All about Xeloda
Comments
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Hi Ladies! I just wanted to provide a quick update. (from page 375) I was put on Xeloda for liver mets but was concerned about my liver function tests rising after just a few days. I did end up being put in the hospitial for a day of tests, tests, and more tests after my bilirubin continued to go sky high. The group of doctors decided it was the Xeloda causing the problems so took me off that and sent me back to my oncologist for something new. Between the Piqray and Xeloda and radiation, my body has just about had it this year!
Now I'm on chemo IV. Just had my second round of Paclitaxel. First dose at 50% and second at 75%. This next week we'll go to 100%. My liver function tests began slowing moving in the right direction after the first dose so maybe we're finally on the right track. Lost all my hair within the first 2 weeks but it's the right time of year for it. : ) Otherwise, feeling fairly well; just fatigue and lack of muscle strength in my legs but that's been increasing all year.
So many different drugs and different reactions! Hang in there everyone and don't give up! There might be something better right around the corner.
Janet
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Hi Janet, Thanks for the update and I hope that things continue to improve for you!
Denise
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Hi Janet. Glad to hear IV chemo is moving your numbers in the right direction. Fingers crossed the improvement continues.
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Best wishes, Janet!
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hi hartrish
.is xeloda working for you ???how many months you have been on xeloda??
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Hi Ladies,
I am a breast cancer survivor, but I am on her for my Mom. She will begin taking Xeloda next week (2000mg twice daily for 14 days of 21 cycle). She is of course worried and concerned so I was hoping you all could share your wisdom. Her history: She is 77 years old. Her initial biopsy showed that she was estrogen positive, but her pathology report after her mastectomy showed that she was negative. They initially put her on Letrazole hoping for shrinkage, but it did nothing. She then did Taxol - still no shrinkage, but no growth either. At that time she had a mastectomy and is finishing up radiation this week. Any advice you have to over would be greatly appreciated. Her journey is different than mine - as most seem to be. Always thankful for the amazing warriors in this community. Thank You!
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Ladies,
I am so sorry - I just realized I posted in the forum for Stage 4/Metatastic Breast cancer. I am so very sorry. I will check for another forum.
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ML, the good news is that it sound as though your mom is not metastatic/Stage IV! That's great news!
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ML, no worries. I will begin 2000 mg Xeloda twice daily tomorrow, 14/7. I'm 61 and worried as well as I haven't yet seen anyone who's taking that amount, so I'm interested in how your mom does on it. Best wishes and hugs to her and you.
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Bliss58, I started out at 1800mg twice a day. The first cycle went ok, some issues with my upper digestive trac but nothing I couldn't handle. My second cycle, 10thday I started getting hand and foot problems so I'm now taking 1500mg x2
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Mls1, thanks for telling me your experience with Xeloda for the first two cycles. I know everyone is different, but it does help me to know early what I might experience. Thanks again.
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Hi! I'm not a regular poster but I did want to share my latest CT/N bone scan results. No shrinkage of anything but no new mets either. A few weeks ago, I was a mess. Slept day and night, had bad dizzy spells, lot of falling down, broke more ribs. My Onc took me off Zeloda for three weeks. Took awhile but I gradually started feeling better. When he put me back on it, it was the 7/7 schedule. At apt yesterday, he said you sure look different, nice completion etc. (since that long detox no more falling and I don't need naps anymore! He said my numbers were great we'd just stay the course. (started zeloda 8/2020)
Then he told me something interesting, I was on taxol for 8 mos and it was shrinking the hell out of my breast tumor (from 5cm to 2.5 cm. Quit taxol 1 yr ago because the necropsy in my leg was getting too bad. Went straight to Zeloda. So for the last few mos. my breast tumor went from 2.5 to 4cm! I asked the doctor how can he say it's working. He said don't think of the mass as all cancer. CTs have showing more and more calcifications inside the mass. Which he said could be scar tissue or dead cancer cells trapped inside the mass. I'm really glad he explained that. It's not all live cancer cells.
Then he said you know you are really doing good for having MBC for three years. ( I refused surgery) Needless to say I left appt with a big smile on my face.
Moral don't let yourself get too toxic.
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Bliss..agree with Snooky. Watch for any signs of toxicity when starting Xeloda. Report immediately. They need to know so your dose can be adjusted.
My MO was greatly displeased with me for not contacting them sooner as I had bad Foot redness, swelling, debilitating inflammation. (Strangely, not hands), plus diarrhea. She said by not calling, I had to stay off the drug longer to heal. Better to dose reduce.
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Bliss, that's really good and very important advice from Sandi. Snooki, glad to hear you're doing well.
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Thanks all for reiterating the need to watch for toxicity on Xeloda. My MO called a couple days ago to tell me just that. She said to stop taking the drug and call her immediately. I'm happy to know she's ready to reduce the dose if needed. Good night to all.
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Bliss, I started at 3300mg/day. Then based on SEs, dose reduced to 2800, then 2300, then 2000. At 2000mg/day, I was switched to 7dsys on/7 days off. I just could never make it to 14 dsys on.
I am now increasing by adding 150mg/day per cycle. I am at 2150mg/day now and watching SEs. We want the best efficacy to keep liver mets dying but also give me a break from SEs.
Keep us posted. Once the dose is worked out, it is not so bad. I like it better than Ibrance/letrozole..so hoping it gives me a long time like I/L did.
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Well, my stay on this board has been short. Scans today showed that after 3 cycles of Xeloda, it’s not working. I have a bunch of fluid in my lung that needs to be drained, my lung nodules have increased, and now I have a bone met in my back. On to Erubulin next week. I’m not panicked, but I’m disappointed and sad. I trust my doctors, but I’m scared. I went from doing so well on Ibrance/Letrozole that we were talking about going to 6 month scans instead of 3, to failing on both Ibrance/Faslodex and Xeloda in 6 months. I could use any extra prayers anybody has to give. Thanks ladies.
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LVGirl, I'm so sorry Xeloda didn't work for you. Understandable that your sad, scared and disappointed, but I'm glad you're not panicked and trusting your team to see you through. Here's hoping Erubulin will do the trick! I've never gotten to 6 month scans. Seems like it's a jinx cuz every time MO mentions it, something else crops up. I don't pray, but I'm holding you in my thoughts and heart for positive news.
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LV, you're surely on my nightly prayer list. Good luck, my dear!
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LVGirl, I am sorry to hear Xeloda is not working for you. I will be praying for you and watching for your next success. I am not far behind you--in my second cycle of Xeloda praying for good news. I have been having some tightness in my chest but I have not had any lung mets so far so I am wondering what is going on. Take care.
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LVgirl903..I am sad that Xeloda didn't give you better news. Can you ever come back to it or was it a complete failure? I will pray for you tonight..hoping you will be strong and rested for the next drug.
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LV...sorry that you have to move on. You will be in my prayers !!
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Thanks so much, everyone.
SandiBeach, I'm not sure if it will be an option to come back to it. My doctor said that I wasn't on it for very long, but it probably should have done something by now. It's a bit of a scary time right now because I failed Ibrance/Letrozole at the end of January after 21 (I think) cycles, then failed Ibrance/Faslodex at the end April, and now Xeloda in July.
Just really, really hoping to find something soon that will work and last. And really, really bummed about probably losing my hair. And kind of terrified about getting stuck in the chest with a giant needle. I've been able to carry on with a pretty normal life up to now, so it feels like a big loss to have to go onto a treatment like this. But if it works, it works, and that's all that really matters.
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I have an oncology appointment on Monday, when I am expecting to be given a start date for taking Xeloda. I was taking Ibrance and Faslodex for 26 months before it failed me. I will try and read as many of the posts here as possible, but would appreciate any hints ,tips, advice so I can prepare for SEs in advance. Thanks.
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LV..just curious. Have you had a recent bx to determine if you have actionable mutations? Maybe this could lead to different, more eff effective tx choices?
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Denny10, welcome. Go back to around April 2020 and there is some good advice.
1. In the meantime, pay attention to SEs and call your MO before they get bad. Esp diarrhea and HFS. Better to dose reduce then be off this drug weeks to recover.
2. I use Aquaphor at night on feet with loose fitting socks. I use Udder Smooth during the day. I avoid going barefoot to cause unnecessary friction. I keep hands lotioned. Use gloves to wash dishes, garden, etc. Keep hands protected. On occasion, I wear food service gloves at night after applying Aquaphor. My main problem is soles of feet.
3. Use ice packs on bottom of feet when feel like on fire. Wear socks to protect skin from ice damage.
4. Drink lots of water..like a gallon per day.
5. My MO said to take OTC Pepsid AC for acid stomach,/reflux.
6. Keep showers warm, not hot.
7. I purchased blue gel spa socks plus heel gel socks to wear at night when needed.
8. You might get red skjn spots, esp in areas exposed to sun (I did). Capecitabine converts to 5FU in liver. 5FU is known to be used in creams to help with precancerous lesions. So a two for one cancer tx. Ha.
9. Wear soft cushioning shoes with memory foam to protect feet from any friction. I do wear flip flops around the house with toe socks..with plenty of lotion.
OTHERS FEEL FREE TO ADD ON TO THIS LIST!
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Thanks sandibeach5, i like to be prepared and this is a great help.
Can anyone recommend a brand of toe less gel socks they have tried?
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Sandi,
Back in February, results showed that I don’t have an ESR1 or PIK3CA mutation, but that changes in ARID1A and GATA3 were detected, though I don’t think there are any treatments for those yet. Earlier testing showed that I’m BRCA1&2 and TP53 negative.My doctor did mention that I do appear to have a small amount of Her2, so the next step after this is to get into the Enhertu for low Her2 trial.
Just hoping something will work at this point. I don’t care what it is, as long as it can get me back to the great shape I was in months ago.
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Welcome Denny! (almost my ID).
The above hints are great, but I also use silicone socks at bedtime, since I found that cotton socks just absorbed the Aquaphor. And I also use food service gloves on my hands over Aquaphor at night.
You want gel socks with toes, since your toes will get dry and cracked too. I order mine from eBay, but since they come from China, it takes a few months.
I use Tea Tree oil all around my toenail cuticles every morning. Betadine when the nails get sore and inflamed. And Bacitracin & band-aid for and and foot skin splits.
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