All about Xeloda
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Today my MO said we could consider Foundation One in the future but she wants to wait, she sounded like it could only be done once but I would think it could be done again as you said, JoynerL. A liquid biopsy sounds good.
Denny123: If you have to increase Xeloda, hope it isn't too hard on you.
Saw something in the news about a new oral paclitaxol.
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Elena, initially the solid biopsy was the only one possible with Foundation One. I had one after a bone biopsy when Ibrance/Faslodex failed in December 2018. Their liquid biopsy is new, this year, I think. There's information online, I'm sure. After reading about their approval, I asked my MO if I could have one done, and she replied that there was no need right now (as I'm stable or appear to be) but that she would order one immediately at any progression.
If you want to see what one looks like, let me know, and I'll PM you my report.
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I just saw the the oncologist. Both she and the pharmacist were surprised and a little alarmed at the severity of my hand and foot syndrome. Apparently it’s worse than I thought. So I’m to stop the Xeloda for at least two weeks and when I start back up, the dosage will be reduced.
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Hi, all. I just got a call from my cancer center's pharmacy to set up delivery for my first Xeloda cycle. I am reading the nearly 400 pages of this thread. Is there anything you would have wanted to know the week before you started taking it?
I'm thinking I need to start flossing religiously to keep my mouth healthy and use gloves for cleaning to keep my hands from injury. I ordered some booties with icy inserts for my feet and a neuropathy supplement with ALA and B12. I've started a daily mental health journal (20 minutes a day of free-writing - no editing, no stopping to think, just get all the stuff down on paper and out of my head.) Making increased effort to reach out to friends. Learning to cook some simple healthy dishes. Going to get caught up on my paperwork and housekeeping. Exercise.
Anything else? This will be my first real chemo, and I'm a bit scared. Now I have multi-organ involvement, I'm feeling especially mortal.
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I just sent you a PM with my saved list of suggestions from the string. I hope that it helps-
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JoynerL: Thanks for the info on the FoundationOne biopsies. It will be helpful when I speak to MO about it.
NineTwelve: Those were some good positive ideas for preparing for new treatment. Hope it works well for you.
DiveneMrsM: Hope that hand and foot clears up and you can start again on Xeloda.
Just took my dose of Xeloda and I'm off to radiation. As one of you said, it does feel like a Groundhog Day sometimes.
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NineTwelve-good luck! Some of us get sore gums so don't go overboard with the flossing. I had purchased a new Water Picflosser and it hurts my gums, so I quit using it.
Exercise while you can, but if it involves the hands and feet, be mindful if they start to hurt.
I use Aquaphor day and night-it helps me the best!
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912, Welcome to Xeloda. I am on my 10th cycle of 28 days each cycle (7days on/7 days off).
At the start, pay attention to severe diarrhea, nausea and high grade hand/foot syndrome. You can get prescriptions for the diarrhea and nausea, but you shouldn't suffer with any of those SEs. Notify your MO for any of these SEs as he/she might have you stop and restart with lower dosage. Grade 3 HF involves blisters, peeling, intense redness, extreme pain/burning when walking. Do NOT ignore these symptoms..call.
At my higher dosage, I had red spots crop up on my skin. They went away at lower dosage. Capecitbine breaks down to 5FU.. 5FU is in derm topical creams used for preskin cancer. My MO said my chemo was also taking care of preskin cancers from the inside. She was either joking or serious!!
Anyhoo..just pay attention to HF, because you don't want to keep going off this med to heal. Dose reduce is the solution.
Also find comfortable shoes that don't put undue pressure on feet. Ice or cool water bath as needed. Use kitchen gloves for dishes or cleaning. Moisturize your feet and hands to prevent cracks. I use the Udderly Smooth cream with 20% urea. i occasionally use Aquaphor for the more tender areas until healed. Aquaphor really helps the cracks or pitting on nail pads. Edited to add that I also wear nitrile gloves at night with a moisturizing cream.
Stay away from hot baths and take warm quick showers.
At night I wear silicon gel socks and alternate with cotton loose fitting socks.
I started at 3300mg/day, then 2800mg, then 2300, now 2000 mg/day. Also started at 14 on/7 off, but changed to 7/7 at first reduction.
I had widespread liver mets upon progression. .grew fast within 3 months. I am stable now from latest liver MRI..no new liver mets and slight shrinkage from known lesions.
P.S. I walk and ride my bike. Keep active, if possible.
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Sitting here in tears because I'm too scared to take these pills. Got the go ahead from my oncologist, but I can't bring myself to swallow literal poison.
Not sure how to psych myself up for it.
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NineTwelve - my wife took Xeloda for about 18 months starting in January 2019 (she has moved on to another line of treatment). She had minimal side effects and found it very manageable. My obeservation is that a lot of the hand/foot syndrome issues are related to how much you use your hands and feet. I am doing most all of our household tasks so Liz just needs to rest and heal. I think this makes a difference. The Xeloda did a good job with Liz's liver mets.
I'll pray that you have the strength for the treatment and you have minimal side effects like Liz did.
Grant.
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Thank you, Grant. I'm alone. No one to do the cooking or shopping and no one to tell me I'm not looking well. A friend with lymphoma just posted on FB that her parents found her on the floor unconscious. I guess that's what's frightening me today.
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NineTwelve - stay strong. I know it's easy to say from my position but I'll keep you in my prayers.
I'm not sure what your dose is but Liz was on 3300mg daily, 14 days on and 7 off for the 18 months.
Grant.
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Ninetwelve, Due to 2 severe reactions to my initial IV chemo, I completely understand being nervous about a new med, especially if no one is around but I’ll just say that I started Xeloda in September and noticed nothing for the first few days. After that, I had only nausea and vomiting, which we’re resolved with anti nausea meds. There was nothing weird or off about the pills, I didn’t feel dizzy, faint or anything. My first scan after taking them came back NEAD in the body, I also have stable/improving brain mets.
If you’re still worried, can someone come spend the day with you or can you arrange a “check in” plan with someone. Maybe you can text or call in the morning and evening with a plan if you fail to check in on time? Perhaps that would give you peace of mind?
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Thanks, illimae. After a good cry, I decided to start tomorrow. I'm cleaning and cooking today, and trying to think of which friend (or more likely friends plural) can be counted on to be my check-in buddy. I'm glad X has been so successful on your mets and I hope the nausea can be controlled soon.
Now for laundry, and a marathon viewing of Bridgerton.
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NineTwelve-what is your dosage? I have been on 2,000 a day and just get HFS. It is tolerable. I live alone.
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Nine Twelve, I, too, am on 2000/day, 7 days on and 7 days off. My primary side effects have always (24 months now) been hand and foot syndrome, which I manage with varying degrees of success, and some fatigue. I have never had nausea as a side effect. I don't believe that everyone has dramatic side effects. You may not, either. Good luck to you! Great idea on the "check-in" buddy!
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My starting dose will be 3000 a day, 14 days on, 7 off. I have not yet started. But I reread the list of helpful hints and I placed an order for some gloves and socks and drugstore supplies. Today I will stock up on frozen meals and canned soups.
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Ninetwelve, I’m in the same dose. So far, a very important habit has been lotion you hands and feet nightly, I use CeraVe because it works well and doesn’t feel greasy. Will you be taking your morning dose before noon? Should I check in on you here or am I being too intrusive? Sometimes a well meaning encouraging nudge can feel like nagging, which I don’t want. You can do this 🙂
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NineTwelve, I am on 3000mg 14 days on 7 off and am facing my second scan today since starting. I am doing ok. I use Eucerin Advanced Therapy on my hands twice a day, and cream with 20% urea for my feet before I go to bed, and am managing the HF just fine. My biggest complaint is fatigue and loose stools (although not diarrhea). I occasionally have a bit of nausea but it is quickly remedied with Zofran. Sorry if this is TMI but wanted to be totally honest with you. My first scan taken three months ago showed no activity at all even in my liver where I had 10 spots. I am praying for the same results today. This regimen is totally doable. I am blessed to have a husband and adult daughter (with a 5 year-old granddaughter) living with me although I still cook dinner for us all and do my laundry, etc. I have a housekeeper come in every two weeks to do the heavy cleaning, but otherwise we manage. I will pray you should be able to manage fine. It is worth keeping this disease down so you can enjoy life more.
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Nine Twelve, I'm sorry for the anxiety you're having with beginning Xeloda. It's very understandable. I wish I could find the words to aleve your concerns. Sometimes I guess you just gotta get on that horse yourself and ride it to find out how smooth or rough it's gonna be. We are all different. Tho you may have some side effects, it's possible you will tolerate Xeloda reasonably well. I think many of us learn how to make adjustments along the way. I did 3,000 mg for nine months but finally the hand and foot issues required a dose reduction. Even so, the med has been very tolerable, I only rarely had diarrhea or nausea, both quickly taken care of with peptobismol.
You refer to the Xeloda as poison; I myself don't see it that way. But if it is poison, it's targeted to get rid of the cancer we don't want, and I'm okay with that. This is the miracle of modern medicine, drugs able to destroy disease while leaving the rest of the body in good enough shape to carry on. I hope that is the case for you; for all of us. Best wishes to you!
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NineTwelve....I agree with Divine about not calling Xeloda poison. I have been on IV chemo for almost 19 years and am still hanging in here. This is my 10th chemo and I was afraid of all of them. But only one very new clinical trial (Poziotinib) was nasty.
We are here for you, so just write whenever you can. I bought a big bottle of Immodium before I started, but never needed it since I am constipated. We all react differently.
At your first sign of sore hands or feet, call you onc and you will probably get a dose reduction.
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NineTwelve: I've been on Xeloda for a couple months now and have had no severe side effects so far. I hope it treats you kindly too. Right now I'm taking it with radiation to treat a lymph node and a progressing primary breast tumor. Hopefully they'll work together to slow things down a bit. I bought Aquafor but haven't needed it much for hand and foot.
Denny123: How long did Xeloda work for you, or are you still on it? Your experience is so amazing and encouraging to hear about.
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elenas-So far, I have been on Xeloda for 3 years. I went for my Herceptin today, and when I questioned the fact that I might now have rib mets, my nurse said that my onc now isn't sure.
The spots as seen could be from a previous rib fracture. So I should find out in April with my next scan. I am only on 2,000 a day at 7/7, so it is doing a good job since I am an unusual case.
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Denny123: I went in for Herceotin today too, for my other cancer in the left breast. I see you originally had some liver mets. They also just found some on my last scan. Hope they can treat them when I'm done with radiation on my right breast. How were yours dealt with? Y90? Did you ever have genomic testing or been in a trial? They also see some lung nodules and slight plueral effusion. I did have the plueral effusion four years ago which cleared up on Taxol and Ibrance/Letrozole. I was not offered surgery as I see you had, which makes me wonder if I would have had more progression free time. A new study just came out that shows possible benefits for stage 4 for surgery. I feel I would have been better off if they had agreed to surgery.
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Elenas...19 years ago, they did surgery first, then chemo. Three liver biopsies missed my original liver met, so it was assumed to be just a lesion....it wasn't. I had the BMX, A/C & Taxotere, then rads. So a year later, my CT scan showed that my liver was filled with tumors and I statically only had a year to live.
I went on a clinical trial of Gemzar and Herceptin and in 9 months my liver was clear. 10 years ago, I had a recurrence of 2 chest nodes. After Kadcyla quit working, I had Foundation One testing that showed that my Her2+++ had changed to Her2- Somatic (gene mutation). I then went on another clinical trial of Poziotinib, which was super-nasty. But it cleared out my nodes in 8 days. I only lasted 8 days on the stuff because of the horrible SE's.
I don't think that my BMX was necessary, and I am very lucky that I didn't die from the liver mets. But not all oncs agree. You need systemic chemo and that could very well completely clear out any residual breast tumors, I think. But everyone is different.
You could eventually have a BMX if necessary.
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I took my first dose of 3 Xeloda capsules two hours ago. Am surfing the web with my feet up and I have a jar of ice cubes to handle for when my fingers are tingling. Not sure if they are, or if I'm imagining it, but the ice is soothing anyway. My nephew dropped off some homemade split pea soup for lunch later on. I want to thank everyone who encouraged me and gave their own experience with this medication and I want to wish you all a happy New Year. Stay well and safe and never be too busy for joy.
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Yay ninetwelve, that was a big first step! Sending good vibes for smooth sailing and easy or zero side effects.
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NineTwelve..hang in there! I read on here to put my feet on ice packs right after taking the pills. But my specialty pharmacist told me that was useless since the pills have to go through our whole system first. They don't just suddenly attack the hands and feet.
So that makes sense.
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Hi All. Just a quick note to let you know I just received the news from my latest scan. It says "Stable exam with no suspicious focus of FDG avid disease" It ticked off all areas including bones, liver, lungs, head/neck, even skin. So hang in there! This was my second scan while on Xeloda so to me it is worth it!
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Oh, IntoLight...fabulous news!! Hallelujah and happy New Year to all!
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