All about Xeloda
Comments
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Just started Xeloda, on day 5. Praying this works!
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MarshaMum,
Hope you have a long run, great response and minimal side effects! I've been on Xeloda for 6 months and everything has been shrinking and becoming less active. The only real side effect I have experienced is Hand and Foot Syndrome (HFS) but it's been very tolerable. So handy to be able to do chemo in pill form so I can travel and don't have to sit at the infusion center for hours.
Hugs, Susan
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I am on my 5th cycle of Xeloda. Each cycle seems to bring on different SE. I began experiencing severe bone pain in my left leg last Friday. It has not let up. I am having to take Norco for pain. Have any of you experienced bone pain? If so what did you do?0 -
I don't want to sound alarmist, but I would contact your oncologist immediately. One rare SE is osteonecrosis.
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Hi all - I am relatively new to the boards and don't completely know how the website works, so I hope this post works. I have some questions about Xeloda, for you all who have been on it for awhile, or know others that have been on it.
I did chemo after my lumpectomy in 2003, adjuvant chemo, and it was such an awful experience I promised myself I would never do chemo again. I am Stage IV ER+ since 2010, and have now exhausted all my hormonal therapies. All that is left is chemo, or palliative care. My oncologist wants to put me on Xeloda.
I am afraid of chemo. I watched my husband die badly and early from an experimental chemo. I am afraid mostly of what it will do to my quality of life.
I have read about the SE of Xeloda, with HFS and explosive diarrhea being the most common SE. I am afraid of permanent foot damage - my feet were affected by the Afinitor, and I have broken a bone in my foot for no reason. (No tumour, no accident, no reason). I also have some minor neuropathy in my feet from the Afinitor.
What I read says that the HFS is USUALLY reversible. I am afraid of taking Xeloda and then not being able to walk. Does anyone know of any cases where the side effects from the hand-foot syndrome did not reverse? Has anyone ever heard of anyone not being able to walk again after taking Xeloda? I read somewhere on the internet about one woman who lost the use of both her hands and feet on Xeloda.
Are the effects of Xeloda reversible if you stop taking it because the side effects are so bad? Has anyone seen the side effects, especially HFS, being not reversible?
Stage IV in Montreal
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hi StageIV, I have been taking Xeloda since November 2012 and I also had very bad side effects from Chemo back in 2007 when the oncologist stopped my chemo on the 4th round out of 6 for my own health sake, even though I begged him to give me anything. I was in hospital after each round of chemo and my whole ankle broke whilst I was walking the dog during chemo so I know how you feel.
I must admit, that my side effects on Xeloda were very severe after the first round having to go back into hospital again with bloody diarrhea. It reminded me of having my periods. However I must have burst a blood vessel so I was sent home again and my Xeloda dose was reduced. HFS was terrible, with my feet blistering on the soles and then cracking and bleeding. Nausea and explosive diarrhea were also early side effects, but managed with medication. I found that I could not stand for long periods of time (10 minutes or more, definitely not 20 minutes). My feet felt good whilst I was standing or walking, but half an hour or so later, they began to get very hot on the soles or the bottom of my feet. Splits and cracks were common, and I put on quite a few kilos in the first year. However, the feet started to improve when I adjusted my dosage again (they still look and feel like a snakes skin even though they get lathered in so much cream every day and believe me I have tried every cream under the sun). I can now walk long distances with no problems unless the weather is too hot, and I always wear cotton socks and closed in shoes.
It is your choice whether to try Xeloda, but it is still working for me. (after being diagnosed in November 12 with mets to bones, lung, liver and brain and now I am almost NED).
If you can, try the 7 day on/ 7 day off cycle as the side effects may not be so severe for you. I was on the 14 day on and 7 day off cycle and my side effects get really bad if I take Xeloda for 14 days because after day 12,all hell breaks loose. Each cycle will have different side effects or different severity as well. My onc does not do the 7/7 cycle, so I have compromised to 11 days on and 10 days off (still 21 day cycle) and my side effects are very mild and easily managed.
Your results after 9 weeks should give you an indication whether Xeloda is working.
warm hugs
Mandy
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Hello Mandy - thank you VERY much for writing such a detailed reply. I really appreciate it. I need information and I really appreciate learning about your experience. Also, I am glad the medication is working so well for you.
Best, Judy (Stage IV in Montreal)
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My SE's aren't too bad, since my onc lowered my dose. I have the H/F syndrome, but can deal with that. Bag balm seems to help the most. And OMG, the "explosive" diarhea was horribe and the cramping. I will NOT go through that again! That was when I was doing 7 pills. Dropped down to 4, but this cycle my onc wants me to try 5 pills. I also have a rash, mostly on my chest and my back, right below my neck, which itches. And on occasion I feel a bit woozy. All of these are doable, just not fun. Altho, breast cancer is fun...said NO ONE EVER!
Mandy, so sorry your SE's were so severe. I am grateful that mine are doable. Everyone reacts differently to these drugs.
Stage IV, all you can do is give it a try. As for SE's being reversable, perhaps. But I think we are on this drug for a long haul, that is if it's working. My TM's started going down immediatley, I was getting labs done every 3 weeks. Onc is letting me do them every 6 weeks now. Good luck.
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Judy,
Since HFS is caused by the chemo leaching out of the sweat glands in your palms and bottoms of your feet, I can't imagine that it's not reversible. It's your skin that becomes sensitive and dry and your skin gets replaced so rapidly (on average every 27 days), once you are off the chemo, it shouldn't take long to go away. As others have said, you could always give it a try and if you don't like the SEs, you can ask for a dosage reduction or get off of it completely. I have never been on any other chemo but I think my MO put me on Xeloda first because it is the easiest chemo for most people. It also seems to be very effective and it's nice that it's in pill form.
I have learned that you cannot fear a treatment because other's have had bad SEs. Everyone is different. I didn't take Tamoxifen because I heard so many bad things about it. If I had taken it, I might not have ended up Stage IV. When I took it after being diagnosed Stage IV I found I did not have ANY SEs from it! So frustrated with myself because it was too late. I had this fear of getting Whole Brain Radiation and that turned out to be very tolerable and very effective.
I don't want you to do anything you are not comfortable with but I do want to encourage you not to be too fearful.
Hugs, Susan
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My understanding is that the leaching is from blood capillary vessels. That's why the body part that are affected are feet and hands (mouth and genitals rarely).
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I would be happy to continue with Xeloda for the rest of my life as the side effects eventually are do able.
My ca 15.3 tumour markers are just starting to creep up very slowly from normal , but I am still staying on Xeloda for the time being as I have no symptoms yet and the oncologist is not sure where it is spreading either, so playing the waiting game. the way I see it, is that after more than two and a half years, Xeloda is still working, only a few of the cancer cells are getting smarter, but most of them are still being beaten by Xeloda.
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Well done Mandy
I hope you get a very long run on xeloda. My tumour markers are going up again (for the last 3 or 4 tests) so I'm having another scan in 4-5 weeks to see if anything is going on. Hopefully I won't have to change treatments, as like you say xeloda is doable and it's convenient
Here's hoping for both of us - & everyone else
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hi kt, yes my tumour markers have gone up the last couple of times (6 weekly blood tests for tumour markers only the alternate one is for all other blood tests) . I think scans may be due in a couple of months as well. Here's hoping the tumour markers are just playing games as they are not a true indication, hehe. Fingers crossed...... living with cancer does suck. But Xeloda has been pretty easy considering the other chemos.
hugs to all.
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Tumor marker tests don't work for me so after a few tests that showed my markers in the normal range (and I'm Stage IV) Doctor doesn't bother with tumor markers for me anymore.
My most recent PET scan done December, 2014 showed Xeloda is keeping my liver tumors away but two spots in my bones are showing increased activity. This means Xeloda is still working for me after being on it for over 1 1/2 years but the bone activity makes me wonder if this means Xeloda's beginning to fail.
For now Doctor and I consider that a good scan result, I remain on Xeloda and just continue dealing with hand/foot syndrome.
Doctor mentioned he has a patient who has been on Xeloda for five years. I'm hoping that will be me too!
Kessala
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i have insurance now! I start xeloda tomorrow. Makes it all feel too real. I have all the worries that come with that. I know you all understand completely. Just hoping it doesn't knock me on my butt. I am so grateful that we will be fighting the monster!
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My oncologist has me taking 5 pills in the am and 3 at.night. 500 mg pills. I am significantly over weight. But wow. I'm nervous I'll be sick as a dog
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I agree with you all, very do able and praying to be able to take it for a LONG TIME!
HFC, 8 pills? I started out with 7 and couldn't do it. Got a terrible rash, had the explosive diarrhea, cramping, horrible sores on my lips, and of course the HFS. Onc dropped me down to 4 pills, and this cycle, he has me trying 5, to see if I can handle it. I wonder why he doesn't have you do 4/4. Good luck, and I hope you are able to handle it.
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i looked at the bottle and it's 5 and 4! I took it at 615 this morning. It's a little after 10 now. I have a headache but I've been having headaches recently.. I'm crazy sleepy so I'm going to lie back down. Thank you
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Hi everyone!
I started taking Xeloda (actually the generic of it), in August 2014. At first I was put on 3 pills twice a day (3000 mg). I was getting lightheaded and my feet hurt so bad that it was hard walking (they also completely peeled). I was lowered to 2 pills twice a day and my feet got better. I have only had them peel a little one other time. I have never had diarrhea, actually I get the complete opposite and take 2 senna tablets a day. I am very dry (skin, mouth, etc), have a non itchy rash on my lower arms, nails breaking (tea tree oil has helped), and tired quite a bit, but as others have said, it's doable. My tumor markers have dropped from over 400 to 12 (they did go up to 15 last cycle, we'll see Fri how they are now). My scans have shown my tumors either shrinking or have totally disappeared in my lungs and liver. I do have a new small spot on my skull (it's also in my spine, ribs, clavicle, and sternum), but my oncologist was happy with the results of my last scan, so I'm still on it.
Having never had chemo the first time around (10 years ago, I was stage 1, it came back 3 years ago in my lungs and spine), I was very upset that I was being put on a chemo (I was first on Faslodex which worked for 1 1/2 years). I expected the worst. I hope I am on it for a long time. I will be put on the taxane chemos when this stops working.
One question, how long has everyone been on Xeloda?
Good luck everyone!
Lynne
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It's an excellent idea to exchange time on Xeloda for everyone to compare notes. My wife has been on it 1 year and 2 months. I encourage everybody to fill out their profile and make it available. This way it is posted automatically at the end of each message. For those who have not, you can go to My Profile, click on the My Treatments tab, click on Add a New Treatment and select Chemotherapy: all the relevant data can be volunteered in the next several screens.
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Thanks for responding. I had already contacted my oncoligist. We did an ultrasound to check for a blood clot and no clot. Did a CT scan and everything was normal. The pain finally went away after 10 days. He was thinking sciatic nerve but I do not. Guess I'll wait to see if it will come back.
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Wow Lynne, those are some low numbers you got to. May they continue to be that way. Faslodex didn't work for me, which really bummed me out. I was hoping to be able to be on that for a year or so. I am only on my 4th cycle of X, 2 weeks on, 1 week off..
HFC, I don't want to scare you, but FOR ME, on my first cycle of 7 pills, it wasn't until my week off that everything went to heck in a hand basket. I do get a little sleepy and sometimes a bit "woozy".
Gio, I'll try and change my profile. But by the time I'm done with my "social media", it's time to get to work. Plus, I'm having a hard time adding the fact that I am stage IV.
(Edit) Forgot to ask...I get allergies around Feb/Mar, from the Juniper trees here when they pollinate. But it's May and I'm still sneezing and sometimes just have a drippy nose. So, I think I am either developing NEW allergies, or it's the Xeloda. Anyone else experiencing this?
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Sunshine, I have had that sciatic pain before, can we say EXCRUCIATING! And it really wasn't a bone pain either. It was more like muscle, or just in the skin (as it is a "nerve'). Glad it is gone and glad all your tests didn't show anything.
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goldie,
I don't think it's the Xeloda but my nose is always dripping and my eyes are always watery. It was that way before I got on Xeloda. I just assumed it was allergies. I'm allergic to Juniper Cypress, dust mites and cats (I have a cat).
Hugs, Susan
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I have terrible runny nose and runny eyes since being on Xeloda. I don't have allergies, I don't have a cold. I'm not congested, not sneezing, not ill. But my eyes run as if I'm crying and my nose drips clear fluid without warning. I'm constantly reaching for tissues. Totally blaming Xeloda.
Kessala
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Oh yes, I have the watery eyes too. Thanks for the feedback girls.
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Goldie, but my pain was only in the knew and lower thigh. Sciatic nerve pain usually starts at the hit and goes down the leg. Yes it was EXCRUCIATIN! All I know is it is gone now and hope never to return.
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Im worried! Only day 6 and my stomach is a mess. My head neck and jaw hurts as does my left arm. This is only my first cycle. Going by my weight I'm taking 9 pills a day. Is your dose based on your weight?
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Hi Hope, I take 7 500 mg tabs/day. Was 8 but reduced for H&F syndrome. Not sure if it's based on weight.
I have to take omeprazole for my stomach- I get acid reflux, & it helps.
Not sure why you have pain in head, neck & arm. Hope it settles. If it doesn't run it past your onc. I guess it takes a while to get used to a new med tho.
Take care
kt
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hank you! Does it get better? Will my body adjust and the side effects lessen?
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