All about Xeloda
Comments
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I wanted to thank everybody for their quick responses for a new Xeloda/Capecitabine user. My oncologist agreed that the whole forehead only rash - which has faded considerably during my week off - was a 5 FU reaction and a win/win as far as side-effects go. There have so far been no other reactions, but it is my first cycle so time will tell.
And it does turn out that providence put me on Xeloda/Capecitabine at the right time. My brain MRI/Contrast on 6/5/20 was not good. My 6 month check came back with a swarm of 10 micro brain lesions/mets. My clinic has fast tracked me for whole brain radiation starting next week and I'm already on Dexamethasone for the brain swelling. Turns out that Xeloda/Capecitabine is a good drug on its own for brain mets and is now a corner stone drug for a combo with a new drug - approved by the FDA in April I believe - called Tukysa/Tucatinib which along with Herceptin/Trastuzumab. Phase III trials were amazing. Along with the whole brain radiation my oncologist is already consulting with the clinic Jedi council to see if I'm a good candidate.
Breastcancer.org has a great article on the combo - https://www.breastcancer.org/research-news/adding-tukysa-to-tx-reduces-brain-lesion-growth
Word of warning friends: When you do the inevitable Google search if you've been diagnosed with brain mets make sure you put at least a 2 year limit on the search. So much has changed in the last few years that those pre 2018 or 2017 search results will scare the dickens out of you. So much has been learned over the last few years it's amazing. There are a LOT of alternatives for PFS and even longer.
Thank you all again for your gracious help and I will stay in contact as a Xeloda/Capecitabine user and share my solutions along with yours. I'll also be over on the 'Brain Mets Sisters' forums as well.
Be safe and be well, everyone!
- Kathleen
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Kathleen-many prayers for you! My onc is very excited about Tucatinib. I am currently on Hercpetin & Xeloda, so I might eventually have Tucatinib when/if I have another recurrence.
Keep the faith!
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After 5 months of not having had a CT scan ( my 3-month scan scheduled for late March got bumped because their radiology department closed down except for emergencies until this past week), I finally got scanned on Friday and the results were great! Both the radiologist and my MO agreed that there had been significant shrinkage in my liver tumors and no new lesions! Although my tumor markers have increased quite a bit, the rest of my blood work was good and there are no indications of any new activity anywhere, so I will take those results.
I'm over the moon!!!
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Congratulations Katty!!!!!! Might i ask what your dosage is? I'm on 1000 twice a day and while its keeping progression at bay, it's not killing cell. I know no progression is good. But
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Snooky, I'm on 3000 per day with 7 Days on and 7 days off. I'm having my refill shipped overnight today. I've been off of meds for 3 weeks, one for recovery and two extra weeks off because the refill schedule got out of whack in MDA's system, but my doctor and I finally got it all straightened out on Friday!
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Denny123 -
Prayers and lighting a candle for you, too - and everyone else here as well. My oncologist was equally excited about the Xeloda/Capecitabine, Herceptin/Trastuzumab and Tukysa/Tucatinib combo. I've done further research and it is a very exciting advance in the treatment of brain mets. I've just started my second cycle of Xeloda/Capecitabine this morning and so far the only side-effect other than heartburn is some slight dry skin on my feet and hands. My dose has been lowered for the duration of the whole brain radiation, but will be pushed back up when the treatment is done.
I know this is the Xeloda/Capecitabine forum, but since it is in combo with the Herceptin/Trastuzumab how have the side effects been with that?
Keep the faith, be well and be safe!
- Kathleen
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Kattysmith -
That is great news! There's nothing like a good scan report to make you go out and do a happy dance that scares the neighborhood! Especially if it's over the moon!
Be well and be safe!
- Kathleen
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Katty - GREAT news about your report!!! Very happy for you and praying for more good reports!!
Liz had her regular 3 month scan last week and her report showed a couple of new spots in the left lung but right lung spots have resolved. It also showed something in her gluteus muscle. It's very close to some surgery she had last year so an infection is possible but she is showing no signs of infection. It's location is very uncommon for breast mets so they are going to ultrasound and possible biopsy.
It's a difficult time here in Toronto (and I suspect everywhere) for appointments. I've gone to every appointment for 13 years with Liz and I have to wait outside for all appointments, tests and treatments. I just sit outside and pray... I understand the Covid safety concerns and I agree with them. It's still difficult.
Sending hugs and prayers to all.
Grant
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Katty! Great news! Keep up the good work!!!!
Lizo1-Good luck with Liz! My scans often show weird stuff, and my onc just tells me it depends on who reads the scan. Then the next scan shows nothing there.
Kathleen....thanks! Herceptin, which I have had for over 12 years, has no SE's! You will need an ECHO every 3 months to check your ejection fraction, but mine has been fine. If your EF goes down to under 50%, they will take you off for 6 weeks, then do another ECHO. It is great stuff.
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Denny - Thanks for the encouraging comments! I'm really only active on the Xeloda thread and it's inspiring reading everyones messages, especially yours. I look forward to many more years of positive messages!!
Grant.
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This is my 2nd day of the 7 day OFF..cycle 3. ( Xeloda 2000mg/day 7 0n/7 off.)
I feel normal. Kind of scary.
Guess I will find out if this chemo is shrinking mets in 2 weeks with liver MRI.
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SandiBeach57- Sounds wonderful. I tried to get my MO to agree to 7on7off- she wanted me to increase the dose 50% if I did that and I know I couldn't handle that. she was kind of horrified that I would consider that regimen.
I hope she will reconsider it after this next cycle. would be lovely to not depress my WBC so much and not have painful feet. Hope your MRI shows great results. I haven't had a PET yet- not sure when they will decide it is safe to do it.
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Thanks Nkb. This new dose seems very tolerable, no red burning feet, hands are ok, no "D", no nausea, no more heartburn..
But all this means nothing if the dose is not killing aggressive cancer in my liver.
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Does anyone have watery eyes and/or painful fingernails?
Both are miserable and nothing seems to help.
Any advice?
X
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Leee- watery eyes is a known side effect. Mine seems to be better, but, just finished my off weeks- sometimes they burn also- I use artificial tears if they burn,
My fingernails feel like the nails are too tight- trying to lubricate the cuticles more. Be careful cutting nails or messing with the cuticles - it's easy to get a paronychia.
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I am negative for the DPG6 enzyme.
I guess I am a wuss in clearing Xeloda from feet. Does that mean I am a fast metabolizer or slow?
From 3300 to 2000 mg/day in 3 cycles. Hope it works on liver mets.
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Leee -
Watery eyes! Oh, my goodness YES! I don't rub them, so they don't get itchy but the blurriness and weeping is beyond annoying. I've found doing a pressure squeeze with the eyelids relieves the build-up and blurriness. Direct breeze from a fan seems to make mine worse, so I wear my glasses more often. I haven't found any eye drops that really work, but I'm hunting.
No finger nail issues or pain yet but some slight dry skin - I'm on my second cycle - on my hands and some seriously dry skin on the sides of my feet, not the soles. Using using a pumice stone and 'Udderly Smooth' cream right now but waiting for some 40% Urea cream to be delivered and a few other goodies recommended here.
Hope this helps.
Be safe and be well.
- Kathleen
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hello everyone ,
I have a question has anyone experienced here high levels of calcium in blood , and elevated liver enzymes on their labs ? ( obviously while on Xeloda).
Thank you
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Holyhope, I'm sure that you and your oncs are all over this, but elevated calcium can be very dangerous. I was in the hospital for 5 days shortly before starting Xeloda with an initial 13.7 calcium level and hypercalcemia. Be careful!
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Hi Joyner,
Thank you for writing back yes it’s actually for my mom she is taking xeloda and Tucatinib , and yesterday they did lab at MO office and her calcium was 13.8 , today I checked with the nurse and it’s in the 12’s , May I ask how long it took you to recover and what symptoms did you have ? Also I’m worried she might have bone mets now because of this could that be a possibility too ? Im very worrie
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I'm going to PM you.
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Leee, the area under my nailbed is puffy. Looks strrange, but no pain.
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Sandy the area under my nail beds is funky too. Hard to describe. It's a hard lumpy white substance. (don't think it's nail fungus) Also, you can't get it out! No matter how much I clean under my nails it doesn't go away. Also, looking at my nails head on, you have the nail bed, than the white of the the grown nail. Well on every nail I have a strip of red (noticable) between those two areas. A new version of a French manicure? No pain at all.
I'm very very lucky that after 9mos, I have no sign of HFS. Just fatigue and funky nails. Zelodex hasn't shrink anything but has stopped all progression. I'll take it!
HUGS
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Snooky, I would alert your MO about your nails in case it needs to addressed sooner rather than later that might cause you to take a Xeloda break.
Can you take a picture and send it to your MO?
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I have the white gunk too.
I went to a podiatrist a couple of years ago when I first had a red and swollen big toe. She told me to put Betadine on it, and it cleared up in a few days. Now I just do that every time my toes get sore and they get better....even the time that I had puss under my big toenail.
I was soaking my feet in Epsom salt and she told me to stop doing that since it makes the feet too dry. I also use Bacitracin and a bandaid when I get split toe-pits.
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Hello All,
Despite liver mets, bone and some lung mets being stable, Liz has had some progression in her lungs and some lymph nodes. Her onc is moving her from Xeloda to bicalutamide. I won't miss seeing people's post because I'll still be following everyone here and keeping you all in my prayers.
Grant.
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Sorry Grant. But it looks like bicalutamide is for prostate CA? Is this a clinical trial?
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Grant, I'm sorry that Liz has to make a change. That's always unnerving. Wishing Liz..and you...all the best. I'm glad that you'll stick with us on the string, though.
To all, I found what appears to be a good metastatic BC medical update site. You have to subscribe, but the first two updates have had very interesting data/articles.
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Interesting...I just saw this on MedPage Today:
A review of evidence suggests that a "good level" of vitamin D can help reduce the risk of cancer but does not offer any benefits for cancer treatment. (University of Eastern Finland, Seminars in Cancer Biology)
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JoynerL, can you resend the journal link..for some reason it didn't work.
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