All about Xeloda
Comments
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JFL, that is so good to know! Now if someone could reassure me that my fingernails will grow back from the disastrous state they are in thanks to Ibrance (paperthin, with noticeable vertical ridges), I will be so happy!
Oh, I have one question already... For those with liver mets, do any of you use any supplements or teas to cleanse the liver? I've been very comfortable using a detox tea, for example, pre liver mets, believing it was removing any toxic drug overload. Now I'm not sure if that's still a good thing to do, or if it could diminish the efficacy of "X" or cause other issues. I'll research it, but just wondering if anyone else already has, and what you decided.
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Good news to report : just had a PET scan and things look stable !
I have been on Xeloda since mid May...started on 2000mg twice daily which was decreased to 1500mg twice daily due to HFS that hit about Christmas time. I am on the 14/7 schedule. Also have been using topical steroid cream on my hands and feet which has made an incredible difference . Plan to see a ONC at Mayo Rochester next week...kind of a second opinion and want to find out more on their clinical trials. Overall, Xeloda has been fairly easy on me...hope it continues to be effective for a long time !!!
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Great news, Stilts! Encouraging for all of us.
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My wife completed her second cycle of Xeloda and her fingers and palm are starting to get darkish all over. Any idea why this is happening and any remedies for the same ?
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Sounds like hand foot syndrome a side-effect of Xeloda - I have it on my hands and my feet. If she gets a full-blown case, her skin will peal off and it can crack and bleed in moveable areas, like her toes. I had a more severe case of it but greatly improved after a lower dose.
Have her put hand lotion in liberal amounts on her hands and feet. This helps - but make sure the lotion doesn't has alcohol which is a drying agent.
Good luck
Amy
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HFS happens because a little bit of the Xeloda leaks from the small blood vessels, capillaries, and causes the discoloration, itching, burning, sensitivity, etc.
Cotton socks and gloves are essential to allow the hand creams to work their way into the tissues and protect the hands and feet.
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The first real Xeloda problem showed up today, foot redness and pain. She's on the full 4,000mg's second week of cycle. A bit of a rash on her forehead but it quickly went away. I'm her caregiver but I'm a combat wounded war veteran with some medical issues of my own. You ever notice how everything piles on you at once.
As a side note my, wife's mother is 93 and a real (insert B word here). My wife thinks of her as the mother on Mommy Dearest, same personality and brought up the same. Her house is to be sold and she's on a rampage about everything.
Does Xeloda really work well on triple negative?
MikeW.
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How did your HFS start out? My hands feel weird, cant really explain it, just not right.
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Keetmom,
Not sure who your question is directed at but I can answer for me. My hands and feet both got bright red and scaly, then when I was on the 4000 mg dose, my feet burned like I was walking on hot coals. I could not stand on them at all. I was ready to quit but thankfully my husband pulled me from the dark place of giving up and letting the cancer win. We saw my onc who lowered the dose and said, if i ever feel that way again, to call her immediately, day or night. I was grateful for her compassion and concern.
Hope this helps. Btw, I did end up with a full-blown case of hand/foot syndrome with large chunks of skin peeling off my feet just like a snake sheds its skin. I also got bloody cracks at the base of my toes which I treated with an antibiotic cream.
Good luck to you - I hope this helps.
Amy
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Amy it was directed at who ever felt like answering it....thanks..right now they just feel tingly.. I see the Dr next week so we will see what he has to say.
I would like to stay at a higher dose if I can..but if needed I will go down
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I had great results even at the lower dose. Pet scan showed remission and no more spots on my liver. My husband is a physician and researcher and he found a study showing that the lower dosage of X is as effective as the highest dose. For me the reduction in dosage has been a life savor. I have a little red ness and very minor peeling, but overall, great improvement of HF symptoms.
Amy
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Did any of you have elevated alkaline phosphate (ALP) after starting Xeloda ?
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Yay, Amy! So good to hear. I worry about being on the lower dosage and 7 on 7 off instead of 14 on 7 off, so that puts my mind at rest.
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I'm on my off week, but keep having mini panic attacks that I've forgotten to take my Xeloda. I never did that on my off week on Ibrance. Must be chemo brain. That hit me hard after only two cycles, or at least now I can blame everything I want to on chemo brain!
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When I was briefly on the trial I had to write down each dose. I kept doing that after I got dropped from the trial.
Very helpful!
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I do that too, Kaption, cuz sometimes I forget.
I also put my dosages in one of those weekly pill boxes with M T W, etc on it, so that's my back up. I can either look in my little note book for the hour i took it or check the pill box 😀.
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Has anyone here had to take an anthracycline or taxol before using Xeloda? I filled my first Xeloda script in Dec but didn't take it until Feb due to radiation. Insurance formulary changed in Jan and they just denied my refill saying I should take an anthracycline or taxol first. We are appealing that decision. I'm Triple Negative with bone mets and don't want to waste time on another protocol when Xgeva/Xeloda combo is showing such good results. I would also prefer not to get another port and go the IV route again if I don't have to. I've had a second opinion at the Univ of PA and my case went before the Tumor Board of my health system. All were in agreement with Xeloda treatment. This is so frustrating
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Believe, you should be able to get it covered on appeal. The insurance companies usually flag more expensive drugs and try to find ways not to pay for them. I think Xeloda was originally approved as a chemo for advanced BC after someone failed anthracycline or a taxane, which is why they would state that. However, I don't think doctors follow that technically for Stage 4, although a lot of patients who started at an earlier stage took one or both of those drugs at the time of early stage diagnosis (it would make more sense to follow that protocol for an earlier stage; I think locally advanced Stage 3 and possibly Stage 2 BC may also be given Xeloda after failing those drugs). I haven't heard of people generally having a problem getting Xeloda covered (many of us have gone from much more expensive drugs, like Ibrance, to Xeloda). I hope you can get it cleared too. I do recall, however, it took me a long time to get the prior approval from insurance for Xeloda. I ended up buying some pills out of pocket as my liver mets were out of control and I was worried about a delay. If need be, call the insurance company every day and ask your doctor's office to help by writing a letter and/or calling to speak to the insurance company. I really had to push all parties involved (Caremark insurance, doctor's office and Caremark specialty pharmacy) daily to get the process completed.
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Believe, I have a similar experience as JFL with Xeloda. The insurance took a bit of time to approve it but it did get approved eventually. Took around 2 and half weeks. Xeloda (generic : Capecitabine) is a pretty standard drug. So I agree that you should be able to win this battle with insurance but your MO needs to help you there.
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JFL and Letmywifelive - manythanks for your feedback and encouragement. My MO has already submitted a letter on my behalf. I'm still waiting for a copy of the denial that provides a number for me to call to appeal also. I don't think the insurance company really wants to hear what I have to say, ha!
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Hello All,
I have an appointment scheduled with my oncologist next week and am trying to prepare. For those of you that I have not met, I was diagnosed as Stage IV at the beginning of January with a right pleural effusion after more than 15 years cancer free. I had a lot of fluid in the lung and so my MO decided we should start with chemo (Taxol) before shifting to anti-hormone therapy.
I don't think I am responding to the Taxol. The fluid is not appreciably less (I have a PleurX Catheter and MO wants to use the reduction in fluid to determine if the chemo is working) and I am still coughing quite a bit.
He initially suggested that if the Taxol was not working we would switch to Xeloda. I am a bit freaked by the possible SEs. I'm working my way through this thread but can any of you comment on how hard this is? Folks seem to be tolerating it but what about the nausea and vomiting? Did you have to control this with meds? I had a terrible time with constipation and, as a result hemaroids, when I was on Zofran during my initial treatment so am not wild about this. And just how bad is the HFS? I'm worried as I have a five year old collie that needs a couple of good walks a day so sitting on my behind for weeks is not really feasible (not to mention that I am the sole caregiver for my mother who will be having a knee replaced in three weeks).
If any of you can give me a sense of what might be in store it would be much appreciated. I've looked at the protocol and it seems that here in Canada they stick to the 14 on, 7 off schedule with dose reductions if SEs are not manageable.
Thanks.
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sadiesservant- the SE and hand foot syndrome vary from person to person.,
The first few cycles (2-4) are the hardest while your body adjusts. I used anti nausea Meds the first two cycles. I didn't need it afterwards. If you eat when taking your doses, the nausea is much better. I got a rash at first but that too went away. I did have some problems with hand foot but a dose reduction made that better. I enjoy walking and working out so think walking your dog will be possible. I actually have the opposite to constipation while on Xeloda.
Like I said before SE differ greatly in everyone. One constant is fatigue. Find time to recoup state during the day if you can.
There will be a low point in your cycle when you feel your worst. It can come on your off week. After s few cycles you'll get to know your body's rhythm.
This is a fabulous thread with wonderful supportive and well informed people.
I've been on Xeloda for over 4 years. It's been good to me. I realize and appreciate that I've been lucky.
Best wishes
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As leftfoot said, it really does vary from person to person. My nausea was very, very light, and only for the 1st and second cycles. I do have some diarrhea at times, but that is easily managed with imodium.
Se's are cumulative, especially with hfs, so start slathering your hands and feet with creams, not lotions...lotions are too light. Be sure to wear gloves when you wash dishes or do housework.
They can adjust the dosage if it's too difficult for you. Get enough rest. Listen to your body.
On the plus side, you get to keep your hair 😃.
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My wife started her 4th cycle of Xeloda and her nausea has been extremely mild so far and improving. Her hands and feet have become visibly darker but so far no cracking or flaking. She is little more fatigued than before but not enough to affect her quality of life.
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Thanks everyone,
You have been very reassuring. As I mentioned, I am thinking ahead as I have no idea what my MO will recommend. I haven't seen him since my original Stage IV diagnosis. I just suspect the Taxol is not doing the job based on how I feel.
If he does switch to Xeloda I think the plan is for only three cycles. We're just trying to beat the cancer back as it takes longer for hormone therapy to kick in. I also worry a bit about using up the big guns early in the treatment. Not sure if I can go back on Xeloda if I have progression down the road.
Thanks again for the support.
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Sadie, in many ways, I find Xeloda easier than hormone therapy. It is pretty tolerable. I would question your MO about whether only staying on it for a few cycles is the optimal move. Xeloda is a specially formulated pill version of 5-FU (an IV chemo). Xeloda's 5-FU component only activates once it gets into the cancer cells, particularly in the liver. Because it has this unique targeted action, there is much less collateral damage to healthy tissue than other chemos. You could give it a try, and, if the side effects are manageable, hypothetically take it until it stops working (hopefully, years) and then move on to a hormone therapy.
My only key side effects are HFS and red, more sensitive eyes. Although the HSF is pretty bad, it hasn't slowed me down much and doesn't significantly impact my quality of life. Many on this thread, including me, work full time, take regular walks (and some of us even run regularly with no issues).
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JFL
I too have trouble with irritated eyes - they are almost always red and very runny like I'm crying, especially in the morning. I didn't relate this as a SE of Xeloda. Is there anything you do to help your eyes? Drops or medicine prescribed by your onc? I'd love to find something.
For Sadie, I was told by the pharmacy rep who calls me once a month to see how I'm doing on Xeloda, that he has a client who's been on X for 11 years so yes, I agree with JFL, you take it until it stops working. That's my understanding too.
Thanks
Amy
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Thanks everyone. I had no trouble with the hormone therapy and am strongly ER positive which I believe is why my MO wants to go this route. The chemo was purely due to my heavy disease load in my lungs - lots of pleural effusion. I don't appear to have disease in my liver but might have a few small spots in my bones (hips). No nodes in my left lung, one possible node in the right (it was largely collapsed at the time of the CT scan) and an enlarged mediastinal lymph node.
I really appreciate the information as it puts my mind at rest if he still wants to go the Xeloda route. I am wondering if I could just go on to an AI again though. Lots of questions for Wednesday!
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AmyQ...My eye dr warned me I'd probably have eye issues on Xeloda. He said to use Blink Gel eyedrops, and not the tears kind. The eye gel is thicker and more viscous so it stays in the eye longer and does a better job. Vision will be blurry for a few minutes, but it goes away. You can get it at any drug store...Walgreens, CVS, etc. 😉
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AmyQ, I use various over the counter drops - gel drops for dry eyes at night and more standard, dry eye/allergy drops during the day. My MO doesn't hear many patients complaining about eye issues. He recommended going to an optometrist. If I went to someone, it would be an opthmalogist, who has more experience with more complex eye issues. I did go to an opthmalogist for taxotere eye issues and may try to go back to him. Need to get on that!0
