All about Xeloda
Comments
-
Dear leftfoot,
Did you mean that you took your antinausea drugs each day whether you were nauseated or not? I have Zofran but hadn't thought about how (or when) to take it. I have no specific directions from my onc, so I guess it's up to me. I can deal with that, thanks to all of you for your great advice.
BTW, I've been on taxol twice before and my onc thought that I should try X for a couple of reasons, but one being it's easier to tolerate. We'll see, but I'm hopeful that will turn out correct. Taxol still works for me, so I can always do that again.
0 -
Winning,
Tomorrow is day 14 of first tx. Goldie's info a few hours ago sealed the deal for me. I'm not taking the meds tomorrow. My lips feel like I overdosed on collagen injections and my tongue feels like ive been licking sandpaper.
My dose has been 1500 x 2 daily. Once I started getting nausea, it became very predictable, right after lunch so I preempted with nausea meds. When I didn't , I regretted it.
Mary
0 -
Winning, I would definitely choose X over Taxol and do Taxol if the X doesn't work, and since you have already done it twice, you would know what to expect. Back in 2008 I did Taxol, Adrymiacin and Cytoxin. I managed ok, but still tough.
Megc, my rash is doing great. I have been taking a Benedryl every night before bed. I might try every other night. And it say to take every 4-6 hours, of course that is for the allergies. I take 2 pills in the morning and 3 at night. My onc said if I wanted to I could do 2 and 2 on my second week, but I have not done that. Want to do as much as I can tolerate, but like I said, might skip day 14 and on occasion I take a 2 week break instead of 1.
I have not had any nausea, diarrhea (except on my first cycle with 8 pills). Fatigue is there, I can sleep almost 12 hours, crazy!
0 -
Winningsofar- It has been so long since my first rounds of Xeloda(yay) that I have forgotten the exact directions. I believe I took it preemptively prior to taking my Xeloda. I would take my Zofran and then I took my Xeloda with food. I would read back in the threads to see what others are doing.
Anyone new to Xeloda have the directions their oncologists gave them for medicating for nausea?
0 -
Since switching to a one week on/one week off schedule (1500mgs 2x/day), my hands and feet are almost normal! Also using homemade Uridine cream and use Cetaphyl cleanser when I wash my hands. I have my next scan on the 21st but my tumor markers have been looking good (see below)! Points below the red line are in the "normal" range. You can see the "flash" reaction when I started Xeloda in October 2014. Continued to go down despite my dosage reduction. Hope this bodes well for my scan!
0 -
SusaninSF, I watch your posts with tiger-bright eyes. My oncologist has changed his mind and now tells me I can take Xeloda on a 7/7 schedule if I choose.
Since hand/foot syndrome is a never ending problem for me I may just make the change to the 7 days On, 7 days Off schedule. I haven't yet made the change and I'm still trying to keep to the 14/7 schedule.
I am interested to see how you're doing on 7/7. Tumor markers don't work for me. I have to have scans to find out the status of my cancer.
I'm hoping you get great news at your upcoming scan! Crossing my Xeloda damaged fingers for you!
Kessala
0 -
Thanks for your kind words Kessala!
Lots of research about lower dosages of Xeloda being just as effective. Using biochemical modeling, one study showed that, theoretically, the optimal dosing is 7/7. They modeled out that after 7 days the dosages added toxicity without any added benefit. However, the daily dose for that study was high, 4,000mgs/day. I'm hoping that, by lowering my dosage, I can take Xeloda for longer. We'll see!
Hugs, Susan
0 -
Interesting, Susan, thanks. Had my visit with the NP yesterday and they suggest that I lower my dose from 3000 to 2500 this cycle. I'm interested in the 7/7 routine, too, but for now I'll try this. Once I see if the drug is effective, I'll think about tweaking it some more. My scan is set for October 15. I'm really eager to see what's going on.
0 -
Info please. Was on 3000 Xeloda daily for 13 days. Sunday was my last meds. I have had more and worse se since stopping the meds. Thrush came out of nowhere, double over cramps, the big D, no food will stay down for more than a few hrs, can be OK for 1/2 hr or so and then the next wave of yuck hits. Anyone else having this much fun during the third week?
I see the docs tomorrow but for some things I have more faith in you all. I know this stuff is very much individual.....maybe I have a misery loves company syndrome or it's not just me being a baby.
Mary
0 -
Dear Megc,
I have nothing to offer but my sympathy. I assume you called your onc. They need to get you help asap!
0 -
Megc,initially my side effects started anytime from day 12 onwards. quite often they will start once I have completed the 14 days on Xeloda(for example day 16). I had to have my dose lowered..... this helped a bit, but after a few months and some research and learning that the 7 day on/off cycle is just as effective as 14/7 cycle with less side effects, I discussed this with my oncologist who refused to change me to the 7/7 cycle and said I can either stay on the 21 day cycle or even go on to 28 day cycle (14 days on/14 days off). The reason for this is that I have a blood test every time before I start my next cycle and because all my treatment is free here in Australia and because of protocols etc, I decided to stay on the 21 day cycle because the side effects usually do not start until day 12 (every cycle is different and the last cycle, the big D started on day 4 lol)..... I have Xeloda for 11 days and then I have 10 days off.
I have been on Xeloda successfully for 3 years next month...(since November 27 2012). Make sure you do not get dehydrated, and try to stay away from milk products as that encourages the big D.
0 -
Mary- my D problem started on my week off, too. It kept on for a couple of days until I took Immodium. That.stopped it in its tracts. Now I'm on. 2500 daily dose. I hope it makes a difference.
0 -
hello Ladies. I'll be joining you next week on Xeloda. My ONC did inform me that the SEs were cumulative and its common for them to appear or get worse during your off week. Mandymoo, it seems three years is actually on the longer side, so bravo on that! I guess a lot of people go off after about two years because the SEs become unbearable. All hearsay, but seems consistent with what I've read here. Anyway, I'll pop back in after I start.
0 -
Yes, I agree that a lot of people decide to come off X after a year or so due to the side effects. I just took 3 weeks off after about a year, and I have taken a couple of weeks break every few months when I decide that I need a break. I found that after the first year when I changed my cycle to 11/10 that my side effects have reduced and I am lucky that the side effects have not continued to increase. I just got my CT results back today and no evidence anymore in my brain, liver or lungs and my bone mets are still stable. doing the happy dance. Good luck Stefajoy, I hope that X is successful for you and I still think that it is the gentler chemotherapy drug, compared to the others.
0 -
That's awesome news mandymoo!!! I'll do the happy dance with you from across the Pacific!!!
Hugs, Susan
0 -
Thank you Susan.... I try to read the posts on this thread, but dont always have the time. I do want to give the ladies hope and encouragement though. I just burst out in tears of relief yesterday when I read the report. I know my luck will run out, but at the moment I am very happy and in disbelief as well.
hugs and healing strength to everyone. xxxxx
0 -
Can Xeloda cause spotting?
I'm on it since July this year. It seems to be working - my markers are down. Yesterday I noticed vaginal bleeding(spotting). I'm having Zoladex three years now and it is not possible to be my period. I'll visit my gynecologist but can't stop thinking it is something bad.
0 -
hello Kiss,
I'm premenopausal and when I switched to Xeloda my doctor told me that after the hormone drugs left my body that I may get my period again and that I even have to be careful about getting pregnant. So it is possible but def call doctor if your concerned.
0 -
Thank you Rseman,
I'm on Zoladex which excludes this to be period. Last year on my PAP test everything was ok and this year have not visited my gynecologist yet. It's time to make this visit :-)
0 -
I just want to report that after my first full week on X, I'm having no side effects that I can detect. So far, so good. I don't expect this to last long, but I'll enjoy it while I can.
I was warned by the nurse not to tub bathe in hot water or wash dishes in hot water. (Really, take a cold bath and wash dishes in cold water?). What do you gals think of that? If you're not experiencing HFS, what can it hurt? It's not like hot water causes HFS, does it?
0 -
I don't know- I was never told that, but now that I have HFS, I wouldn't wasn't to bathe in hot. Pleasantly warm is ok with me. I hope you continue to have no side effects, winning
0 -
Is anyone on this thread pre-memopausal and taking Xeloda? When I was on my hormone therapy, I was receiving Lupron shots to put me into menopause. Now that I am on Xeloda, we have stopped the Lupron shots and I will go back to pre-menopause. I was just wondering if those of you who are pre-menopause did the same thing or did your doctor keep you in menopause?
Also, I was wondering if Xeloda is the reason my urine is always dark yellow now. I am training for NYC marathon and I always monitored my water intake my making sure my urine was clear but no matter how much water I am drinking, I can't seem to get it to clear. I started to think it was the Xeloda.
Thanks so much for any information,
Renee
0 -
Rseman,I'm pre-menopausal and am on Zoladex. I'm on Zoladex since 2013 year. It has the same purpose as Lupron - to keeps me post-menopausal.. My onc never told me to stop Zoladex while on Xeloda :-/
and yes, Xeloda can cause this change in the urine's color.
0 -
Xeloda sisters,
I found a moisturizer that really does help with HFS! It's better than the Uddery Smooth cream the onc's office gave, as well as Bag Balm, and it's inexpensive. And no parabens.
Made with coconut oil, shea butter and vitamin E. Smells sweet ( may a bit too much so, but oh well) and really does heal the cracked skin on my feet and hands. $5.99 for a large 8oz tub.I had to pass it along because I'm so pleased to have finally found something that works and is easy to deal with. Cheers!
0 -
Mandymoo, Xeloda is certainly a good drug for you!
Sandilee, did you forget something in your last post? 😉😀
Ok, so PET in Thursday. I start xeloda immediately after. Keep ya posted.
0 -
Stefajoy, good luck on Xeloda, hope it works and that you can manage the side effects.
I am also scheduled to start Xeloda (on Wed) and am still questioning whether it's the right decision for me at this late stage (just read a study on this site regarding quality and duration of life on chemo vs no chemo at my stage of the game). I survived taxol/adraicycin/cystosin back in 2008 and have done 5 years of tamoxifen and 3 rounds of radiation and did all the hormonals (not working for me) and am still exhausted from the Ibrance/letrozole (6 rounds, highest dose). Finished radiation to my upper spine last week and thought I was improving, but then I sneezed which triggered a very sharp pain in my lower spine radiating to my hip area which won't go away - It seems to be the same area I had radiated over a year ago (weirdly, pain was again triggered by a sneeze), so I know they can't radiate again if it's the same spot which it seems to be (too bad since the radiation worked great to eliminate the pain for over a year), but now the pain is really effecting me - can't lift or bend, or easily get from sitting to standing, so I feel useless. Not sure I'm up for Xeloda.
Sandilee, what is the name of the cream you recommended - where can it be purchased?
I have been too tired to thoroughly read lately, but I see when skimming that it is a very informative thread, so thank you, everyone, for all of the useful info!
0 -
3Holly, it's all so mentally and physically exhausting. I did see a few women here, if you read a few pages back, that had multiple mets in multiple places that were totally quashed by Xeloda. It's got to be worth a shot. And if the mets go away, hopefully so will the pain. Your QOL will be so much better without pain.
When is the last time you had a scan? That will tell you a lot.
0 -
Stefajoy, Thank you for those words of encouragement. You are probably right, if the pain could be relieved, I might be less exhausted, so maybe the Xeloda is worth a try if I can tolerate the SE's. My scans were back in August which showed new mets to the liver as well as the lungs and bone.
I hope that Xeloda, treats you well, best of luck!
0 -
Sorry everyone. I did forget to post the name of the cream! Can I credit chemo brain? Xeloda brain?
It's Trader Joe's Coconut Body Butter. It was in my local TJs in the section with personal products. I plan to buy several and give them out to friends with ordinary dry skin, as it makes my flaky legs look smooth again, too.
For those coming off Ibrance, I have to say that my energy has returned with Xeloda. My blood work is normal now, and I can feel it in my stamina. Yes, I have the HFS thing, but it really isn't so bad now that I have reduced my dose to 2500 and found the coconut butter. I feel I could stay with this drug for a long time with little impact on QoL. Definitely worth a try, imo. I'm on my fourth cycle, and ready for a scan this Thursday to see if it's working. I'm optimistic, mainly because I feel so much better.
0 -
Sandilee,it is great to hear you are doing so well on Xeloda. I am optimistic.
I also have a scan this Thursday, so I'll be thinking about you having a scan while I'm having a scan.
0
