All about Xeloda
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Congrats on your cancerversarity and have a good time on your trip!!
I don't pay attention to what round I am on, should I, lol
LivingIt, where are you?
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scutters me too...LOL. All kidding aside... What i am wondering is physical addicition at this point so bad? I have stage iv with bone mets so I light up like a christmas tree and liver mets (20 plus tumors) I control my pain and use ativan when necessary for anxiety. Yes I will develope a DEPENDENCE on these medications and will most definately have to increase doses at times as my disease advances, however that is far far different than ADDICTION. I am using these meds as intended. And what is anyone going to say that I was addicted to ativan or oxycodone when I died? If it helps current quality of life, and allows me to function, go to work, cook, enjoy my family rather than leaving me bed ridden I say bring on the drugs!!
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Hey Divas: Well, here's something new and crappy - by about 4 PM every day now, my fingers begin to seriously hurt and burn, not the skin (already cracking, bleeding, peeling) but from the Inside it seems. Is this what is called "a neuropathy"? It really, really hurts! Also turns my fingers into stupid clumsy blocks - can't button or pick up or work the remote (oh no!). I have found that sticking my hands in hot water sometimes makes them feel a bit better, but read somewhere that the hand/foot thing is caused by swelling of the blood vessels, and wouldn't hot water make this worse, not better? Don't have a clue - will ask the doc, but thought I would ask the wise women first - any ideas? Thanks in advance - Sue
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the drugs to treat neuropathy are no fun...
I wouldn't soak my hand in hot or warm water without seriously moisterizing them first. in my 'Xeloda bad days', I slather on cream (nivea or whatever) - i have about 10, and cover them with gloves. the skin absorbs the cream.. my hands are still swollen tho. I also do this at nite. I have a dozen pairs of inspector gloves (nylon, on line) that wash beautifully. I stretch them so they won't tighten. I spent a week without heavy moisterizer and it was awful afterwards. I play and teach piano and thankfully they are still functioning. .. probably from lots of exercise. i practice about 2 hours.
I also take hydrocodone.. which helps immensely with the pain.. and is not too bad of a pain reliever as far as side effects. Naproxin works in a pinch but does not nearly make me feel so good as the hydrocodone. I wish you the best of luck. the neuropathy drugs are the same ones used to treat seizures and are very sedating. On the other hand, (no pun intended) I am on a seizure drug and maybe that's why i seem to be doing well.
hopefully the onc. will have some solutions.
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Hi everybody,
Hope you don't mind me posting on this thread. My Mom had a horrible reaction to Xeloda, and her Onc told me it was probably because of a certain enzyme she had in her body. Some people have it and some don't. He said the Xeloda contains the same enzyme, and it can become toxic if your body naturally makes it. You get overloaded with it. Her Onc says he has a 99-year-old woman on Xeloda, and she's doing fine. Maybe you should ask your Oncs about it if the effects are really bad. I can't remember the name of it, but the docs should know. It would make sense to lower the dose....lower dosage, less enzyme.
Peggy
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SueOpp....sorry if I missed this, have they not cut back your dose or given a break? I called about some redness and they said stop, don't take anymore the whole weekend then come in monday....just for perspective......
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Guys, I had Xgeva on Monday. Feel like crap today. Connected?
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K_lo.....have you had Xgeva before or did they change you from zometa?. I never had any problems with either one, but then that is my problem it seems.....no SEs, no results. Sue....yep, it sounds like neuropathy....I did not like neurontin, but had pretty good results with some vitamin supplements Acetyl L-caratin and B 12.
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Ladies, you guys are so brave and wonderful. I read about your tmts with this drug and how well you cope with some nasty SE's and just laugh and keep going strong. I have only done 2 hormonals and 3 chemos since I was diagnosed and I thought they sucked but at least it finally worked for me. My insurance would not cover me for Xeloda when my onc wanted to put me on it after I did the Taxanes before the Gemzar. This drug sounds spooky to me. Wishing all of you great tmt responses and little or no SE's. Dawn.
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Hi Everyone! I have not logged on to BC.org for 5 years because I was in remission, and now here I am again. I have extensive liver mets plus some bone and lymph involvement. I just progressed after 5 months on Abraxane and Avastin, so I started Xeloda yesterday. I started having severe pain a few days after my scans showed progression although I was having no symptoms at all since my stage IV diagnosis. I do not know what to do because I was at work Wednesday looking and feeling great, and today I cannot get off my couch without pain. I have morphine, but if I take it can I drive and go to work? I do not want to be a zombie around my family, either. Ugh. How sick is the Xeloda going to make me? Thanks in advance for any help or advice. I hate cancer!0
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mary so sorry to hear that the ca is back. As far as pain medicine is concerned, many of the times when you have pain, and take an opiate pain medication there is not that zombie effect. I would of course not drive/ work til you get an idea of how YOU feel. And of course with work it would depend what you do...Remember to take care of yourself. Treat symptoms and pain and suffer as little as necessary. Hope you are back on your feet and pain free soon.
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Hi Mary
Sorry you've had to join this forum again. I'm in my 5th cycle of Xeloda and have found it to be the best chemo so far with very few side effects for me. I started on the 14 days on 7 days off cycle taking 4,000mg per day (4 tabs in morning and 4 tabs at night) but due to developing a medium case of Hand Foot syndrome where my fingertips and soles of my feet became very sensitive and then peeled we reduced the dose to 3,500mg per day (4 tabs in the morning and 3 tabs at night.) The great thing about this drug is that the dose can be tweaked to counter the side effects. Guess you've been put on Xeloda for the soft tissue mets in the liver, others have reported excellent results with this drug! I'm using it because I have become hormone refractory and had skin met progression while on Arimidex and Aromasin. This drug has worked for me, no more skin mets and my CA 15-3 count is now in the normal area for the general population. I still have a bone met being treated with a biphosphonate (Bondronat.) I think you use Zometa or Xgeva in America.
My only advice to you is to take Xeloda no later than 30 minutes after a decent meal. Talking to others who have had major side effects I have found that they take the morning dose with a cup of coffee,not with a full breakfast. I wonder does this effect side effects?
With love from Australia
Joy K
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Gosh Mary did it sneak up on you all of a sudden? must be a shock.
There are always some people who are sensitive to any chemo, but I too have tolerated it well. Fatigue may even out but they say it is totally appropriate to take ritalin or similar med to
get out of bed.
Best of luck. Kathy0 -
Hello, I was just dx with stage IV mets to left lung a few days ago. Instead of being upset, im more depressed as I just had to deal with this whole cancer journey last year im 31 years old . I want to stay postivie but hell im really scared. I start chemo on Monday 11-14. I will be taking Xeloda 14 days on/7 days off PLUS I will be doing infusions every 3 weeks of Taxotere
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Hi singleton 80! I am a "young" mom too. I use that young word lightly as I am 34. Looks like they are hitting you hard with the chemo. I did Taxotere in March. I have not started my Xeloda yet as it has not arrived at my doorstep. Hopefully wa can start together and monitor each others side effects.
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Hi Mary and Singletona - So very sorry for the troubles each of you have to endure just now, and my heart goes out to both of you. But please know - xeloda seems to be a super drug for many of us, beating the monster to the curb. It offers good success until the next superdrug comes along. We share our woes about SE here on this thread and it helps so much. Please stay in touch - we are all behind you. Sue
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Catching up, my 7 days on is over now on my 7 days off and I love it rather than the 14/7 we will see if it works, got my every other month blood word so will see what the TM are doing....
LivingIt where are u?
Sue so sorry I have no idea what that is, but let us know...still haven't checked which round this is but still putting cream on my hands....
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Thanks for all the kind posts. The recurrence did come out of the blue. I was training for a triathlon, feeling great, went in for my checkup and suddenly my tumors markers had jumped. A pet scan later, I went from stage I to stage IV with mets galore, but especially in my liver. Since I failed Abraxane and Avastin, I am now doing 14 days on 7 off Zeloda.
To Singletona- I did taxotere five years ago, and it caused some bone pain and stiffness but was not too bad. Good luck.
Do you all take zofran before taking your Xeloda? If not, do you get nauseous?
Thanks again for your help.0 -
So, Xeloda should be on my doorsteps anytime now pending my insurance. So, girls......I need advice on what should be in my bag of tricks when I start it! Example: creams etc!
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Missing our zingy Zoh .
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TigerBlood - Thank you yes we can def compare notes. Tomorrow I start my chemo (Taxotere) I think Im suppose to start Xeloda tomorrow as well, Im unsure so I going to bring the meds to the appointment just to make sure.
Yeah my ONC told me we were going to be aggressive with this chemo.
Sueopp , thanks for the words of encouragement, I hold the combo knocks this beast out !!!!
Marygla, Thank you I will def keep yall posted
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Marybe, I misses yor Q way up there ^. Xgeva is my fresh start with recent bone mets confirmation. So no Zometa ever. I do love the little cartoons on YouTube that show howmthese drugs work. So I picture that causing my aches. Little PacMan workers.
What's up with your Tx , Marybe?0 -
Hi all,
Just a note to let you know that I have heard from our zingy Zoh. She's been laying low, spending some quality time with her kids and sleeping a bit. She has scans tomorrow so be thinking of her!
Glenna0 -
Thanks Glenna
Was wondering where she had got to and actually stalked her to see when she had last been on line. I'll be crossing everything for her.
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Singleton/Mary: Triathalon!!! OMG. Thats just crazy! Im so sorry that you are now having a big dose of "Diagnosis Trauma." Its a real thing and don't discount that this is gonna be a rocky few weeks as you adjust to what your body will need. There is hope. This is not a 'death sentence'. There is a lot to learn about living LIVING with stage IV cancer and this is a great place to do it. Im thinking of you both as you re-start and start this crazy buisness.
Thanks all for the kind words of missingness. Ive been either alseep or hopped up on oxycodone and ritalin to feel "normal" and take the kids to the park (like on sunday) or have lunch with a pal (yesterday).
I get scans today and Im pretty anxious. I will bring you all with me for this one!
Sueopp: You should be taking a break from X yeah? Its not like HFS just goes away. I don't want you to have hurtty hands my pal! Call your onc today alright?
K-lo: Whats this I hear about a headache? You doing better there? I hate those things. Always give me the willies.
Much love to all my Divas.
Zoh
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:-D
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Oh, Zoh, I am saying my prayers for you that the scans show good results.
K-Lo.....you and I have different views of that little pac man.....I don't like to think about him because when they showed me that video at a support group I tired a long time ago, I came out of it with the image in my mind of that being the cancer chewing away, making holes in my bones.....not the treatment at work.....I always did have a way of twisting things around in my head and the vision was not a good one. I think Xgeva is good stuff, it is supposed to be a lot easier on the kidneys and also is so simple to get. How are the coumadin levels doing?....mine was 1.9 yesterday so they told me to stay on the dosage I am on.
Tiger, Single and Mary.....hope you all do well on Xeloda.
I am still in limbo.....not doing any treatments at present and feeling fine. The other onco I consulted with here had the nurse call me yesterday and he is suggesting low dose adriamycin weekly or low dose carboplatin with taxotere daily. I told him the onco at MDA had told me that I showed extreme toxicity to abraxane so maybe we would want to stay away from the taxol family and told him also he had said there was a "slight" possibility a higer does of Xeloda might work for me.....so the two oncos are to discuss things and will get back to me. Since I had no SEs with Xeloda I think it sounds like a walk in the park compared to the other two, but know my dosage before was low. I am thinking of asking them to do the CA 27.29 again to see how fast it is going up and if there is not huge change, may just not do anything until after the holidays. It is small a petty I know, but I want to have hair for Xmas and I also want to be feeling well enough and have enough energy to throw several holiday parties. The lst one is scheduled for Dec. 3, at my Dad's and I also want to do one for the Cincy BC gals I know and another for my friends and neighbors here maybe on the 17th. Christmas decorations are my thing and I like to share them with people.
Have a good day everyone. We had a huge rainstorm here last night and it is still going this morning.
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z'oh.. i will definitely 'be with you while you are being scanned' here's hoping for great results. you sure are absolutely loveable and i wish the best for you.
Marybe. .. i really am impressed with your participation in your treatment plans and decisions.
MAry, Singletona and tigerblood welcome to the Xeloda divas! welcome from the Xeloda divas?
anyway, the single most helpful thing I've done for Xeloda SEs is order a dozen of these gloves
i really prefer the nylon ones in that they are super easy to wash.. all match and pretty much allow me to do anything with them on. They are used to protect the moisterizer (just about any kind will do) that i slather on my hands constantly. the heavy duty creams are the best.. i like unscented aquaphor or neurogena.. they all seem to work about the same but i don't like scents especially since i cook a lot. One can order these in silk (excellent for typing or playing the piano) or cotton.. both hard to clean. I love the silk gloves but they are about 10 dollars a pair rather than 80 cents.
I take my Xeloda after a light meal, eat lightly to avoid nausea and diarrhea, and drink lots of water. I am on cycle 12 and my onc says i am one of her best patients as far as side effects. I do need an extra hour of sleep a day but I am on another drug as well (Keppra for seizures) that is fairly sedating. I keep my iron levels up and try to exercise beyond regular housekeeping.. (not very good at that, alltho i keep a pretty clean house with mopped floors and fairly clean kids' rooms.
The hand and foot side effects can become rather painful and i have a prescription for Hydrocodone.. i really like it.. it removes the burning sensation and doesn't have too many side effects except constipation and that is offset by the side effect of diarrhea that comes from Xeloda.
ha ha.
hope your journeys are successful and easy..
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welcome to the new diva's we are a fun group, as fun as you can be talking about X.
love the gloves, waiting for the other shoe to drop with the X and getting Zometa today and got my TM done so will see how they are since the change in dose and after taking 8 weeks off, it was 57 down from 293 and 185
I take the X whenever I want, but I try to eat before (it says eat with food) but I don't get sicker or nauseous if I wait longer. I always have diarrhea even on this 7 days off....but constipation comes now and then also.
Zoh thanks for checking in....glad you are spending time with the kiddies but they are loving it also...
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So none of you are taking Zofran with your Xeloda? I am afraid to skip it, but I might try if you are not sick without it.
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