Xeloda and TNBC
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Thanks, ladies! I really do feel happy to be done, and you'll all be here soon. And Kelly, I'm so glad you are having fun! I think that's so important! Keep up the good work, everyone!
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TulipsAndDaffodils - Sooo happy for you! I hope cancer remains firmly in the rearview mirror for you and that this begins a wonderful new chapter in your life!
kellychameleon - Ohhh that sounds nice about now! Just starting my rads/chemo, It'll be awhile I think til I can get a weekend trip in!
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Well, I apparently overdid it. On Wednesday evening I had a pretty high fever, and my doctor made me go to the hospital. I tested positive for strep.
Yesterday was awful, but I'm feeling a lot better today. I was supposed to have my last carbo infusion today, but we're having to put that off until next week. She's keeping me on the Xeloda though.I have 3 more trips coming up (scheduled before I knew I was going to have to do additional chemo). I'm trying not to push myself too hard, but I want to live life too.
TNPotato, I hope your treatment is going smoothly!
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kellychameleon - So far, so good! Got 4/33 rads done and first Cisplatin outta the way. Hope I feel this good in future weeks!
I'm sorry to hear about the strep!
I hope you're feeling better today! >>I'm trying not to push myself too hard, but I want to live life too.
Exactly! It's not like the world stops spinning!
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Have to share this. So it turns out my "ingrown" toe nails, weren't ingrown at all. It's just that my feet had become swollen and tender from the Xeloda, so my nails were now "too hard" for my skin! So icing and a little neosporin makes that feel a lot better.
And my hands and feets have been so dry and tender from all of this. Last night I decided to "double goop" my feet. It is an off week of medication, but everything was still so dry. So I first put on a layer of Eucerin from the tub to really moisturize. Then to seal in the moisture I put on a layer of Bag Balm. To keep it from getting all over my sheets, just a thin pair of cotton socks. When I woke up this morning, my feet felt so great! I hope some people are able to get some help out of this.
Take care all!
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Well, my journey with xeloda is over and done with before I even completed the 1st cycle. Around day 12, I started having terrible tummy cramps and diarrhea. The next day I ended up in ER and stayed in hospital for over a month. Turns out I'm allergic to xeloda. I've lost over 30 lbs and still feel lousy, but I will heal with time. I hope nobody ever has the same reaction that I did, it was awfully painful.
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Jacklin - Oh no!
I hope you're feeling better and starting to heal now! A MONTH in the hospital?! WOW... that is no fun at all. ((HUGS))0 -
Hi all
I know you're all in the US but I just wondered if you'd heard of anyone in the UK being given for Xelode for not getting a PCR to chemo for TNBC?
Thanks
Beccy
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Thanks TNpotato, yes a month is a long time, didn't realize how sick I was until I got home. I thought I'd been there about a week, they kept me very drugged so I wouldn't feel the pain. I feel like I've lost a whole bunch of my memory; maybe that's better not to remember everything that happened.
Hi Bex1980, not everyone here's an America, I'm a proud Canadian. If you check "calling all TNBC in the UK" (or something very close to that) in the TNBC forum, you'll read all about women in the UK who have taken xeloda.
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Sorry Jacklin I only skimmed over the thread quickly!
Thanks for the tip, I'll have a look.
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Oh no Jacklin! That's so awful. I'm glad you're better and hopefully you continue to be.
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Thanks knitnpurl, thankfully I do see progress albeit slow. I need to give my body time to heal, and I will.
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dear all,
My mom is starting xeloda soon and I wanted to ask what is the right sequence for radiation and xeloda? First radiation and then xeloda or the opposite? In our case it is to be first xeloda and then radiation.
Also the mo was a bit hesitant to give xeloda as he thinks her cancer is more like luminal b but we insisted.
Any answers would be highly
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Hi Piterpan,
I am not completely sure there is a "right" sequence. I assume you are talking about Xeloda for patients who are not metastatic, but had residual cancer left over at surgery time after neoadjuvant chemo (like the other women on this thread).
Most people in these cases are basing this treatment plan on the CREATE-X trial. You can google that and read about what they did. I believe in that trial, after surgery, women had radiation and then did the Xeloda afterwards (but double-check that!). This is what I did. However, there have also been a few women posting on here and on the TNBC Foundation website, who had the Xeloda concurrent with the radiation. I never read the studies, but I think they understood that that approach could even increase the effectiveness (although I believe they suffered very harsh effects of the radiation because of the combination). I do not remember coming across anyone who did surgery then Xeloda and then the radiation, but to a certain extent this whole approach is new and somewhat experimental, so that may be a perfectly logical approach. I believe my own oncologist would not have been happy with that because he didn't have HUGE faith in the Xeloda for me based just on the one CREATE-X trial, but the radiation is tried & true. So he would have not wanted to postpone the tried & true radiation, but was ok with tacking on the Xeloda after I had all the important parts of treatment done.
Good luck! Just keep asking questions and I'm sure you'll come up with a sound plan!
Tulips
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I'm not starting radiation until a month after finishing Xeloda (on my second to last cycle now!) My MO said that I could do them concurrently but that it would have a negative effect on my reconstruction. For me personally, the order was chemo, surgery (bilateral mastectomy), carbo/xeloda, radiation, reconstruction.
This is the first time I've logged in in a couple months - it's been a crazy busy fall. I hope everyone is doing well!
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Hi Kelly,
Me, too! It has been a busy fall and I've purposely tried to stay off the boards and just live life! It's working well; I've had a great fall (I finished all treatment on 8/31/16). So happy for you that you are almost done with Xeloda, congratulations!
I forgot you were doing it in this order. I can totally see the logic of that approach, especially with reconstruction/mastectomy, etc. So I guess it sounds like there have been some women who did radiation followed by X, some do X followed by radiation, and some do concurrent ;-). No consensus on best approach. My fingers are crossed that all 3 approaches are equally successful for everyone!!!
Tulips
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Hi all. I've just started xeloda based on the create-x study. I'm being treated at MSK, and their protocol for tn is 6 months of treatment, one week on and one week off for a total of 13 cycles. I'm a little nervous about side effects. I'm more nervous about this than any of my other treatments, probably because with the others I had no choice, as opposed to this being elective. Are the side effects that bad? I'm making myself a little crazy
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Hi Lillo,
I'm sorry you have to do more treatment, but I do think we are lucky there's this option for us. As far as side effects go, if you scan back through this thread, you'll see a real range in how people tolerated it. On average, it is supposed to be much less intense vs. typical chemo, and for myself I found that to be true. There are some people who have a terrible allergic reaction, but I think you'd know about that pretty quickly after starting, so you are probably okay there. I am assuming you had some residual cancer after your lumpectomy? Hopefully X will take care of any possibly circulating cancer cells! The other thing about side effects is that since X is sort of "bonus" treatment (new option), if for some reason you end up with more severe side effects, you can always consider stopping then. So I wouldn't put too much anxiety into predicting side effects, just try to wait and see. You may end up with almost nothing of concern! I know 26 weeks sounds like a long time, but it will fly by. Good luck!!!
Tulips
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Tulips, thanks for the encouragement. My residual was tiny, 0.6mm, but it was in the node. My RCB is 1.365, which makes me the highest 1 or the lowest 2 on the index. I believe that Sloan is offering X to all tns with residual, but surprisingly, I haven't seen much buzz about it on bco, except for this thread. How many months in total were you on xeloda? So far, so good. I will keep plugging along
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hello all and thank u tulips for the answer. Hopefully the sequence doesn't affect that much the result. In our case there is also a thought of having the radiation on parallel with xeloda,which I don't know what side effects can cause. The time will show..
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Well looks like I'll be starting Xeloda again on Dec 1st! I finished my radiation/chemo on Oct 20th, and they want to wait about a month to let me heal before the next round of treatment. The idea is 4 rounds, 2 weeks on, 1 week off. This (hopefully) will be the last of my treatments, and it's an odd feeling. I am looking forward to being done, but at the same time, there is a 'safety' feeling while in treatment, seeing the docs often. I should be finishing shortly before I was diagnosed this past year. What a year... :^/
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Hello all!
I'm happy to report that I have finished Xeloda! Made it through 7 rounds, almost at full dosage for all of them. Just to recap, my doctor started me on the two weeks on/one week off schedule and made an automatic 20% reduction in the dosage, so I was taking 4 pills in the morning and 4 at night (500 mg). In the second round, the hand-foot syndrome, got pretty bad, so I then changed the schedule to one week on/one week off, but kept the dosage the same. Hand and foot syndrome and some fatigue were pretty much my only side effects. I did do acupuncture throughout, so I think that really helped my tolerance. When I had three rounds left, I reduced the dosage to 3 pills in the morning and 3 at night, as the HFS was getting more annoying and painful since it seemed like the effects were cumulative. My last week was supposed to be the week after Thanksgiving, but thanks to going on a business trip with my husband (two weeks in Hawaii!!!!!) my doctor said to cut out the last round so that I'd have less medicine in my system by the time I go on the trip. Then during my off week, right at the very end, I actually got an infection! I got fever and chills, and it basically felt like the stomach flu. It all happened on election night, so I thought I actually made myself sick because of Trump! Imagine my relief when I found out I was really sick and didn't do it to myself! LOL! I did seven days of antibiotics and felt much better after the second dose. I did one last round, reduced the dose further to 2 and 2.
I'm celebrating with a glass (ok probably half a bottle!) of prosecco, getting ready for Thanksgiving, and then going to Hawaii. Even better, my mother is coming up to take care of my kids, so it will just be me and my husband.
Keeping you guys in my thoughts! You're all super tough and can get through this! Lots of love to you!
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Dear Knitnpurl……WAHOOOOOO! Congratulations on being finished with almost a year and a half of treatments!!! And Hawaii sounds like a wonderful way to celebrate. Have a blast and enjoy living!
TNPotato, Congrats on finishing up radiation! The Xeloda time will fly by. I hear what you are saying about finishing, and I had read so many things by cancer survivors that said they found it difficult to move into the post-treatment time….so I was worried that I would feel that way. You don't know how you'll feel until you get there, but I am happy to report that for me, post-treatment has been AWESOME. Yes, I may occasionally have little nagging thoughts, but I also have giant swaths of time where I basically forget all about cancer. I don't even relate to all of this "adjusting to my new normal" stuff. I mostly feel like things are back to normal, my old normal. I'm a little more conscious about my food choices (but was always somewhat careful, so this isn't drastic), but I'm not overly anxious. God forbid this does come back, but in the meantime, it is possible to live life vibrantly and with joy. Good luck!
Tulips
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Hello Lillo57 and TNpotato...I am joining you both. I started Xeloda on 11/23/2016. I will be doing 8 rounds total of 4000 mg per day (four 500 mg in the AM and four 500mg in the PM) on a 14 day on 7 day off schedule.
The past 5 days have been pretty uneventful. The only thing I noticed so far is that after the evening dose I feel lightheaded. Not sure what that's about yet. I think I need to give it more time to figure it out.
TNpotato - I've read through this thread and see that you had a few rounds of Xeloda, then stopped, let your counts come up, had your surgery, gave your body a chance to recover a bit, and are now starting back up for your final rounds. I am kind of freaking out at this point. I was suppose to be on a clinical trial that should have started a month ago and was only suppose to be for 6 rounds. The trial fell through due to timing issues so my MO put me on Xeloda off trial and wants me to do 8 rounds. Since I just started, I will not be done with Xeloda until May 2017 which is messing with my reconstruction date of 04/03/2017 which is when I am scheduled to have this S T U P I D TE taken out and have DIEP. I don't know if I have it in me to wait that long. I was already upset that I had to wait 6 months from the date I finished radiation and now to have to wait even longer is really upsetting. If I finish in May, I know they are going to tell me I have to wait at least another month from ending Xeloda which would take me to the end of June 2017. Feels like this will never end! Maybe I can see if I can break this up and have surgery in the middle of Xeloda? IDK
Anyway, Lillo57, hope you are doing well and TNpotato hope all goes well when you restart this week.
To everyone that has contributed to this thread, Thank You all for sharing your experiences. I have read every post and value all of the information shared.
Maryann
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Good luck Hanley! I'm on the same dose as you, just 7 on and 7 off. Let's throw everything we can at this thing!!
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Well, I'm waiting for my insurance company to approve Xeloda. After surgery in May my doctor and I discussed Xeloda vs. Carboplatin due to my RCB 3.29. The eight doctors in the meeting unanonmously voted for Carbo since I didnt get it during my AC-T infusions and studies show Carbo is very helpful for TN/BRCA+. Plus, the clinic believes Carboplatin may be what contributes to their above average survival rate. (I had started at a different clinic and switched to a new one.)
Theorically, Carboplatin is supposed to reduce my risk by more than half. So, 4 infusions of Carbo and 15 days of radiation I was dancing with NED. On October 28th, my family came to the clinic to celebrate my last day of rads. My little girl was so happy to help me ring the bell. Three weeks later, my onc discusses the Japan study again and my high risk burden. It was a downer, but I'm choosing to get back on the roller coaster. I'm 45 and want to have the best chances possible to live a looooooooooooooong life.
Lillo57 - "I'm a little nervous about side effects. I'm more nervous about this than any of my other treatments, probably because with the others I had no choice, as opposed to this being elective."
Yup. You're not alone!
TulipsandDaffodils - Congratulations! You did it! I'm so happy for you.
Good luck to all taking Xeloda or those walking their path! You're not alone! Each day is a gift!
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Anna, I did both Carboplatin and Xeloda (well, technically still on Xeloda, but only for 5 more days!!) My side effects of Xeloda sucked pretty badly in the beginning, but after some tweaking, the last few cycles haven't been so bad. I started taking Lomotil more frequently to counter the diarrhea and Prevacid twice a day for heartburn, and my doctor lowered my dosage to 5 pills a day (I take 2 in the morning and 3 in the evening). The foot pain really sucks for about 4 days out of the cycle, but I can live with it. Of course now that I'm nearing the end, my mindset is definitely more positive!
I haven't started radiation yet - will start the very beginning of January. Then on to reconstruction (DIEP), and then hopefully DONE. Such a long, hard process.
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Kelly,
Wow! Only 5 more days! Would you rate the side effects of Xeloda compared to the infusions? My dr said I handle chemo so well that the pill will be mild in comparison. Eh. Yet I had been told AC was worse than Taxol and I felt the opposite. (Neuropathy scared the crap out of me so I only had 3 1/2 infusions rather than 4.) The dr said Xeloda can be adjusted if side effects become a problem.
Don't you have to wait a year after surgery (or is it treatment) to start reconstruction? Just asking. I had both breasts removed and may not choose to do reconstruction. (I took pictures the night before surgery in case I want reconstruction and tattoed areola. O.O)
The forms are working well but Phoenix AZ gets so flippin' hot in the summer. Man, those forms can make one feel toasty! lol
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hello Anna and Kelly, I was diagnosed march 2016 IDC-TN stage 3, had A/C and Taxol, lumpectomy lymph node dissection and now radiation, I had never heard of xeloda and carboplatin I will sure ask my oncologist on my next visit, is this a new treatment
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