. 0 -
Well I spoke too soon. My feet are starting to tingle an get red on the sole. Hands feel just a bit odd as well. Maybe this is simplistic, but has anyone soaked their feet in Epsom salts? I wonder if it would have any beneficial result. Relaxing anyway.
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I used baking soda and it felt great. I used cool water and followed up with some "cooling peppermint foot cream" from Sally Hansen. Amazing! I generally love to be barefoot and now I find it's not as great as I remember. I did find a pair of slippers in the back of my closet which are now my favorite things. They have a very thick padded sole. I wish I knew where I got them so I could get a dozen more pairs. I can put on slippers if Xeloda does the job...
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Chickadee - I hope you find something to help your feet. The pharmacist told me that the HFS shouldn't hurt, it's just cosmetic. Hmmm, doesn't sound like it from those of us on it.
I went ahead and started yesterday. A few hours after the first dose, I felt "funny" in the tummy. It's hard to describe. I wasn't queasy or nauseous, but had that "sick" feeling like I needed to eat. I'm feeling it again today. Eating seems to help so I'm going to keep snacks with me. I hope it's just a temporary side effect. I could use some of the diarrhea side effect because I'm pretty stopped up. I took some pills last night which should help today. Stupid IBS. Other than that, I feel the same (knock on wood, lol).
We spent some of yesterday at the beach under an overcast sky, but it didn't stop my kids from playing in the ocean. I sat on the beach in my fleece jacket wishing I was anywhere but there. Can you tell I'm not a coastal loving person? The sun broke through today and I think it will be a nice day for my grandniece's first birthday. Wishing us all a nice day!!
Cynthia
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Your grand niece and I have the same wonderful birthday. I know that strange feeling in the stomach. After 2 months it seems to be gone.
Gotta go, having a nice dinner out.0 -
I get that strange feeling too somrtimes if I haven't eaten enough with my pills. I just have a little snack and it goes away.
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Chickadee have u tried smoothie for breakfast? That is the. Only thing I can eat
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Happy bday chickadee. May you have many more with our friend X.
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Bhd1, I get into green smoothies every once in awhile but I find I'm not good at establishing routines and habits. Maybe I should say new ones.
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I am on 2000mg twice daily ( 5'2", 120lbs), 7/7 cycles. I have been combating low platelets and anemia from bone marrow involvement and I think he wanted to zap the cancer hard at first and then adjust. The first cycle I had some nausea that was relieved with ranitidine ( Zantac 150 twice daily), no diarrhea or hand or foot issues. The second round I bumped up to prilosec daily which helped, but by day 6, I started with diarrhea and the most horrible foot swelling and pain I have ever had. I have been treating daily with Aquafor so the skin has not cracked but I can hardly stand. The bottoms of my feet turned red and I even blistered on my heel. I see the oncologist Tuesday for scan and lab results. I hope the results are decent because I definitely want to go down on the dose.
Mari
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By the end of my 7 days this time, the soles of my feet starting tingling and turning red. The palms of my hands got blotchy and tight. I'm on day 3 of my off week and it's subsided quite a bit.
Is that typical for the HFS? If I can count on it backing off each time I can manage.0 -
Day 12 and I find that my hands and soles of feet will get very warm at times. Bus so far, nothing else. I'm wondering....do the se's hit you on your week off? I was on a trial that hit really hard when you weren't taking the drug and am just wondering if this will happen on xeloda. Thursday starts my week off and i want to be prepared.
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I have found that the week off some things do happen. One day fatigue will be intense. An upset stomach on another. Other days are ok.
It's kind of weird really. This time I went through the 7 days on with no Gastro trouble. That has been my problem for the most part. Instead I have the beginnings of the HFS. That's definitely fading after 3 days off.
I guess we are each unique and so is our experience. I know on the 14/7 protocol I was much more miserable in the second week.0 -
I'm on the week off of cycle 1 and so far feeling OK with must a bit of foot soreness. Had my first big tiredness crash today but putting it down to the fact that I've been on stroids for the the brain mets which have kept me buzzing but have now cut down to 1mg per day. Slept most of today which was nice for a change!
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Hello X-Divas!
Welcome to the newbies! I kinda lost this thread and have been posting on the other one...duh.
After 10 months of 7/7 4000mg a day, I have learned a great deal - Xeloda is unpredictable. SE's come and go, some are non-existent, some are more severe in some and not in others, if you don't get any - you are just lucky but the shit is working, some days are great and I feel like wonder-woman and the next day, I am sleeping beauty - and there is no indication of what's it gonna be! I just go with it, have all sorts of lotions on hand, accupucture actually helps the numbness, adjust and learn the limitations, get a handicapped parking permit, keep you hands and feets and nails super clean and add Advil - even with the pain meds for the bone mets, the X effects sometimes break through and Advil in a great addition for calming the inflamation rather than adding more narcotic. I have added Olive leaf extract to help with the fatigue and it works (cleared it with the onc as always) and its se is lowing blood pressure - since X can raise it, its a winner - most important, 'listen' to your body - when it says 'stop' - stop and rest - whatever you were doing will still be there to finish another time.
Lastly, if you find something that works for you - do it no matter how 'silly' or 'old wives tale' it seems! Just check with the onc first. I just keep remembering the goal - keep me alive as long as possible with the best quality of life I can have - with that thought, I will overcome and find a solution to anything that this X throws at me as long as it keeps working!
Here's to all us X-Divas - may we all live long and prosper! (geez, I can be such a corn-dog)
Love ya'll
LowRider
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Well said, LowRider, I just hope it can work for me for a long time as I have no trouble with it. Thanks for the reminder about the handicapped parking permit - should get that organised.
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Well just started with the X and T again after a 1 month break (at my request). I thought I was doing fairly well as far as SEs but after a month off I realized just how far down it was dragging me. I have regained strenght and energy like crazy. Food tastes fantastic (have regained 15 lbs this month) and I have been able to e out in the sun.
I just returned from a weeks vac in Fla with girlfriends. It was fabulous. I am as brown as a nut (figured my chnaces of dying from skin cancer are pretty low!). MY friends loved my feet-I have had so many layers peel off my feet that they are like baby feet. Very pink and tender-huge contrast to the brown tops.
Hating the pills!! Figure I have about 10 days before the SEs kick in. Being normal was so much fun but time to get back to the battle. I did 5 cycles before my break.
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Lilylady -- I hope you will find your re-entrance to X easy to tolerate. In my expereince, I haven't found that X "accumulates" like some of the other chemos, but it does help to have a break every now and then. I recently took about 2 weeks off (instead of usual one week -- on the 14/7 plan), and it was great! Even though I love my pills, it was so nice not having to keep up with them for that long! I just started back and things are going really well again. My onc said that he is not opposed AT ALL to me taking a short break from time to time if I need it. Much better to take a short break and then get back on it, than getting to the point where you have to stop for a longer period of time to resolve issues.
LowRider: I did not know it has been 10 months for you already! That is so GREAT!!
)My feet have not been an issue for awhile, but I've still been overly cautious with them. I got a pedicure yestereday and finally alllowed them to do the callus stuff on the bottom of my feet. It didn't hurt at all and boy are my feet smooth now - they REALLY needed that!! Made my day!
A very quick update on me since I haven't posted one in forever: Overall I think I am tolerating X extremely well. I really can't complain at all about the few se's I have. I have routine scans in a couple of weeks to see if it's still working. Oh, how I hope so!! *Fingers crossed*
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Boy howdy, I'll agree with Low that SEs are unpredictable. I'm glad you posted that, cuz I thought I was nuts. They come and go. For sure it's been a long couple years since I've had so many better more functional days.......and regression! Love it.
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lilylady- Thanks for your post. I am taking about 3 to 4 weeks off of X so we can go to Alaska. I was wondering if that was enough time to get my energy back and get my feet better.
I went to the Onco May 31 and he did not like the looks of my feet, I just thought they should be that way but he said absolutely not and cut my dose by one pill a day and we will see what next month brings. We are leaving August 16 for Alaska and my last pills will be July 22, do you think I will be able to tell a difference by that time or should I take more time off. I am on a 7 on 7 off, and only taking 2500 mg a day, I was on 3000 a day until he cut it back. The onco gave me the option of taking 3000 a day for 5 days and 9 off or doing 2500 for 7 on and 7 off. I figured it would be easier to do the 7 on 7 off and will get 2500 more per cycle than if I did the 5 on 9 off, who knows if the 2500 more per cycle would make any difference. Has anyone else been on a 5 on 9 off cycle? He also said he will do scans in September and if it shows no progression he will let me take a break from it, that is kind of scary. I want to go off but then it is like insurance you hate to live without it but hate to pay the premiums, know what I mean? I started taking X the first of September, 2011 and took 4000 a day but was cut back in December due to hand and foot problems.
If anyone has taken a month or more off when did you start to feel better after your last dose?
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I just got the call from the specialty pharmacy and my first packet of Xeloda will arrive next Tuesday. I see my MO on Wednesday and then I guess I'll be starting on Thursday...1500 mg twice a day on the 14/7 schedule. I was pleasantly surprised to hear my copay is $25.
Do you all see your MO before starting every new cycle? My MO's nurse called after the pharmacy call and she made it sound like I'll get labwork before every new cycle. Is that normal for everyone?
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Yes I have lab work and see my ONC before every cycle. Here's hoping X is gentle on ya
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I guess I hadn't thought about it but yes I will have labwork again in a month and see the onc. While on AIs I only had appts every 3 months. She says she'll do scans every two months now. X has definitely affected my blood chemistry more than AIs.
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Oh, god, Michelle, I am so sorry to see you have mets. We have been on several topics/boards together all the way through my treatment course. I had hoped you were done and onto life with only a specter of this crap in your rear view mirror. Your advice on the Rads board was invaluable to me bc my skin started to fall off and the Xeroform stuff u mentioned was the ideal tool for me to heal myself even for a month or more after Rads ended.
I am here on this topic of the stage IV board only bc I have been placed on X. I had a outcropping of cancer growing out of a node into surrounding fat. So I got the extra power of X to fight the demon cancer. Even though still considered stage 3.
Genentech has a card program where u may be able to cut ur copayment in half. I paid $11 per cycle for mine. Ask the pharmacy if you qualify for it.
I was limited to 4 rounds of 1000mg twice a day for 14 days w 7 off. I am tall and made of good strong Irish and Italian stock, so am not petite, but not fat... Sturdy. I m surprised how low my does was. But with that dose I got very few side effects.
Yesterday was actually my last morning of pills. I did get very tired with this go round. I do have dry hands and feet that require cream regularly but no cracking. I get the "trots" every once in a while, but you eat a clean diet bc of diabetes as I recall so you may not have that, I ate too much fat and it would end badly. Lol.
I have NP oncology appointment tomorrow so I will be interested to see if they r gonna scan me for mets or wait.
It's good to see your avatar again but sucks that it's here. And I am ravenously jealous of how fast your hair has grown since we ended the infusion chemo.0
