All about Xeloda
Comments
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Slowloris - Let me try to answer some of your questions. How did I find i had mets? My only inclination something was wrong was when i sneezed, my middle of my back hurt (kind of around where your bra hits). I knew then that that wasn't right, something was going on there. Unfortunately, I had mets there from shortly after first dx but I wasn't told about it till a year later. When they scaned me because of the new back pain, it had spread to more vertebrae and the hips. But the feeling of more or new pain is always the first reaction we have is panic button for more cancer. I don't know if that will ever go away. PET scan for me this wed, yipee.
Trying to decide to retire early on disability or not? That was a really tough decision as I'm single and I knew it would be a financial hardship for me to do this. That being said, I wanted to have quality of life and I knew I didn't have it while I was trying to do my full time job. My mind and body couldn't take it any longer. Plus my coworkers and the CEO were unpleasant to say the least. I am now on LTD and also SSDI. I don't regret it in any way and in fact have so much more peace of mind knowing that my time is mine now to make the best of each day. My doc also gave me words of wisdom when he said when your work doesn't bring you joy any longer, then that may be the time to end it. Going on disability didn't mean I was a quitter, just that I chose to spend my time I have left doing more things I love. I will be a new first time grandma this Nov for instance.
Let us know what your MO says on Wed.
Linda
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Slowloris.....I retired when I was first diagnosed with secondaries (May last year) after 12 years in my job. I had mixed feelings & really thought I would miss it. Guess what....I haven't missed it one bit & wonder how I had time to work....lol
I love being able to do what I want, sleeping if I need to, lunch with friends or family, whatever takes my fancy. My latest is knitting for my future grandchild that I'm so excited about & I feel so glad I'll be able to spend as much time as possible with my daughter & the bub...
I would hate to think I spent my last years in a job that I have realised since I left, I didn't enjoy. It's all about looking after me & having MY retirement.
Realistically, we know with secondary cancer we will not live till we're 85 (I'm 52) especially with Triple Neg.....
Of course you will do what you feel is best for you & that's just my story..
Big hugs & take care..
(((Hugs)))
Karen xxx0 -
Karen , that's so exciting having your first grandchild xxxxx so exciting! Slow loris, I am 60 and my only son is 21, living at home with me and i am divorced. He started uni last year and 3 days in I was diagnosed with mets. I was so ill and was sure I would be. Dead within a few months so retired straight away. I went crazy and was spending money left right and centre but have improved so much am thinking I might have been a bit hasty lol. I spend my days running my son back and forward to uni and relaxing. A few weeks ago I was thinking I should get a part time job but I am exhausted and aching with mouth sores from new meds and its the last thing I would want to do now. I love it staying up late with my son while he is studying and then we might watch a movie or go out to one together. I don't think work can ever replace the time left with our children and families love Gail.
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Slowlodis, me not mentioning about it doesn't mean I do all the housework and continue my daily life before dx.
Actually my fatigue is so severe, I need my toddler-nap each midday to be able to continue the rest of the day!
Most times we call food in & if I have the energy go out!
I have cleaning women, no misspelling, cheaper to have 2 and divide days of week.
I've already retired a couple of months ago and feel I have done the best, cos my family needs me, not my colleagues and vice versa.
I checked with my MO as you will with yours soon. Mine did not respond at all. She might have even thought sitting across me. " what are ypu expectiing hon, you have cancer. Shut up and sleep on!" I imagined from the look on his face.
Well .. To admit, comparing with SE's of Taxotere, Adrymacin and alike, X's SEs have been more managable so far for me.
Hope your app with MO goes well, but please bear in your mind in cancerland, you are not the careerwoman you once was, not the mom/ wife doing everything at home as you did before. Point. Seek help whenever you can everywhere for each choir. Even if you feel fine, please use your energy sparingly, which you definitely will need later in the day, each day!!!
If can manage financially, retire right this minute. Trust me, noone from your office cares about you as much as your least favorite family member. Well that's been my experience at least so far
)
Hugs
Ebru0 -
Gail in addition to meds, I eat red stuff, veggies& fruits ( the more sour the better), especially berries, which help. Maybe it's just the spir taste numbing my mouth, but who cares. It is a temporary relief anyway, he he...
Ebru0 -
Brilliance. Thanks for these words, Ebru.
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Thanks DancingVeggie.
I just remembered I am 38 with an 8-year-old btw ☺but one day at a time & scratching with each bit of energy to enjoy each sec I can have with managable QOL.
This is the other side of the coin, not the joking Ebru of the boards, for once....
Now back to my bookings to my island in Maldives, bye.0 -
Hi Slowloris,
I am still working. I've rearranged my schedule so I'm at 3-days a week but still nearly full time (2-12 hour shifts and 1 8-hour shift). I only have one day where I'm on my feet most of the day and that's the day I'm pretty pooped when I get home. I'm with you though. I'm close to retirement and I do not want to spend my last few years working. The only reason I keep going is I'm trying to get the car paid off. Once that's gone, I can make it on the SS. I also decided a few years ago that when I couldn't work because of treatments, I gave myself permission to take the disability. I've worked over 40-years of my life and never once took a dime from anyone. Now that I'm at the other end, I figure I've put in a great deal of time and money into the system and it's my turn to accept some reward for it. You're not quitting. 28-years on the job is huge and if they have something available to you to take now, go for it and don't look back. It will take the pressure off. Enjoy sleeping in, spending more time with the kids and take off on that long overdue vacation with no regrets.
Just my 2-cents!
Sue
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Hi Slowloris - I am in the same boat as you. Get tired very easliy and don't have the energy to clean. I work from home doing books and have gotten a girl for the last 2 months to come three days a week to help with books so I have Tues, Thurs, and the weekend to sleep in do house work or just do nothing. There is nothing saying you couldn't maybe ask to be put on part time or relief for a while to see how you can handle it. There is nothing wrong with quitting and enjoying life either. i have 2 friends from Phoenix who are not doing well and they are just living life as much as they can and are being with their family and friends. I have been on Xeloda for over a year now and it is keeping the cancer from growing so far - killed a lot but not all. We just have to quit being everybody else's care givers and look after ourselves first. Hugs to all you girls - love the info and chats on this site. More accurate than the oncologists - Lol
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Thank you all for your imput on retirement. I have decided to apply for Disability retirement and SSDI. My regular retirement is a combo of both, so Dis retirement needs to be also. I would bring home more money on Dis retirement, and still be allowed to work partime,although not at my original job. they don't offer part time disability, and since it is retirement and not quitting, i will still be able to keep my benefits.
My appt with MO really gave me no answers. No nodes on neck could be felt, so they are either really deep, or maybe infection. I'' have a CT scan on the 9th of the neck, so hopefully I'll have more answers then.
My MO wants me to start on 7/7 cycle bc of hand and foot syndrome. do you all think that the benefits of the drug remain the same on the reduced schedule, or would I be sacrificing effectiveness? anyone else on the 7/7 schedule?
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Good going Slow. I know you won't regret your decision. I'm on 7/7. Doctor first put me on 14/7 but I was switched before I ever got to the second week. All I read was that side effects were a lot less on 7/7 but effectiveness of the drug was exactly the same.
I've had few side effects and no hand/foot. I just finished my 4th round last Friday so I'm hoping I'll be able to stay with this one. Congratulations on your decision!
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Thanks Ebru-you have some great insight!
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Hendricks, now you made me blush!
Slowloris, I am so happy for you on your decision. Confident that you will not regret your decision! Enjoy your naps & hobbies sis!
As much as I am glad about my TM's dropping, the SE's have become consistent throughout the cycles, of which I cannot cry out for. Still alive & have mostly quality time with family., thanks to hubby working, DS going to school, when I do nothing, literally..enjoy a cup of coffee otr the movies with a friend & nap through the afternoon..
The 10th cycle is completed today, though daily dosage was decreased 1000mg per day but the cumulative effect proves X is indeed a big gun! The pink color is to cover up what's inside..
I have read & heard of many using X for years & I hope to become one of them, if a better yet milder tx doesn't show up. Now I get what MO meant with saying "we'll adjust the dosage through time"
Hang in there ladies, in my case it's severe fatigue & pain in met areas as well as headaches covering my scalp in week off (like yours Kebab) But getting used to it in my daily life. ..hoping to see just 500mg daily dose someday, though !!
Hugs
Ebru0 -
Hello, Everyone. I will be joining you here, starting Xeloda probably as soon as Sat. or as long as it takes to get it approved and delivered to me. I just had my scans results today and I know have progression to my bones. So goodbye faslodex, and hello Xeloda. I have had progression on Arimidex and Faslodex so my onc is moving me on to Xeloda. I hope I have better results. I also have a pleural effusion with a decent amount of fluid in my left lung. I have been reading here a bit and did a short trial on Xeloda when I first was rediagnosed, just one cycle. I am looking forward to learning from all of you here.
Euro.
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Hi. everyone. I have just started 3rd cycle of X and as yet SEs have been minimal. Slight HFS and the dreaded D. Had Tms done on monday and they have dropped by 50% after 2 cycles. I'm over the moon. Reading your posts really inspires me. I hope I can get to stability if not NED after 4th cycle.
Thank you all for just being there.
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Hi kebab. Hope everything is going well for you. How r you coping with the Taxol?.
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I have been on X for almost a year now and it is certainly doing its job. My TMs have gone down to almost normal and there has been considerable reduction in mets in the liver and brain. My question is this.... I am just wondering how long people have been on X with success as I am hoping that some people may be on it for years. Keeping my fingers crossed.
Cheers
Mandy
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Hi Motherflush,
I'm in my second cycle of Xeloda. Last week (my week off) I felt great, but now (day 5 of my second week) I'm sort of exhausted and my hemoglobin is low. Can you do a bit of translating for me? What are "D's" and "HFS's"? I get the full TM workup on Monday, and my fingers are crossed.
Love, Ronnie
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Hi all - it's been a while since I've checked in. I wanted to share some positive news. I've been on Xeloda since November last year, after just being dx'd in Oct. 2012. My CA 27-29 was 38 at the time. I know - very low, but extremely HIGH for me. My latest marker was 12.6, and my latest PET on 5/31 showed, "positive response in lungs to chemotherapy, and positive response in bones to chemotherapy". Of course, because I am totally mental, I looked at my own PET on my computer at home, and even to my untrained eye, I can see the largest tumor in my right lung is smaller, and it didn't light up like a beacon - the uptake has decreased to the point where I'm not glowing everywhere.
I am so incredibly grateful for this, and about fell over when they told me my tumor marker...but of course, NOW I'm scared that the other shoe is going to drop or whatever. It's like I'm afraid to embrace this good news. I think what all of this means is that technically speaking, I'm healthier than I was a year ago at dx. I can BREATHE now, no more coughing - like at all, and no more wheezing. No more pain in my chest where the tumor is.
I just hope X keeps working. Because I think when they tell me I have to switch, I am going to really, really lose it emotionally. And you know, I know that day IS coming. At some point.
Also - I had a hysterectomy in May, and now take Arimidex - so I wonder if getting rid of the ovaries really helped me so much too? Not sure, but glad I did it. I was agonizing over that for years. Now I wish I would've done it sooner.
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Great News LizLemmon. You are doing so good.
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Lislemon....great news! We all love to hear good news stories....😜😍
Mandy...love hearing your news too. A year on X is fabulous!! I have heard of people on it for 3 years or more, so fingers crossed xxx 👍👍👍
I've been on it for 7 months with stable bone mets & major shrinkage of liver mets!! Scans again in 2 weeks.....the last one said 'liver mets barely visible' so I'm hoping this one says 'liver mets NOT visible'.......👏👏👏
Hugs to all.
(((Hugs)))
Karen xxx0 -
Hi ronnie. Ds -toilet problems and HFS -hand and foot syndrome. Hands and feet get hot and sore and prone to skin peeling. Secret is to keep cool and moisturised. I find a lotion better than cream. Good luck with markers.
X helen0 -
Hello to all you Xeloda ladies- I have just joined your club as of Monday. I was on Abraxane for 9 months, and while there was no progression of disease, TM ( in the low 100s) didn't budge and as per usual for me CTCs were up and down. So, MO thought we should try something else to see if I got a better response. I am taking 1500 mg in the am and 1000 in the pm, and already have that yucky chemo tiredness. Is Xeloda cumulative?
I'm also nauseous and taking Zofran so I'm constipated as well (TMI?). Guess its time for miralax...blech.
Sounds like there is room for adjustment of dosage - I hope my MO will try a lower dose. Quality of life and all that jazz...
Although I am a rare poster, I am great full to read all these posts by all of you. They give me hope. Many thanks.0 -
hi ladies i think my days on x are coming to an end just got results got skin mets sure was a nice run x was good to me for 18 months with very minimal se i hope it does good for all u ladies will let u all know what next for me
love and blessings chris
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Welcome Mompsych - I hope you find x to a easily tolerated drug for you. Lots of good help on here. I think one of the most important for me was the one about keeping your meds 12 hrs apart. Also, if se's get to be too much, ask to switch to a 7 day on/7 day off instead of 14/7. That helped for me.
Braids3 - Thanks for letting us know. 18 months is a long time. Were you stable on X? I might be leaving soon too. Waiting to take more tests to confirm suspicious liver lesions and a lung lymph node. Hopefully, will have another MRI or PET scan nxt week to confirm. I just want to get onto the the next drug if that's what I've got to do.
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Thanks rangermom!
Why did you find it important to keep the doses 12 hrs apart? Did it help with se's?
I tend to sleep a little later these days, and don't want to eat dinner too late, so the timing is more like 10 to 10 and a half hours apart. Lots of new and wonderful se's to get used to.
May the scan gods be with you...
Braids3 - hope the next go round lasts as long for you (and is gentle on you too)!0 -
braids3, I hope that there is another treatment that will get rid of the skin mets. My thoughts are with you.
Cheers
Mandy
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Hi Everyone,
This post has been very helpful, thank you all!
I'm on day 14 of my first 14/7 cycle, looking forward to 7 days off xeloda. I'm experiencing blisters on my lower lip, some difficulty swallowing and pain in my toes and balls of my feet. No redness, swelling, or peeling. My hands are fine. Just wondering what to expect........ do se's get progressively worse with each cycle? Do some se's go away completely?
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Dina - no, the se's can change each month. There is no rhyme or reason to it.
Mompsych - yes, the 12 hours helps with SE's and especially nausea. Even if you can just eat a snack before hand will help. I think you asked about a cummulative effect, and the answer is yes, it can and did for me. About the 8th cycle I felt like i hit rock bottom. Didn't last too long but man was I tired and needed a break. Unfortunately, it looks like I may be getting a break but not the way I wanted. More tests for me next week. All in all - the x was very good for me, the blistered feet and hands, fatigue and nausea, and big D were the worst but far better than IV chemo. Since going on the 7/7 all the se's are to a milder degree.
Good luck all just starting! I hope it knocks your nasty cells back to nothing.
Linda0 -
I've been on X for just over 8 months now (& hoping for many more!!) & generally take it 10 hours apart & it doesn't seem to be making a difference to me.
Having said that, I've been very lucky with minimal side effects! My hands are slightly red, feet are fine, I get minimal nausea but I do seem to sleep more. I cant tell the difference when i'm on it or having my 7 days off..... So all in all, I think I've been a lucky girl....:)
Have a lovely weekend lovely ladies.
(((Hugs)))
Karen xxx0
