Xeloda Group - Jan/Feb 2018 (Early Stage)
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I start round 2 of Xeloda tomorrow. My side effects so far were a little nausea starting on day 12 for a few days in late afternoon, nothing a Phenergan didn’t alivate. Diarrhea once on day 16. And some lower back, hip aches on week 2 until a few days into my off week.
Ewu, my MO is a pretty conservative guy. I didn’t get Taxol once a week like it seems most TN’s do because he felt it wasn’t proven. I got it DD every 3 weeks. And even he believes in Xeloda for TN’s with residual. I am ypT1b -N0M0 stage post surgery.
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Hi ladies, checking in during cycle 2 with Xeloda.
So far so good with only dry and darkening hands and feet. And a couple black toenails. But no significant tiredness or other aches. No diarrhea but I am one of those irregular gals so now I’m just regular (TMI right?)
My MO would still like to add Gemzar to the regimen but understands my need for caution in compounding these drugs. Plus Gemzar would require a port.
Palbociclib and Fasolodex also seem to be in my future. Anyone else getting similar recommendations from their MO?
Peace and blessings everyone.
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Has anyone tried CBD oil for HFS? Thinking of trying it... My skin is not peeling but a lot of pain in my feet and hands.
R
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rdeesides, I too have very dry hands and feet. I haven't tried CBD oil but use an organic coconut oil and a shea butter mix by Coconut Essentials. It's a little pricey at $30 on Amazon but a little goes a long way.
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hi rseesides,
I have used Eucerin from the beginning and it has worked very well.
After researching CBD oil for other side effects I decided it wasn’t right for me, so I cannot answer your question directly.0 -
Hi all! I finished my radiation therapy on 1st of June. My nipple oozed for several days towards the end of rads treatments. My skin mostly healed two weeks after my last radiation. I will resume my Xeloda tomorrow for 4 more rounds.
I bought a humidifier recently. I turn it on most time in the living area. It definitely improved my crackly dry hands and feet.
rdeesides, how are you doing? Hope you feel better.
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beauz - thanks for asking about me. I was hospitalized, I think due to X side effects. Horrible GI issues, diarrhea, vomiting and stomach pain. I have a history of colitis, so there was some question whether the colitis had been triggered or if I was truly having side effects. A colonoscopy did not reveal any active colitis so it seems it was probably the X that did it to me. However, they took a bunch of biopsies and we will see... I was on 4300 mg/day and I'm 145 pounds and 5' 6" so I think that was a high dose. I am off the X for two weeks now and will start back next week. Will see my doctor next Monday. I know he will lower my dose, but I hope he lowers it a LOT. I'm scared to start again. I know most people don't have these kind of issues, so I also know that it is doable if I can just get the right dosage.
Cancer sucks.
R
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Hi, ladies,
I'm on rad 9/28 and wondered how long you went between radiation and Xeloda? I will see my MO in a few weeks, but I'm just curious.
I am told I will start with 4000, and I'm 5'10", 175 pounds, so some of you seem to have proportionally higher doses than I do. I'll be on it for 8 sets of two-weeks-on, one-week-off. Then my MO will try to get me into her clinical trial for Keytruda.
I know I'm still early in radiation, but I slather up 3 x day and so far am fine.
Wishing everyone energy and strength!
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rdeesides - So sorry for your hospitalization! My GERD went explosive on me after 5 months of chemo, including some stomach/intestine issues. But I do hope you are recovering. TNBC is . . . a challenge. Strength and love, Paula
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Hi PaulaAtlantaGA,
I started X 23 days after radiation.0 -
Hi rdeesides, sorry about you hospital stay. But glad for your okay results of colonoscopy . My MO uses the formula to decide the dose. But based on his clinical experience, he capped the dose of Xeloda at 4000mg per day.
Hi Paula, I resume my X two weeks after radiation. I went to see MO one week after radiation and he told me to wait for another week for skin issues to settle. My radiation oncologist also wanted me to have two to three weeks break in between rads and oral chemo.
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Thanks for the kind thoughts Paula and beauz.
Paula you are right, TNBC is a challenge. I'm surprised my stomach issues didn't pop up with earlier chemo, but I have been eating so well and taking probiotics.... Oh well. I am now feeling better day by day.
My hands are now peeling A LOT but don't hurt. Just kind of feel like a snake. ;-)
R
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Hi ladies, it's been quiet here. How is everyone doing with Xeloda?
I am entering my 4th cycle I think and so far other than extremely dark hands and feet, I'm doing okay. I started back carb cycling to take off some of these post-DIEP surgery pounds (laying around is never good for anyone) and that has helped with any fatigue that I might have been feeling.
I still do my 4 or 5 day a week elliptical workouts so that has helped with my energy levels too. I do notice that if I don't eat promptly when I feel hungry that I get headaches. Never used to get headaches so that was disconcerting but eating my 3 square meals resolves the problem.
Hope you all are having a great summer.
Peace and blessings
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Hi Opt4Life and everyone else,
I am halfway though round seven of eight. Still on 3000 mg per day. All is well and I really look forward to not being on Xeloda anymore!
I have fatigue and joint pain and still use loads of lotion in hands and feet. Mornings are best.
We can do this
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Chelsea, you are in the homestretch then. And, it’s really great that your side affects though noticeable haven’t kept you from comtinuing Xeloda.
Its hard to tell whether my joint pain is from Aromasin or Xeloda, but it certainly is no worse than when I was taking Aromasin alone.
We can indeed do this!
Keep moving forward
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opt4life and Chelsea, great to hear that you are going along with Xeloda. I am on my round 6 and on 3000mg per day. The skin peeling on hands and feet is not as bad as before, but my finger tips are sensitive. Sometimes I feel light headed.
Best wishes to you all.
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I hope everyone is doing well. Congrats Beauz, Opt4life, and Chelsea on being so far into your regimens!
The original plan for me was to take a lower dose of Xeloda with radiation, but that only lasted a couple weeks and then my skin really started to break down. The doctors took me off Xeloda for my remaining radiation treatments. It was worth a try, but I had a feeling that doing both simultaneously would be too much for my body. Isn't it funny how we sometimes just know these things?
Anyway, now I've had a couple weeks to heal from radiation, and I'm set to embark on roughly six months of Xeloda. I'll be taking 1500mg twice daily, two weeks on one week off. I'm hoping that it goes smoothly.
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Hi Xeloda Group!
I'm going to be starting Xeloda on Friday, and would love to get some idea of what to expect. I was diagnosed with a recurrence in January that was primarily in my liver with some small suspicious nodules in my lungs. I did Gemzar/Carboplatin for a while, then my PET showed progression around my ovaries. I moved to Ibrance, and then my PET showed progression to my omentum and periotneal space. So, after a biopsy to rule out ovarian cancer, I am set to start Xeloda next. Apparently, my ER sensitivity has plummeted. I'll be starting on 1500 twice a day for two weeks on and one week off. I have read your posts, and it looks like I can definitely expect the hand and foot issues. My abdomen mets makes it hard to eat very much at a time. How much food do you normally have to take these pills with? I want to make sure I have enough to help with absorption, but not enough to cause any stomach distress. Any foods to totally avoid? My MO says I'll do this for 3 cycles and then do another PET to see if it's working. Fingers crossed that third time's the charm!!!!
Take care,
Missy
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Missy, so sorry to hear about your recurrence. There is Xeloda thread in Stage IV forum where you could get more information and support you need. I did have some slight diarrhoea and abdomenal cramps while on higher dose. Make sure you drink plenty water. Good luck. Hug!
Buttonsmachine, indeed a worthwhile try with Xeloda and radiation! My finger tips are sensitive. I want to sew a few loose buttons but holding a needle hurts. Just have to wait. Wishing you a smooth journey.
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Friends,
I start Xeloda tomorrow. QUESTION: How important did you find, or were you told, about the 12 hours between daily doses?
I'm Stage III TNBC, so it's really important I try to do all 24 weeks. My MO is starting me at 4000.
Thank you!
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Hi Paula, welcome! I hope it goes smoothly for you. I think you ask a great question - I was going to ask my MO the same thing. I can say from my own experience that I think I feel a little better when I take the medicine as close to 12 hours apart as possible. I take it sometime during the 11 o'clock hour, morning and night, because that works for me. When I first started I would sometimes do 10 hours apart or 14 hours apart, but I think I had more side effects that way.
I find it really helps to take it after a decent meal, and with plenty of water. Just my experience, but hopefully others will chime in soon too!
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Hi PaulaAtlantaGA,
I did ask my MO that question, as i was not liking having to eat first thing in the morning and particularly at night since I found myself going to bed pretty early and sleeping a lot.
So, he said not to worry too much about the 12 hours and take the pm dose 9 or 10 hours later, that it would be ok. And that has worked fine for me. I eat breakfast and take 3000 mg between 7 and 9 AM and take 3000 mg between 6 and 8 PM. It has worked well.
And I agree and want to emphasize what Buttonsmachine and others have posted:
Drink LOTS of water.
Enjoy the journey. We can do this!0 -
Thanks, buttonsmachine and chelsea5!
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Hi Paula, I eat my breakfast and then take 1500mg around 730am and take 1500mg around 6pm. I didn't ask my MO the question. I just worked out my own timing. But I did ask the pharmacist why it has to be taken morning and evening. They said so to maintain even chemical level of Xeloda in the body. Best wishes.
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Thank you again.
Is anyone willing to post a set-by-set (8 sets of 3 weeks for many of us) list of side effects they've experienced? I realize we are all different, and I don't want to "borrow trouble." Thank you.
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My MO has stopped my Xeloda altogether this weekend until we can talk or meet on Monday. I have had intense back pain, hand/foot needles and red swelling, and needed 1/2 pill Percocet twice/daily to get me through. And I finished all of 5 days of my first week.
Have you stopped and started again at a lower dose? I was on 4000/day.
Have you been switched to a similar drug to Xeloda, if there is one?
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PaulaAtlanta,
Yes. I started on 5000mg and ended up in the hospital. All was fine after being treated. MO reduced dose to 4000mg and i was still having extreme side effects. By round three I was on 3000mg a FB the side effects have been manageable ever since.
MO assured me that taking a lower dose does not negatively impact the effectiveness of the medication.
I have one more week to go on round eight. I hope your MO can get the dosage right for you to reduce the discomfort.0 -
PaulaAtlanta, to my relief , your MO stopped your Xeloda . As I mentioned here before, 4000mg per day of Xeloda is the maximum dose my MO would prescribe to his patients based on his clinical experience. I had a chat with my nurse on my recent appointment with MO, she said high dose of Xeloda can be fatal in some cases. I hope you get better soon. I am aware of one TNBC lady got into
the active arm of the pembrolizumab/Keytruda immunotherapy trial recently after a course of Xeloda.
Chelsea, I am sorry to hear about your hospital trip. I am glad you are doing better. Yay, you are on round8!
I started Xeloda on 3300mg per day. I had bad skin peeling on my palm and finger tips in round1, stomach cramps in round2. I have been on 3000mg per day since round3 and I am on round7. So far, the second half of my Xeloda course has been easier than the first half. The main SE is sensitive finger tips.
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Thanks, beauz and Chelsea5. It's good to think my MO may continue this at a lower dose.
beauz - my MO is participating in that Keytruda trial. It's for TNBC that has not metastasized (isn't IV). I will be going into that trial when I finish Xeloda. It's why she asked me to keep my port. Of course, I have only a 50/50 chance of actually getting Keytruda, but I think being hopeful is part of this process, yes?
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Beauz, I also have sore/red fingertips. I've been off for a few days and my fingers are still sore. Did you find anything that helps with that? I'm upping my lotion and wearing gloves more often, but it doesn't totally fix the problem.
PaulaAtlanta, I'm glad you're off for now. Maybe they'll lower your dose, or maybe they'll give you something else altogether. Keep us posted! Everyone responds differently to these drugs. For example, I had a very bad reaction to Taxotere, so that's off limits for me now.
Chelsea5, I'm glad you're doing better on the lower dose.
I am at 3000mg daily, and so far that has been tolerable, but not without side effects. My MO said Xeloda can be difficult to dose, because everyone metabolizes the drug differently. I have Gilbert's syndrome which means my liver doesn't metabolize drugs quickly. That might be partly why I started out at 3000mg rather than a higher dose.
Wishing everyone the best of luck!
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