All about Xeloda
Comments
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Thanks so much for the kind words and encouragement ladies....means so much to me!! I am usually the original cockeyed optimist, and have a strong faith that nurtures and sustains me (my DH is the same way), but ever since we got the news yesterday morning our faith and typical optimism have been struggling to resurface. So hearing your all's words of support and encouragement are just what we need to hear right now!! I am going to share the posts with him as he has been taking this even harder than I expected.
We have whirlwind holiday plans pending, which I know will help get us back on track emotionally and spiritually. My whole family is coming to town, so it will be like a mini-reunion! Lots of activities planned, but will definitely need to pace myself so I don't run out of energy!!
Sorry that this sort of high jacked the Xeloda thread... I started a separate topic about the bad news that I'm hoping will be an appropriate place for me to rant/rave/solicit encouragement, and really had just wanted to hop on here to wish everyone good luck with X!! But nevertheless, thanks SOOO much for the kindness and generosity...they have made my night!!0 -
I too am leaving the Xeloda thread. Unfortunately quite a bit of progression in my liver......one met grown & 3 new ones....6 in total. Onto Epirubicin now, 3 weeks on & 1 week off....not looking forward to that.
So good luck to all you ladies on X & I truly hope you all have excellent results.
Marymoir....so sorry to hear your news & sending (((hugs)))
Karen xxx0 -
I'm so sorry, Karen, you are going onto a drug I know nothing about. So hope you have tremendous success with it. Prayers and hugs flying your way!
xoxoxo
Calico0 -
Karen 2012 - I am from Saskatchewan and have been on the Xeloda for a year and a half - I have always had the week off and sometimes if the H & F got too bad an additional week off. How you tolerate the Xeloda will probably be a good indicator of the dosage. But I have never heard of not having a weeks break.
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Karen you've had a great run. But like some of us, it's time for a new one! Blessings and best of luck! Sue
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Hugs and best wishes to Marymoir and Karen. Only good energy to you on this next journey,0 -
Marymoir and Karen, so sorry you both have to move on to the next tx. Karen, good luck with the epirubicin, I don't know it, but am hoping it'll kick some cancer butt and will be another silver bullet for you!0 -
Marymoir and Karen, so sorry you both have to move on to the next tx. Karen, good luck with the epirubicin, I don't know it, but am hoping it'll kick some cancer butt and will be another silver bullet for you!
Marymoir, enjoy your family reunion, soak up all that love! I hope the tx will help!
Thinking of you both, big big hugs all round0 -
So sorry Maymoir & Karen that you need to move to a different chemo. I hope the SEs aren't awful, and that it really knocks the cancer back.
Ebru - sorry you are having the rash on your face! Hope it stays eased up, and that the X works!
I get scan results Wednesday. Keeping everything I have crossed for a good report. I actually looked at the images on my computer at home (I know, I know...I shouldn't - but couldn't help myself.) About the only thing these untrained eyes can read clearly is the cancer in the lungs. I even learned how to use the little measurement tool. Was pretty proud of myself. I will say, it's a little surreal to me to view these images. I mean, I know it's there - but seeing it with my own eyeballs is another thing entirely.
Wishing us all the energy to make it through the last stretch of the year through the holiday season. Next week, (and some time off to go along with it) can't come soon enough for me.0 -
Hi everyone, I , too, am leaving the X thread. I started in May, ended at the start of Nov. Surgery on Dec 2. We don't know if surgery and future chemo will keep it away, but X atleast gave me a bit of time to gain enough strength to handle the surgery with being hopeful that it didn't spread .I , and my MO , thought that at the end of my run, that the tumors had started to get slightly bigger. towards the end, my HFS was getting unbearable, and fatigue was horrible. I've been off for 6 wks now, and am starting to feel like my normal self again. Until the new chemo beigins in about a month.
I wish you all the best.
X definitely works wonders for many, and hopefully you all can benefit from it.
I'll be on other threads for updates, and I'll check in now and then to see how everyone is doing. Take care0 -
phew…results from first scans, bone and ct of organs, after 3 cycles of xeloda - lungs and liver lesions shrinking! no progression anywhere, no new lesions either.
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Sending gentle hugs to you ladies who are having trouble with side effects and you who are saying goodbye to Xeloda.
Sending happy high-5s to you who are having good results.
I'm about to start cycle 7. The HFS hit me harder last cycle. I had a fair bit of pain and peeling on my feet, but nothing too unmanageable so far, and it has improved during my week off. Best news for me, though, is that my TMs are coming down! What a lovely Christmas gift.
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Guess I'm grabbing a car on the train leaving the station too. A 9 month run is a reasonable expectation - I, like all the rest of you, just kind of hoped it would be years! But not to be. So trading trashed hands and feet for a trashed mouth. Off to A/A thread...HOpefully they will all be as kind and generous as you all have been!
Hugs
Sophie
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Sorry, SophieJean and SlowLoris. I got mixed results of the CT I had done last week. Lung tumors still getting smaller. However, new bone mets found. Now they're going to do a PET to see the uptake on the bone mets to make sure it's not existing mets, that were not visualized before that are now healing. I'm not sure I'm buying that - but there's no way to actually know until we get the uptake #'s from the PET. This is the first time I've had any kind of negative results since original dx in Oct 2012. It's certainly a punch in the gut, I'll say that.
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Hi, Liz, a punch in the gut is an apt description. I've felt for years like I was flunking a course I didn't know I was taking, and there was nothing I could do about it. Guess that's a nightmare.
xoxox
Calico
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Oh Calico - what an apt description!
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I'm so sorry for those who have to move on from X, and wish you all the best in your next line of treatment.
Lest anyone just starting on X should get anxious or discouraged, I have just gotten amazingly good news. Had a PET on Monday, after my third 7/7 cycle of X, and to my shock, it has stopped my mets-- innumerable bone lesions-- in their tracks! The report is peppered with phrases like "dramatic improvement" and "almost complete response."
This is the first good PET I've had in SO long. It kind of doesn't even feel real, like I wanted to ask if this is really MY scan report or if maybe it got mixed up with someone else's! I don't think I know how to receive good news anymore! t have been in treatment for three years for extensive, widespread bone mets (as in, every single vertebral body and almost every other bone in my body to boot). Xeloda is my fourth line of treatment. For the past year my lesions have been gathering steam and responding less and less to anything, and my TMs have been rising at an ever-increasing pace. So… WOW. I so didn't expect this.
It's kinda kicking my behind, but if LIFE is also a side effect, I'm good with that. My oncologist said she has patients who have been on Xeloda for years, and I hope I can ride the X train a long, long time, too.
Now if we can just get my awful pancreatitis under control so I can stay in treatment…
~lulubee
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Lulubee, thank you for your positive note on X. I agree that for most of us, it is a very good line of treatment. I have been on X since November 2012 (almost 14 months) and I am having excellent response, however the SE's are a nuisance, but tolerable most of the time. I feel a bit guilty that it has stopped working for some who have been on X for a shorter time, however, we all seem to respond differently to the treatments. Here's hoping that we can stay on X for years as well.
Hugs
Mandy
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Just started Xeloda on Thursday. Had 10 months on afinitor/AI but have progression that landed me in the ER with nausea/vomiting/dehydration from ascites and pleural effusions. No obvious mass in chest or belly, but lots of diffuse uptake on PET, so MO thinks that is the cause of the belly pain and other symptoms. Am still dehydrated and a bit fuzzy from the meds for nausea and pain, not doing well with reading back through all the 121 pages on this thread, but will try do do that over the next few days. Any advice is appreciated - all the MO said was take it with food about 12 hours apart (hard to do when I don't want to eat and I am only up about noon to 8 or 9 pm ....) and to keep Imodium on hand in case I get diarrhea.
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Lulubee - congrats on those great PET scan results!
Linda-n3 - people seem to have various reactions I terms of se's. I never had diarrhea, but had some initial nausea, so also make sure you have some Zofran or whatever works for you when you get nauseous. The hand-foot syndrome has been getting worse for me. I just switched from 14/7 to 7/7 to see if that helps (it didn't start getting bad until the 4th cycle). Make sure you keep your hands and feet cool and well moisturizer. So far, the Xeloda has been great for me and much easier to tolerate than abraxane. I actually have some energy back and even have my hair back (it's really short and white but my friends say that it looks tres chic...). I am hoping it keeps working for us all for a long long time!
HAPPY HEALTHY NEW YEAR TO ALL YOU GREAT WOMEN!!
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Lindan-3, I normally take my Xeloda about 8 hours apart. (I do try to take them 10 hours apart, if possible. I can't have breakfast early, and so I take Xeloda at about 10am and then again about 6pm. Perhaps you can have breakfast as soon as you get up and then eat just before bed. Make sure you drink plenty of water with the Xeloda.
I hope the side effects will be manageable, and I also had nausea the first couple of rounds. My feet got bad straight away as I used to love walking and I really miss that. I also had bad diarrhea, but that is not so bad anymore... it just comes and goes as each cycle seems to be different.
Hugs
Mandy xxx
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Thanks for the advice ladies. It's just a balancing act this week - hope things improve soon.
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welcome Linda, hope X will be easy & effective for you'
On my 7 days off in my 2nd cycle & this us day 6 & am feeling human again. Had bad nausea this cycle & my skin has broken out in rashes and raw spots on my chest, shoulders, arms & legs. Hands starting to crack too. We'll scan after the next cycle, dreading more nausea - all anti nausea pills I tried did nothing. Kind of lived on baked potatoes & crackers!
However, just want to wish us all good new year celebrations, and good times in 2014!!
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hi xeloda ladies-
I just wanted to tell you about a product called Sarna - it has helped with the itchiness and raw spots. I'm also using eucerin for my hands but I think I'm going to try other things that might be a bit more effective.
Carolben - so sorry re: the nausea. Have you tried ginger (tea, cookies, candy, ale). It often works well with nausea. Also believe it or not seabands help some people as well. Hope the nausea is less severe on the next go round...
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Hi all -
Lulubee - such great news with your scan results! I too have some good news to share! My last CT scan apparently picked up "new" bone spots, although my tumor marker went down again to 11.0. So - doc said that he thought that perhaps these spots were smaller lesions not previously seen that are now healing. I have heard that when they're healing, they can get 'angry' and more visible. So he said the only way to be sure was to have a follow up PET so we could see the actual uptake.
Well - I just got the results, and they used the words "EXCELLENT RESPONSE" to describe both my lungs and my bones! Like Lulubee, I couldn't believe that was my scan report! For some specifics - my lesion on the femur had an update on May 31, 2013 of 1.9, now only 1.0. Right iliac had spot with uptake of 2.2, now 1.4. L4 vertebra was 2.8, now 1.8! I've been on Xeloda since November of 2012 - so 14 months for me too.
Linda - I never had the hand/foot syndrome. And, I didn't have diarrhea at first, I had constipation...but over the months, that pretty much went away. I've never had nausea on this. I take 1000 mg. twice a day 14 on/7 off, though - so my dose might be lower? I did get knocked out with fatigue at first - I mean, I would just fall asleep in my chair at night - but not so anymore. Sometimes, on some days, I get very fatigued, but it's not constant at all...it comes and goes. My onc did say I was very unusual in that I haven't had foot/hand issues at all. But - I'm proof that not every person has to get them!
Generally, I feel really good, and I am so grateful that it's working for now. But I also feel scared, like, I'm Cinderella and I've been gone to the ball too long. Though, I try not to focus on the fear...try to just soak up the fact that for now, I'm ok.
Here's to hoping we can all ride this X train for as long as possible.
LL
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Just took my last dose of first cycle this morning. Am on 1500 + 1000. Had a little itchiness to the palm of one hand, but not sure if that might be from LE glove. Had such bad nausea and abdominal pain (from ascites) and fatigue has been ongoing for months, so when I started Xeloda I wouldn't know if I was having any SEs from it or not!
I still have the ascites and pleural effusions causing discomfort, have to wait until Tuesday for radiology to drain it off. Wish there was some way to move it up so I could sing with my choir on Sunday.
I am so glad to hear that this drug can kick in pretty quickly - am hoping for a positive response, but MO has not said if and when and how often we would scan. She and I both try to keep that to a minimum, but things changed pretty quickly when the Afinitor quit working, and it is taking me just a bit to regain my footing and get my head around this set-back. And I am getting some good meds for pain and nausea but they keep my brain so foggy that it might take a while to "get my head around this" - one minute I am fine, the next tearful, the next just feeling a little floaty and dreamy .... so for now:
zzz0 -
I am so sorry marymoir. I pray the next regimen will help and give you relief.
I saw my onc today and after only 4 cycles 7/7 he's taking me off due to progression. Next week we'll decide on a new regimen, and he said that there are still quite a few drugs we can try. So even though I'm disappointed I'm hopeful we'll find something else to work.
So I'd like to say goodbye and many blessings to you Xeloda Girls. I pray you have wonderful success on this drug.
Xo
Michelle
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X seems to be kicking some ass for me. Scans show some tumors have disappeared and others have shrunk considerably. I'm on 7-7 schedule now, and I just had my oophorectomy so maybe that helped.
Fatigue seriously sucks but I am now on Ritalin and it makes me feel normal again. The HFS wouldn't be so bad it I didn't just have a dermatillomania bender and mutilate my feet ripping off calluses. Now I use a foot file in the shower and try to resist the urge to rip.
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I'm so sorry for those of you getting off the X train. I hope that the next treatment will be the one for you all.
Cheers for those having good results!
I'm starting cycle #8 tomorrow, and just got my latest TMs from my onc. They've reduced by half since we started monitoring them 2 months ago. Woo hoo! The HFS is getting bad. My feet peel like crazy during the 14 days I take the pills but go back to normal on my rest week. My hands are just red and sore all the time, but I try to keep them as moisturized as I can and it seems to be manageable so far. The worst is that my fingertips are numb. I don't know if that's a HFS thing or a neuropathy thing, or what, but it just feels so odd. I can still function, so I guess I'll just put up with the weirdness for now. The fatigue is kicking my butt. I just try to nap when I can and get by the best I can the rest of the time.
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Got fluid drained from lungs yesterday - am so happy to be able to breathe again without gurgling!
Starting cycle #2 either tonight or tomorrow - probably tonight as I tend to be able to eat in the evening better than morning, so good to get first dose in today. Dealing with nausea since before Christmas, NOT timed with the Xeloda, not sure about the relationship. Will just take the antinausea meds and hope for the best.
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