All about Xeloda
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Denny123, 2000mg 2x/day + 300mg Tukysa 2x/day is what I was told today. Thank you for the welcome!
Joyner, Woot, Woot! on the great bone report! You go girl.
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So happy for you Joyner. Good news is always welcomed.
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👋🏻 Hello, everyone! I’m not new here but I’ve been following the conversations and learning so much. I don’t know what I could add to the conversation except great news, Joyner!
I’m in the middle of my third cycle, 3,000 per day 14/7. I didn’t notice any serious side effects before but this cycle I’ve had more fatigue, my feet are starting to burn a little at night and GI issues, mostly a lot of gas. I feel like I’m burping all day. Is it normal for side effects to accumulate or do they show up right away? I still have issues from immunotherapy-induced hypothyroid but they aren’t the same side effects. That was a job just getting the thyroid under some kind of control before starting Xeloda. I thought about cutting back to 2500 but I have a scan coming up and want to wait until that’s over before reducing. I’m so nervous about this not working - I haven’t had the best luck with any treatment so far and feel like I’m running out of options too soon.
Thanks for any input - I feel a little on my own out here!
Libby
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Libby, you're surely not alone...we're all out here pulling for you! I personally found the SE on Xeloda to be cumulative, but they seem to reach a point, and for the most, part stay there for me. I was reduced twice to get to a manageable level. 3000/da to 2500/da to finally 2000/da, all at 7/7. Even at 2000/da, 7/7, I still have significant HNF, but it's acceptable. Cost-reward!
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Joyner---So happy for you. Praise God
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Libby-my GERD got worse so I took Gaviscon for awhile. And now I do sleep on 2 pillows. My SE's come and go. But mostly my hands and feet. I have been on 2,000 a day at 7/7 and it is keeping me NED so far, for 2 1/2 years.
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Joyner, oh my yes, wonderful scan news for you and should make for a nice summer! Happy for you!
Welcome Bliss! I hope Madame X treats you well!
Ok, I began Xeloda March 16, one week on, one week off, so about three and a half months in.
Wandering, it seems we started at similar times, and I’m getting some mild side effects, too.
Last week while on the meds I experienced tingling on the bottoms of my feet for the first time towards the end of the week. After being off the meds a few days this week, it’s gone. Has anyone used the cold therapy socks which have the gel pad inserts you can freeze? Am wondering if they work.
Also, does anyone use a foot rasp file for the dry skin? My feet aren’t too bad with the aquaphor and gel heels, but I wondered if I could use a pumice or the foot file for smoother skin.
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Divine, I used the cold therapy socks when my feet had burning sensation. I did not sleep in them, just used them while resting on the couch. It helped the pain.
The Aquaphor works for me. Haven't needed pumice, so can't advise you there. I did have to trim the peeling skin as my entire bottom of feet peeled away when on higher dose.
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Divine, I've used one of those foot pumices, and it was okay. Just don't be too vigorous. And if you are, it will just make your foot sore in that spot for a while, at least in my experience.
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Devine- I used a pumice a little also- early on and ice for the fiery burning -with lower dose and 14/14 schedule my feet are pretty good.
Lots of peeling after cycle 3 or 4 so not pumicing much. still cream though.
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hello joynerl
can I ask that your mets is tripple negative right now ??
and you give xgeva monthly ??
Your doctor check tumor marker or just scan ??
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Andish, I had a skin met on my forehead a bit over a year ago, and the biopsy (a very small piece of tissue) came back surprisingly identified as triple negative. I had always, for 30 years, been estrogen positive, 40-50% generally. When I met with my MO this week, after my stable PET scan and after 16 months of stability since triple negative diagnosis and since starting Xeloda, I told her that I thought that the biopsy was wrong and that I was not triple negative at all but rather still estrogen positive. She looked at my and smiled and said, "And I AGREE!".
So...that was likely to be a false identification of triple negative. I hope.
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Lynn..our properties can change. My chest node mets turned from Her2+++ to Her2-.
This happens often.
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This is my first week off my first two-week cycle...is it typical to still feel bad? I am a little worried my blood test tomorrow will not be good. The good news is there is no H&F symptoms.
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IntoLight---No HFS yeah. Yes, I normally feel lousy one day 1&2 of my week off. I assumed it was because body was hard at work detoxing. But I don't know that for a fact. I'm in my 9th month and still have no HFS. I wish the same for you
(if I knew how to turn off Bold, I would. lol)
May God shower you with blessings. (In my opinion Zeloda is easier than Ibrance was
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IntoLight, I had bloodwork done last Thursday and started my 2nd 2 week/1week off cycle on Friday. All my counts were back to normal, my wbc was back to 6.2 , neutrophils were backup to 3 and most importantly my liver enzymes started to drop.......I'm kind of hopeful with this drug
Also no hfs so far
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Intothelight- I didn't have HFS until cycle 3- it was cumulative. my dose was lowered to 1000 mg twice daily and it is much better.
I am now on 14on/14 off since my white count and therefore ANC is too low to just take one week off. My MO is very resistant to 7/7 schedule without upping the dose which I couldn't tolerate - so we will see if It is effective at 14/14. so far has been working- I worry about a low ANC with the corona virus around.
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into the light- I forgot to add to drink a bunch of water- I was feeling bad during my off week but, added more water and that
helped me.
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Thanks for your responses everyone.
NkB, I already drink lots of water as I know how beneficial it is. I am up a couple of times a night as it is!
Snooky, Ibrance was fairly easy for me and I was on 125mg for 4 years, so the fact Madame X is easier for you is one thing I wanted to hear!
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Into...typically you will feel worse on your week off. Now that I have been on X for 2 1/2 years, I can feel worse at any time. But I am only on 2,000 a day at 7/7, so I am not too bad.
Denise
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I received a Xeloda kit today in a box with cold packs, but I haven't read it needs refrigeration, so I thought that was odd. I was surprised the pharmacy also included a refill reminder magnet, sticky notes, a water bottle, a hot/cold pad, and a Koozie soft-sided lunch-type bag. Did any of you receive "goodies" with your first dose? I'm also quite worried now about taking this med after reading literature that came with it. Seems like lots of potential heart problems I don't want or need. I'm on 14/7, but won't actually start until July 16.
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Bliss, I didn’t receive any kit. Perhaps this is through your speciality pharmacy. The cold packs are because it is so hot right now. No refrigeration is required. Just monitor yourself closely. Just ended first cycle. Labs today are acceptable. Good luck.
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Bliss, I received the same pack..actually two, since I have Rx for 500mg and 150mg. I put the hot/cold packs in freezer and use on soles of feet as needed.
The 1st lunch tote I use to put my foot/hand special lotions, gloves and night socks. The second tote I use for OTC meds specific to Xeloda use, like Pepcid AC, Peptobismal, Tums, diarrhea meds, constipation meds. I am ready for anything..ha!!
I use two of my old Ibrance "28 day white plastic pill boxes" for my Xeloda pills. One for morning, the other for evening. No refrigeration needed.
Capecitabine (Xeloda) is packaged to withstand the extreme temperature variation when mailed.
I am in the middle of my 4th cycle (it is a 4 week cycle: 7 on/7 off) and currently 2150mg/day. If this cycle is tolerable, I will increase to 2300mg/day at cycle 5. I had a rough time with my original 3300mg/day (14on/7off) and was off the drug more than I was on. It did kill cancer as my scans improved and liver enzymes are now normal. Ca15.3 also decreasing. My MO wants to find the balance of drug efficacy and HF, other SEs tolerance.
Keep posting as it helps to support each other. Many of us are previous Ibrance users.
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Bliss-what dose are you on? I am only on 2,000 a day at 7/7 and the SE's are tolerable.
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I won't actually start until 7/16 with my next Herceptin infusion, but I will be on 4000/day, 14/7. I'm pretty worried about that dosing and expect a decrease, but I'm a big lady, so I think my MO wants to see first what I can tolerate. I will be monitoring myself closely because I'm also concerned about liver enzymes since the literature emphasizes potential liver problems and so far, my numbers are good. I did tolerate chemo infusions well albeit that was back in 2015 and I'm now 61.
Yep, I see the specialty pharmacy's logo all over the goodie bag and other contents; nice touch I think. That's a great idea about putting all my Xeloda meds and needs in the lunch bag to have at the ready all in one place!
Thanks IntoLight, SandiBeach and Denny for your support and good information.
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Bliss, I started at 3300mg/day. I am 125 lbs and 5'5".
My HF, diarrhea started around day 11-13 on first cycle. It was rough. I ended up in wheelchair as I couldn't walk due to foot inflammation.
Don't hesitate to call your MO if you get symptoms that could be grade 3. Grade 3 causes you to he off Xeloda until recovered.
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Bliss- I started at 2500 14/7 and on 3rd cycle I could barely walk- had burning feet that morphed into severe pain. I was decreased to 2000 per day.
At USC they use 2000mg per day regardless of weight. (a big research center - not where I go). my ANC still gets low so have switched to 2000mg per day 14/14. My TMs have plunged 90%.
I would be worried about 4000mg per day also.
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Bliss-my dosage was lowered at the first sign of red feet and hands. I have been on X for 2 1/2 years and am currently NED.
Considering that I have been on chemo for 18 1/2 years, it has a challenge with me. So far, so good. And I am about 30 pounds overweight.
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Thanks all for your dosing experiences and knowledge. Good to have to present to my MO. I will contact her at the first signs of HF. I was too brave and fearful during TCHP to turn down the T&C ending up with permanent neuropathy in my feet & hands. Accupuncture resolved some of it, but still pretty bad in my left foot especially at night. It's good to have an idea of when I might start experiencing SEs, too.
Wow, Denny, 18.5 yrs of chemo? You are a warrior. Congrats on NED!
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Thanks Bliss. I am very blessed. Going for my Herceptin today, and it is like my second home since I know everyone so well. I do think that I am the longest surviving Stage 4 patient there.
I started my chemo 2 months before this building opened up, so I am a lifer there.
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