Xeloda Group - Jan/Feb 2018 (Early Stage)
Comments
-
Hi Frog, I had about three weeks off between the end of radiation and starting Xeloda. Everyone is different, but I just wanted to give you some encouragement. For me Xeloda is SO much better than the TC or AC chemo I did previously - I can actually live a fairly normal life on Xeloda.
I'm on cycle five now, 14 days on, 7 days off. I started out at 3000mg/day, but on cycle two it was lowered to 2500mg/day. I am at a lower dose than some here, but my MO said we all metabolize Xeloda differently, and she seemed to think that was the right dose for me. I do trust her judgement.
I do have mild fatigue sometimes, and there are days where I just have to pace myself. I've also had a little hand/foot syndrome, but it's been mild and very manageable. And my hair is growing back! Anyway, I was nervous about Xeloda too, because I had such a hard time with TC and AC, but Xeloda is much better for me, and I'm really glad I gave it a try.
Best wishes to you, and please keep us posted on how you're doing.
0 -
Hi Frog, I started Xeloda about three weeks after finishing radiation.
I also just wanted to give you some encouragement - for me, Xeloda has gone well so far.
I'm on cycle five now, 14 days on, 7 days off. I started out at 3000mg/day, but on cycle two it was lowered to 2500mg/day. I am at a lower dose than some here, but my MO said we all metabolize Xeloda differently, and she seemed to think that was the right dose for me. I do trust her judgement.
Everyone is different of course, but I'm glad I gave Xeloda a try. I have not had many side effects, and I can live a very normal life on it. And my hair is growing back!
Anyway, please keep us posted on how you're doing - hopefully you'll have a better time on Xeloda than you did on the other chemos.
0 -
Thank you ladies for the encouraging words. I have one more week of radiation left. I see MO in another 2 weeks. We will find out about dates and dosage at that point I believe.
0 -
Flynn: "I'm walking the line between keeping my life going & respecting how strong these drugs are." Exactly!!!
I've posted here before, but I wanted to update my status re: Madam Xeloda. My two weeks at 4000/day were terrible in terms of SE. I then went to two weeks on 3000/day - 14 on, 7 off. That was also too harsh. I've been doing 3000/day but 7 on, 7 off in stead of 14 on and 7 off, since September 13. I will only get 74 days of Xeloda (equals 6 3-week cycles) before my oncologist will stop it to make me eligible for the Keytruda trial. This is a trial for those of us who have not metastasized, to see if it will keep us TNBC-free longer . . . or forever. If I am not randomized into the medical arm (get Keytruda), I will be in the 3 month "watchful waiting" group and will probably finish Xeloda . . . if I can stand going back. The protocol calls for 8 3-week cycles, so I'd try to get those four additional weeks in a total of 8 weeks for me.
We CAN do this! Best of luck to you, Frog and Button!
0 -
Hi Paula, I'm glad you're hanging in there! Thanks for the encouragement! I'm still doing fine on 2500mg/day, 14 days on, 7 days off. I'm currently on my off week between cycle 5 and 6.
Toward the end of cycle 5 I cut my toe and got a small infection, so I have to take antibiotics during my whole off week. Bummer. I'll see the dermatologist and my MO on soon, so fingers crossed that everything looks okay to start Xeloda again, although it's possible I'll have to take an extra week off. I'm just hoping the infection clears up all the way and it doesn't derail my chemo momentum.
Best wishes to everyone! :-)
0 -
How's everyone doing? I'm finishing cycle six of Xeloda tomorrow - just in time for Thanksgiving!
After this I'll have two more cycles to go, for a total of eight - and then I will hopefully be done with chemo.
0 -
Hi Buttons...
Good to hear from you and congratulations on completing round 6!
I am doing better and better. My MO said today I can return to work full time.
Very Happy Thanksgiving everyone!
We can do this!0 -
Glad to hear you're feeling better, and returning to work - that's great news!
0 -
Hi everyone.
buttonsmachine ~ well done for six rounds of Xeloda. It hasn't been easy for you. You can do this.
Chelsea, great news that you return to work full time.
I am feeling better and better after finishing Xeloda. This morning I realized that I forgot to take letrozole yesterday, no wonder my right arm felt so much better!
0 -
Glad you're feeling better too, Beauz! How's the Letrozole been treating you overall?
It's nice to hear from both of you, Chelsea and Beauz, thanks for checking in. I'm hopeful that I'll be feeling better once Xeloda is done too - one foot in front of the other.
0 -
Hi buttonsmachine, thanks for asking. Overall I feel pretty good on letrozole so far. A few minor things I noticed, eg, joint pains on my thumbs and big toes ,which I had before chemo , get worse, occasional mild hot flashes, my sweat seems to occur over my head mainly. The muscles on my right shoulder got tighter after I started letrozole, which restrict my arm movement a bit. All these SEs haven't affect my daily living and work much. Oh, those little lines on my shoulders during Xeloda have gone. Best wishes.
0 -
Hi,
Just to let you know I did 3 cycles, #1 2500mg cycle of xeloda, 7 on 7 off. #2 Dose lowered to 2,000mg 7 off 7 on, did #3 also 2,000mg results seen on CT 19/11 were no tumors. I t totaled my feet lost 4 toe nails, blistering, peeling. I told my onc. Took 3 extra week was running a temp. Back on it, but now only 1,000mg 7 on and 7 off. Hope I get the same rsults. Liver needs to be cleaned. All othe mets are gone I was on Navaliebine 55 mg now now to 4omg. had temps for 3 weeks. METS to mediastium ,lungs and T11. I take Zomta every 4 weeks bones ae scleatized. Liver enzymes are still high also TM high.
Raven
0 -
Hi Raven, good results on your recent CT scan. Hope Xeloda works for you for many more furture scans. I hope your other conditions will improve as well. Best wishes for your treatments.
0 -
Gils on Xeloda,
Were you tired when you live tumors were breaking up. How long did this last . I was spiking low grade temps like100.9 every night. The is alot of debree left after the tumour has broken up. I am now on 1000mg/wk 7 on 7 off. ans one else on just a low does??
All Zeloda stories helpful
Raven
0 -
Hi Raven, I am sorry that you are facing complex issues from treatments for stage IV BC. I don't want you feel that your posts are ignored in this thread. But as the thread is set for early stages, most of us here don't know anything in order to respond issues raised in your posts. I am sorry that I can't help you much, but I do wish you feel better soon.
0 -
Raven, you may have already seen this, but there is an active thread called "All About Xeloda" where people might be able to answer your questions better. I used to lurk there sometimes before I found this thread. Hugs and I hope you feel better soon.
https://community.breastcancer.org/forum/8/topics/772113?post_id=5317300
0 -
Hi Raven,
I join Buttons and Beauz sending you strength for the path. I was extremely tired on Xeloda. From what I understand it is a very effective drug, so I am expecting it to do its job in restoring your health. 💕0 -
Hello all, haven’t posted in a while but wanted to check-in to see how all were doing with Xeloda. I finished my regimen about 10 weeks ago and my hands and feet just recently cleared up and returned to normal—they were completely dark almost black and very dry. Oddly, they didn’t hurt.
Other than that, we think I handled Xeloda well physically. Blood work remained good throughout. I am awaiting the next instructions on this journey but happy to just take my Aromasin for now...and endure the minor joint pain that comes with it
Happy Holidays!
0 -
Thanks for checking in, Opt4Life - I'm glad your hands and feet are improving. I hope you continue to feel better and better as time goes on!
I'm right behind you - I'll be starting round 8 of Xeloda this week. I'm keeping my fingers crossed that everything goes as smoothly as possible for that last round! It's exciting to be close to the end.
Hope everyone is doing well.
0 -
Opti4life, congratulations on finishing xeloda. please keep us posted for the next instructions on this journey.
Buttonsmachine, wishing you a smooth last round of Xeloda!
Three months post Xeloda course, I can't feel any SEs of it. Only taking Letrozole now with some minor fingers , toes joint pain and tight muscles around right shoulder.
0 -
Well, I made it - I finished round eight of Xeloda!
It's so surreal. Strangely, I have mixed feelings about it: I'm excited at the idea of not being on chemo anymore, but I also feel a little nervous to lose the Xeloda "safety net" I've had for the past six months. I didn't really anticipate feeling that way - crazy, right? Overall though, I feel so, so, SO glad to have reached this milestone. It felt like such a long way to go to get to this point, and yet here I am.
I hope everyone else is doing well. Hugs and best wishes to all!
0 -
Buttons....Congratulations!!!
I too felt weird when it was “over”. In fact, I found myself feeling more overwhelmed than I had previously. It’s like with the discovery, then biopsies, then chemo, then surgeries, then PT, then radiation, then chemo, I had a charted course...with lots of time spent with my MO and othe healthy care providers. THEN....it’s like in a movie about space and an astronaut gets disconnect from the ship and starts to just drift out into space.0 -
Thanks for the reassurance, Chelsea! I find that I'm having many of the feelings you describe. I think I've been so busy getting through treatment that I haven't processed everything yet. It's been a crazy couple of years.
In a couple weeks I'll start Aromasin. That will be a new chapter too, but I'm hopeful that it will go smoothly.
0 -
hi buttonsmachine, congratulations!
Chelsea, nice to hear from you again.
We all face the uncertainty of the future after treatment. Right now my heart is broken for the passing of mamafeliece, who is a dearly loved 2017 BCO sister, to this dreadful disease.
0 -
Hi. Sorry to hear of her passing.
I appreciate that some of us are still posting on this topic even those whomay have finished Xeloda. It helps me to have y'all fighting alongside. Cancer Sucks.
0 -
Hello ladies, MO suggested to start Xeloda next week due to residual tumor. I'm already on lupron + letrozole. Worried about taking so many meds and it's impact on body. Still thinking to give it a shot to avoid recurrence. This is the only thread I found on Xeloda for early stage and finding the info very useful. Your experiences will surely help me. Any specific suggestions? Thanks in advance.
0 -
Hi BeingPositive,
Welcome to the journey with Xeloda. You can do this
This thread was enormously helpful to me, and you will see lots of good tips in the various posts.
In response to your post, here are my recommendations based upon my experience:
1. Use Eucerin lotion on your hands and feet all the time, even if you think you don’t need it.
2. Drink tons of water.
3. Respect the RX as the strong chemo it is even though it is in pill form. Specifically, notify your MO of any severe or weird side effects right away. Don’t try to tough it out. Your dosage may need to be lowered (this is very common), and it is better to find out before your symptoms become severe.
I am glad I stayed the course and truly believe it was the right choice for me.
💕0 -
Hi BeingPositive, Chelsea gives great advice. I'm about 2 months out from finishing Xeloda, and I'm feeling better. I'm glad I did Xeloda - everyone is different, but for me it was by far the best chemo as far as quality of life goes. I hope it goes as well as possible for you!
0 -
Those of you that are ER/PR+, did you have to convince your MO to let you take Xeloda? I asked mine after my BMX pathology came back not quite pCR, and he said no more chemo, and Xeloda would only be given if I were TNBC. Kind of disappointed that I'm left with only radiation and hormone therapy as options. Every medical professional I've talked to says my MO is the best, and the guy they'd choose to see if ever they needed an oncologist, but it makes me wonder seeing people on this board with hormone receptive BC given Xeloda.
0 -
Fritzmylove, I can understand your concern. Are you able to get a second opinion before the window for chemo closes?
I'm not an expert at all, but I have seen people in your sort of situation get Xeloda. My situation was a little different - I got Xeloda because it was a local recurrence, and because the first line chemo drugs didn't work well on my cancer apparently.
I hope you find some answers, hopefully more people will chime in.
0
