All about Xeloda
Comments
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Another tip for finger pad cracking. I use chapstick on cuticles and finger and toe pads..seems to work. We will see.
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So looking for advice here - I have an appt with MO tomorrow and while I'm there I'll be getting a zometa infusion. Last time (which was my first time) i felt pretty crumby the next day.
Is there anything i can do/take to minimize that?
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Drink lots of water the day before and then after the Zometa. Ask for a slow drip of at least 30 minutes. I think they can push it through in 15 minutes but many of us seem to tolerate it better when it is administered a little more slowly.
Practice self care. Pamper yourself the day of. After the zometa, I would often go to lunch with my son who used to go to college near the hospital. It was something nice to look forward to, Or I would get take out for dh and I for supper so I didn’t have to cook. Sometimes it is more the mental part of being in the hospital environment and interacting with all the medical personnel that causes me to stress out. i have learned not to minimize those feelings and make the day easy on myself where I can.
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I got Zometa last week for 1st time (had side effects from it for 2 days) but remembered the nurse saying that some people take Claritin in the morning, she also mentioned drinking 16 oz of water before and after the infusion. I asked the Bone Mets thread & they said taking Tylenol before the infusion helps. As Divine mentioned, they said a slower drip helps. I have also read that with each infusion the SEs lessen.
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Hello ladies. My wife Polly got through her first week of Xeloda. She's been using the Udderly Smooth 20 on her hands and feet and the gel socks at night as advised by many of you.So far so good. She has noticed some swelling in her lower legs and ankles. Is that common?
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BLMike-she should call her onc about swelling!
Sandi - I also grab my Chapstick at times! I have them everywhere.
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Deanders, yep, take a Claritan the day before and the day of if possible. This really helps. Also I agree with plenty of water and requesting a slower drip. I have been on Zometa for four years now and do well with the above.
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BLMike--of course, always talk to you doctor. In my direction sheet that came with my Xeloda, it said to drink 3-4 qts of water/day. Realistically I get 2-3 but I DO have a 16oz cup with me all day. A couple weeks ago I didn't and noticed swelling in my legs by night, especially if I was sitting in a chair for a long time so I started propping them up and my husband would take lotion and rub them going up towards the heart. I would get up & pee twice on those nights and they'd be back to normal baby morning. I realized I just wasn't drinking enough if I didn't have a cup with me at all times.
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DevineMrsM - Great advice about pampering yourself. Back 13 years ago Liz and I would do something special during every treatment. She did things like purchase a new hat for treatment day.
Liz just had her Zometa yesterday. She is taking it easy today and feel pretty good as far as her Zometa infusion goes. No Claritin, just taking it easy.
As always - lots of prayer to all of you
Grant
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Question: If you have to miss a dose(s) to recover from fire feet, do you add it back to the end of your cycle-thus extending your cycle?
I have a call in to my MO to ask that same question. The drug pamphlet said not to make up missed dosages, but didn't know if that meant to not double up on one given day or not to extend cycle.
Thoughts appreciated.
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I have had to skip days now and then. I was instructed to start up again as a new cycle, thus changing my start day. Don't double up the pills!
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SandiBeach, I was told by my onc not to extend the cycle if I have to miss a dose
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Thank you Denny123 and Mls1.
I got a call back from my MO. I am to finish current cycle and not make up missed dosages, plus dropped back to 2000mg/day.. It is scary to miss doses, but needed to heal feet and thank goodness I got it under control with just 3 missed doses.
But next time...who knows.
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Sandi Beach--I had to skip a dose 2 rounds in a row. The H/F would come about day 4 or 5 and I would skip that night dose and email my MO. Each time she told me to reduce (it stays in your system for 2-3 days so you still have it circulating in your blood). I'm on 7/7 so it would be for a few days. She said this is a marathon not a sprint so no need to get permanent tissue damage when we can find a sweet spot of reducing SEs but still get the med in. This time I was reduced from 3000 to 2000. On day 7 my foot tingled but that was it. So nice not to be H/F pain. Unfortunately had more achiness because of the Zometa infusion mixed with Xeloda.
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HI . if its okay can I ask how is lizo doing ?? She is on biclutamide ??? Does it works for her ?? How about her brain mets ?
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Thanks all re: Polly's swelling. She did reach out to her MO. They did an X-Ray and Sonogram, and both were negative. The thinking now is it's residual reaction from her time on Piqray. Her MO wants to give it another 2 weeks to see if it resolves. Hmmm. She is going to drink more water.
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Andish - Funny but I've been deleting most notifications from the forum the past month or so. No particular reason... I just read this notification from you.
Liz is doing okay... She was only on bicalutamide for about 3 months until she had some more progression in her lungs. All other areas are more or less stable. Liz doesn't have any brain mets but she does have some mets in her head below and behind her ear. They seem to be sort of boney and they can be seen pretty clearly. There has been some growth in the head area since June as well.
She is on her 3rd line of treatmet. It's a combination of oral cyclophosphamide and methatrexate.
A CT scan in June found "something" in her glute. It seems to be deep inside around the muscle. They are following it but it seems to be the source of a LOT of pain. It is really affecting her mobility so she uses a cane and can't walk distances. This is killing her because she is an athlete at heart.
She doesn't like taking pain meds but takes a 1mg hydromorphone about once or twice every couple of weeks.Thank you for asking about Liz, you can ask anytime.
Prayers for healing to all of you.
Grant.
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thank you for your respose .I wish Healing for lizo . And why they didnt start her IV chemo ??
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Andish - Liz hasn't had any IV chemo yet (since 2018). The only IV treatment she gets is Zometa every 3 months.
The next line of treatment will probably be IV paclitaxel
Grant..
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Hi to all today. Sending positive thoughts to Liz and others too. I just finished my first 7 days of Xeloda and am on the 1st day off. I don't know what I should expect so soon. I haven't noticed anything in the way of side effects yet, maybe feeling slightly fatigued but it could have been from something else. Makes me wonder if Xeloda is doing anything. How long does it usually take for it to work if it's going to? My primary tumor is to the skin of my breast and I'm terrified of that. My MO talked about surgery again, even though two surgeons earlier had said it wouldn't help. I'm pretty strong but I don't know how I could cope with an open wound. I'm hoping Xeloda can have an effect. I go in to see MO this coming Wed. and she's not checking tumor markers yet, just a followup.
Also, has anyone had high co pays with Xeloda ?. Here in MN, they have medical assistance for breast cancer that doesn't go by income and asset limits. So that was a blessing. But now, I was forced on mediicare/partD so after the first of year, I'm wondering about the cost I may see with Xeloda. Just wondering what others experience has been. You can get ExtraHelp for Medicare Prescription, but my income may have been too high. I understand that the co pays for Ibrance were quite hight for some.
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Hi elenas, I think it depends on what supplemental you have to Medicare. Our co-pay is extremely reasonable ($10) but my former employer has a special supplemental agreement so I know it varies. That's why it is so important to "shop" Part D supplements. I think the SEs vary also. Mine got worse the further into the treatment I went but I am also on 2 weeks on with 1 off.
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Grant-Good luck with Liz!
elenas----you definitely need a supplement to Medicare. Also ask your chemo to submit a "coupon" to the drug company. That usually makes the pills free.
My SE's were usually worse a few days into my off week. But after 2 3/4 years on X, the SE's now can happen anytime.
No idea how to know if it is working. It has kept me NED for 2 1/2 years so far. Next scan will be in Nov.
Denise
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Hi , I had an appointment with my oncologist today, after 3 cycles of 3,300 a day of xeloda he is my dropping the dose to 2,600. I have been getting increasing side effects; lethargy in mind and body , hair thinning and hand and foot problems that got worse 2 days after I stopped taking madame x. He said probably my body does not flush the drug away quickly, so a lower amount should still be effective and it is about getting the balance right , as everyone is different. My blood results look OK, so now have to wait for a scan in 3 weeks to find out what is happening. Scanxiety begins!!
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Denny10-that sounds a lot better!
Typically, the SE's do get worse on our off-week.
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Denny, sounds like a good plan. I talk with my onc Thursday and am hoping for a reduction also. I am currently on 3000mg.
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my last round was dropped to 2000 from 3000. SO MUCH better! No H/f problems. Just intensified Bone pain from Zometa infusion mixed with the chemo.
I gave a question, I have had a couple swollen lymph nodes in my neck since July. Many of my drs were aware and the oncologist felt them each time I saw her. They’ve gone down considerably except 1 is still a bit larger than the others. Last appointment I had her feel then again and she thinks I have cancer in my lymph nodes and made it sound like most Stage IV do. She said she didn’t want to remove and due to risk of complications. Do you guys know if it’s in your lymph nodes? Is that how it spreads?
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Thanks for the encouragement about dropping dosage, I have had mixed emotions; wanting to feel better but not risking further progression.
Pamela, MBC is often found in lymph, lungs, liver and bones, mine is in the armpit lymph node and right lung. I don't think the 'experts' can predict when, where or in what order the cancer goes, we are all different. I hope they find you a treatment to help.
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Pamela, at my last PET scan, some "avid focus" and slight enlargement at the periclavicular node (behind my left clavicle) was noted. My MO and RO wanted to use stereotactic radiation (SBRT) to zap it into oblivion. I started the first of 5 SBRT treatments yesterday. Fingers crossed for success. My RO noted a 90% success rate. My concern is whether something malignant has already escaped from that node.
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Hi Joyner. Sorry to read slight progression but it sounds like you jumped on it quickly. Praying it takes care of it all.
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Pamela-does the CA show up in your lymph node on a scan?
I had a recurrence in 2 chest nodes 10 years ago, and had Kadcyla for those. They didn't spread anywhere and were hanging around for 6 years.
Granted, since I am Stage 4, the CA is in my blood stream anyway.
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