Xeloda and TNBC
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iz1999,
Mention the study in Japan regarding Xeloda. For 'high risk' survivors this study is very promising. Even though my treatment is complete I am grateful my Clinic is giving me the option of taking Xeloda, a chemo pill, that can nearly cut your risk in half.
Carboplatin is something I fought for post-surgery. I had even asked for it after I dumped my old onc for the new clinic because it's part of their TNBC/BRCA+ patients but my post-chemo MRI showed my lymph nodes were clear and my breast seemed clear too. Nope! I went from possibly being PCH to RCB-III. Anyway, I think Carboplatin elimated whatever may have lingered. Still, if there's something that can further reduce my risk will take it.
By the way, can someone please provide a link to the Japan Xeloda study? My smartphone is a difficult means of searching.
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Anna, to answer your questions upthread - I haven't heard anything about waiting a year for reconstruction. Most people I know have had it done much sooner than that. I can tell you that I am so ready to get these expanders out. Just a few more months.
As far as the side effects, I handled the effects of AC and Taxol really well so I wasn't worried too much about Xeloda. In my case, the Xeloda hit me like a ton of bricks, which I wasn't expecting. I just finished my last round on Wednesday, and I'm still fighting the diarrhea and sore feet. That should be all cleared up in the next few days. The one difference is that my energy level wasn't really affected like it was on the other chemo. Just annoying aches and pains. It was worth it though if it prevents a reoccurrence.
My MO gave me the go ahead to get my port out, so I have that scheduled for next Monday. Yay for progress!
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Hello Everyone,
2016, has been quite a year! I was diagnosed with TN on 1/28/16. I have a great team of doctors here in GA, so I hadn't been on any of the discussions boards til recently and found this great one!.... I began Xeloda today, with 3
pills this morning and will take 2 more this evening (500 mg each). 14 days on/7 days off. I went to the gym and worked out for an hour so my energy is good! I did start to have a little nausea afterwards.
I had ALOT of nausea with neo adjuvant chemo which I began back in February with Adrimycin and Cytoxan, then after 8 rounds did 12 of Taxol. The tumor was 3.4 cm they had estimated that it shrank to 1.4 cm by the time I had double mastectomy surgery in August and tram flap at the same time..... My PS did an amazing job!!.....After, surgery they found actually it was just tumor bed and they only found small micro pieces that were so tiny they couldn't measure them! Only had 2 lymph nodes removed..... But, the Atlanta tumor board still thought I should do radiation just completed 28 rounds 2 weeks ago. And, since I had the tiny cells after surgery it still wasn't a total PCR so doc started me on X today.
Anybody, have any tips that I should know starting off? I've heard side effects vary but aren't as severe. But, I'm like ughhh the nausea is starting already!.......But, yetI've been so blessed along this journey, although I never expected to be here. I was completely healthy before this. I've been praying and praisIng my way through. I know this journey is for God's glory and he has greater work for me to do. I appreciate all info, from you wonderful survivors
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Hi Everyone.
I am really glad I found this thread. I am a 34 year old female and was diagnosed in February of this year with Stage 3 IDC. One tumor HER2+ and the other bigger one triple negative. I did the whole 4- AC/-12 Taxol thing, Herceptin/Perjeta, double mastectomy, axillary lymph node removal, I just finished whole breast radiation, and now I am about to start a 6 month regimen of Xeloda. Anyway, I am glad I an not the only one and I will be sure to share my own experience with Xeloda on this thread as well. Best of luck to all of you and Happy Holidays.
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Hi Kee_Kee and Paisleyskies!!
I have completed 1 round of Xeloda. I will start round 2 tomorrow morning. I am on 14 day on and 7 day off schedule taking 2000 mg in the morning and 2000 mg at night. Round 1 was pretty easy. Just light headed in the evening. Nothing compared to AC-Taxol that I went through. I had blood work yesterday for the first time since starting so I will be interested to see how that looks as the other chemo and radiation really did a number on me. I feel pretty good "chemo wise" considering everything so I can't complain. (Now the fact that my chest and arm are in constant pain is a different issue but that's not the fault of Xeloda!) I am hoping to not get the hand and foot syndrome that others have talked about in this thread. I can see that my hands and feet are really '"dry" but I don't know if that is from the Xeloda or because the weather has changed and it is so cold outside?
Lillo57 and TNpotato...How are you making out? Hope all is well!
AnnaMO - did you find the link to the study you were looking for. I recall it being here in this thread somewhere. Let me know if you are still looking for it.
Kellychameleon - SO EXCITING to have put this part of treatment behind you and get the port out!!!!
Maryann
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Hi Hanley,
I am on my 3rd cycle (one week on, one week off), and so far, not too bad. Some stomach weirdness, and this round, feeling really tired and headachy. But all tolerable. I've overcome my initial doubts and am glad that I chose to do this. Hope I can get through the whole course. Happy to see that you are doing well!
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Congrats on finishing the Xeloda, Kelly! And Hello to fellow survivors/warriors!
My pills arrived last week. It'll be 2 weeks on and one week off, 2000mg (4 pills) twice a day. Our family has travel plans so I'll start Xeloda on Dec. 26. As with every new treatment I get incredibly nervous and sometimes my anxiety acts up. (I had to take a break from the internet. I was scaring the crap out of myself.).
To prepare for treatment I'll drink lots of water, get Pepto Bismo, regularly put lotion on my hands and feet, and hope the side effects aren't too bad.
From what many of you stated you had a lot of chemo. My first onc had me do 4 dosedense A/C and 4 of Taxol. I had problems with his office - billing, communication, referrals, and mistakes with documentation- so I switched to a clinic where everyone doctor is under one roof. Their cancer protocol was different and I wished I had started there, but after first onc I went straight to surgery with new Clinic. I've gone flat. Not getting new boobies. Maybe i'll change my mind or not. At least now the forms are perky! LOL. I do miss having cleavage. I really had nice cleavage. Le sigh.
Anyway, at the new place I got carboplatin post-surgery and 15 days of radiation. Then, my new onc offered Xeloda and how could I pass?
Oh! I'm also buying Biotene so I don't get sores in my mout. I used it with A/C and had no sores. The pharmacist said a salt water mouthwash would work too. She advised Aveno or Eucerin for feet. I'll probably use Vanicream since it'/ worked great with radiation and other drying chemos. For nausea I'll use ginger pills. Hopefully it will be somewhat smooth sailing. My onc says the most common side effects he sees from his patients with this pill is diarrhea.
As for finding the Japan study, I had to stop searching the internet for my sanity. I'll return when I start Xeloda. Now, I'm off to finish Christmas shopping for the kiddos. :
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Hi Hanley,
Thanks so much for your response, it gives me some piece of mind before I start Xeloda next week. I hope the following continue to go pretty easily for you. I have a 2 year od and I work full time so I am just hoping this doesn't affect me too much.
I am so sorry about the lymphedema, I am having some mild lymphedema too, I'm doing physical therapy and just started wearing my fitted sleeve and gauntlet and I think it is really helping. Thanks again for the info!
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Thank you, Hanley for the response
I'm sorry to hear about your Lympdhema. Hopefully, it will start to dissipate......This first week has gone pretty well. I got a new nausea med so that helping a lot. They also warned me of diarrhea but I actually think conspitation is going to be an issue just like it was on AC-T
. But, I've already started drinking Miralax in my water, sigh. Also, I read someone on here say Hand Foot Syndrome is a good sign of the pill working.- Got quite the question about sex: Do you need to have protection or are others using protection while on X? What about during Oral sex?...... My doctor told me to use condoms up to 48 hours after AC-T, but said nothing when giving me info on X?
As you ladies can probably tell from my questions chemo hasn't affected my Libido at all!
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Hi Kee Kee,
From what I have been told I need to use protection but only to protect from pregnancy; not because of the risk of passing the chemo toxicityto my husband (like on the AC). I hope this helps and am glad to hear your libido hasn't ben effected by the chemo!
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Thank you, Paisleyskies yes my doctors also told me to use condoms on the AC-T, but they haven't said much as far as sex on X
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My doctors have me on 2 weeks on and 1 week off. I started December 26, 2016 and finished the first two weeks without any problems. Today my blood lab results are normal. The pharmacist said diarrhea, defined five or more bowel movements beyond the norm, could occur at week three. Immodium was recommended if this occurred.
I've been taking Xelodo after a meal and drinking water. No problems with swelling, hands or feet, nausea, diarrhea, or chemo brain/fog. I've felt the need to sneak in a couple naps. Yet the labs showed I'm not anemic, which had been a problem with A/C (major fatigue at day 2 & 3 post chemo).
Onc says people may experience Xeloda differently. Age may make a difference as the docs have seen younger people tolerate it better. If diarrhea acts up and Imodium doesn't work there are prescriptions that can help. I've been gargling with Biotene but doc says salt water is better to balance things in your mouth. Xeloda effects ph balance (I think that's what she said) and Biotene is for dry mouth, which is good for A/C.
And Kee Kee...yay for having a libido! Prozac killed my libido. Had anxiety issues and depression post-BC diagnosis, so my libido took a nosedive before chemo. Hopefully, when Xeloda is done and I get off the Prozac my libido will come back. (crosses fingers)
Hanley - I hope you're feeling better!
Paisleyskies - How are you doing? It looks as though we started treatment at the same time. I hope you are well!
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AnnaMO, I am really happy to hear that your first 2 weeks went well and thank you for checking in. I was actually super surprised that I had such a tough time with this stuff. During my first cycle, I had very bad diarrhea (6+ times a day), an insane headache, dizziness, and got very dehydrated. It got so bad that my MO told me not to take the last day's dose and I got 2 liters of fluids when I went in for my Herceptin infusion (I had 1 triple negative tumor and 1 HER2+ tumor, Yay me!). After all of my side effects and seeing my blood work (everything out of range) my MO decided to lower my dose to 3000 mg a day. She said everyone's body is different in how it metabolizes the stuff and mine just didn't do too well. I am now on day 7 of the new dose and I think it did the trick, thankfully. I hope your second cycle is going well. Hugs and please keep in touch.
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hey Paisley!
I started round two on Wednesday. There was a pattern. Day 1 of pills (2000mg a day) gives me fatigue. I couldn't keep my eyes open around 4pm. A nap did the trick. Now all is back to normal. When I started Dec. 26 I attributed the fatigue to late night Holiday events.
By the way, you have a response via PM. I'll keeping checking in after each follow-up appointment. Feel free to PM anytime! =
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2nd round of Xeloda completed! I've felt more fatigue yet my blood panel show no anemia: my hemoglobin was 11.8 (12 is normal).
Main problem: my feet! 6 days in and two of my toes started feeling raw. Two days later they had blisters. Feet became tender so doc recd a specific type of lotion. It helped but feet got more tender and redder. I hobbled along and got kids to school. (They didn't notice my ginger walk.) Doc upped the ante and prescribed a steroid cream and I have to take two weeks off or wait until my feet heal before restarting Xeloda. Then doc want me to start a new schedule; one week of on and one week off. (Dosage remains the same - 2,000 twice a day/4,000 mg total.) Steroid cream is helping!
My alkaline phosphatase was high (127). I made the mistake of doing an internet search and worried. BUT my blood panels from Taxol went as high as 169 for alkaline phos. Phew! Now, I can sleep!
Fantastastic Beasts movie quote: "Worrying means you suffer twice...."
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hi ladies, first day of Xeloda for me today.
I had a very big tumor and some smaller ones:( I was er+ 25% from my biopsy that turned to TN on my surgery path report after neo chemo. I didn't achieve pcr, so my mo put me on six cycles of xeloda and Navelbine, I started Navelbine yesterday, it's IV infusion that will be on day 1 and day 8 each cycle. Xeloda started today 3000mg, 2weeks on one week off. I'll do 2 cycles then start radiation and after radiation I will continue continue the remaining 4 cycles.
Thank you all for the adviceson how to deal with the side effects of Xeloda. I hope it will be a tolerable chemo for all of us.
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Hi All!
I had a skin occurrence after my lumpectomy and AC. Taxol cleared it up, but we decided to do 8 cycles of Xeloda. I took it for about 3 weeks straight before starting radiation. I am two weeks into radiation now and starting what we are calling cycle 2. Looks like I'll be taking this until July. Uggh. I only took 2000mg during my first cycle and we are moving to 3000mg this time. I had few effects last round, some cumulative had tingling and heartburn in the last week. We will see how this next round goes. Glad to find some compadres!
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I'm curious - how often do you all get blood work done while taking Xeloda? With one arm off limits after surgery and the veins in the other arm not liking all the pokes, I'm anxious about getting lots more blood work. Thanks! And thinking of all you getting through it
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Hi Supr,
I only do blood work when I see my oncologist - once a month. If my counts are low, that might change. I think low counts are not super common with Xeloda - less that 10%.
Annie
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Thanks, AnnieTater! I hope all you ladies have a wonderful weekend
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Hi All! Wow this is an informative site!!! I appreciate all of the info that everyone has shared throughout the many posts! Today is my first day of Xeloda. I am taking 3000 a day for 8 cycles. I had a 5.7 cm tumor half on chest wall and half in my breast. Neoadjuvant chemo made the tumor "slide" off the chest wall and into the breast completely but it was 6.1cm at surgery.😟 (Double mastectomy/no recon) Clear nodes and margins but I'm not happy that it grew during chemo. Had 33 radiations and during that time found the Create-X study and took it to my onc. He agreed that I should take it and then I drug my feet a little cause I don't want more chemo. However I have an AWESOME family and they succeeded in pushing me to start. So I have spent the weekend getting my mind strong and positive in lieu of today. I just ate 2 eggs and a piece of toast and then with a small prayer🙏🏻, took the first 3 pills with a full glass of water. I'm so thankful to have this forum to build new friendships and share advice!!! I don't feel so alone when I read this site!😃
**Hi Paisleyskies! (Met her on a different forum last week when I was preparing for today....very welcoming and sweet!!!!)
-So today back down the chemo rabbit hole for 6 more months🐰! I am convincing myself that each pill is a vitamin that although may have side effects each one will conquer anything left and make me strong again!!!💪🏻
GOOD LUCK🍀 To ALL today on our Xeloda journey!
- HarleyDream (my two horses names squished together🐴)
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What a great attitude, HarleyDream! You go, girl!
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Thank you Suprsurvivr!!! 5 full days complete and so far NO side effects!!🤞
- HarleyDrea
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Hi All! I made it through the first 14 days with no SEs!!!! I'm in the off week and I feel fine. Crazy as it sounds....makes me wonder if it's working? I don't want to feel bad, but so far nothing! Wouldn't it be nice if it stays like this all the way through! Only time will tell.....cycle 2 starts Monday.
Hope everyone is well and prayers to all who are getting the blizzard up north right now!!!! This is when I'm really super happy being from the south😂!
-HarleyDream🐴
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That's awesome, HarleyDream! I'm so glad it's been SE free for you! 🎉
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Hi everyone! So sorry I haven't been posting - the Xeloda kinda knocked me flat and then I caught a severe chest cold (more on that at end of post)! BUT it was all worth it!
Had my follow-up mam in Feb and all was clear, and even more important, had my PET scan on Wednesday to check those nodes behind my sternum: no evidence of cancer.
Woohoo! My cancer treatment team and I had decided to throw the kitchen sink at the cancer and it worked! Of course, with the triple neg, I'm playing the 'wait and see roulette' game for the next few years, but honestly, for a time there, I never even thought I'd even make it to NED.knitnpurl - So happy you finished Xeloda too!
Tulips - Post treatment has been wonderful (so far!). I noticed today how stressed my body has been. It's like my neck and shoulder muscles finally said "ok, you can relax now!" after a year! Crazy...
MaryAnn/hanley50 - I hope you can start your reconstruction earlier, but I know each cancer team seems different with when they want you to move forward with scans/recon/etc. I hope you can find coping mechanisms like I did to help the time pass sooner. (Like, I aimed for fav movies being released- 'just a few more weeks til X hits the theater, then I'm so much closer...')
So for those on Xeloda/starting Xeloda here's my experience with it - it sucked! lol I kinda breezed thru AC/T, even my radiation combined with weekly Cisplatin was tiring but doable. But Xeloda totally wiped me out. I was very close to being hospitalized during my second round due to EXTREME diarrhea/dehydration. My first round went well, but by the end of my second I was utterly exhausted, and then two days into the rest period the diarrhea started and I thought it wouldn't stop (literally was living in the bathroom for 3 days), even while maxing out on Immodium. They gave me a very helpful drug for the diarrhea - Lomotil - which finally stopped the diarrhea and my oncologist and I lower the dose for both the third and fourth Xeloda rounds. (AND I started the third round 'late' as my onc insisted I had to go for at least three days with normal BM's to ensure I wasn't starting the next round compromised.) I was able to complete the fourth round end of Feb, with only severe fatigue as my 'parting gift'. Then my kids gave me their chest cold and I was flat on my back for another week! Whaddya got to do to get a break sometimes! :P
It just amazes me, having read so many stories from everyone, we really are all unique in our responses. There are many, many people that breeze thru Xeloda, and some like me that have a tougher time. But it was worth it!
And as far as prep, I'd say the following were helpful to me: Oatmeal and Urea based lotions for HFS (which was more of an annoyance for me compared to the big 'D'), Immodium/Lomotil (esp for people who have experienced diarrhea with other chemo), stay hydrated, and nap whenever you can to restore your energy.
Hugs to all you wonderful women!
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Happy Spring, Everyone! April showers bring May flowers, right? We've certainly had a lot of rain where I live, so I'm looking forward to all the flowers.
I went to a breast cancer oncologist to get a second opinion for ongoing treatment and to see if she had any available clinical trials. While I missed out on a brand new immunotherapy trial, there is a vaccine trial available that I'm going to read up on. She did say I could start taking Xeloda. I would take the Xeloda from May to early Sept, then wait 60 days before possibly starting the clinical trial.
I'll be contacting my regular oncologist next week, and I'll let y'all now what happens. I hope you all are well, and I'd love to hear how your treatments are going. Take care! ✨🙏🏻
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Hi everyone,
I just popped by to see how everyone's doing, and it's good to see you all moving forward! TNpotato, I'm so sorry that you suffered so much, but yes, isn't it GREAT to be done?! So happy for you. Good luck to everyone--SuprSurvivor I hope you feel good about the plan you develop. HarleyDream, Annie, Mom4Ever, AnnaMo, PaisleySkies, Hanley50, and anyone else I missed--I hope your treatment is going ok--some of you may even be done by now! Yes, it is so hard to predict how people will handle Xeloda....there really is a huge range of responses, but I am also grateful that we have it as an option.
I just passed 2 years since diagnosis, and I can attest that it continues to get easier. I think about it fairly infrequently (or maybe it's more accurate to say that I worry about it fairly infrequently). My hair is not back to its full length, but it is down to my shoulders at the bottom so it's getting there. I feel 100% normal health-wise. Had a clean mammogram in March and currently don't have any weird aches & pains. I don't look at these boards as often, which I think is healthy for me (I try to balance that with wanting to come on occasionally to help support new people as I was enormously grateful to those who answered my questions in the beginning).
I had looked into a trial (SuprSurvivor, it is probably similar to what you were looking at). The one I was interested in was a phase 2b trial sponsored by NCI for an immunotherapy vaccine. It's for women with TNBC who had residual cancer after neoadjuvant chemo, and they have to be 60-365 days post their final treatment. I had my last Xeloda on August 31st 2016. The trial was set to open in March, but just got delayed to September. Ha ha ha ha....I become ineligible on 8/31/17. But I'm really ok with this. I have a strong feeling that I'm done with this cancer and I feel that the extra Xeloda was my bonus treatment and hopefully that's enough! It feels good to just be living life and putting some distance between me and all of that treatment.
Oops, I did not mean to write a book. Mostly I meant to stop in and cheerlead for those of you still using Xeloda and wish you well!!!
Tulips
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Tulips - thank you so much for checking in and giving us your update! I pray I can do the same a year from now. I want to let you know how much I appreciate the Xeloda info you gave on this site. It's helped me a lot!
Last Friday, my reg onco said ok to Xeloda before the trial. He's going to start me 2,000/day (I'm 5 7, 150lb) on the 14/7 schedule. I'll be able to get 6 cycles in. I'm of the mind that this is "bonus" chemo, and I'm good with the dosage. There is info on the "All About Xeloda" thread that some treatment centers are routinely giving 2,000/day regardless of body weight to mTNB. I travel some with work, so I'm hoping to keep a healthy chemo/life balance. I exercise a lot (mostly cardiovascular machines/weights), and I really hope to keep that up to. I've got my lotions ready and will dig out my zofran and immodium, just in case! I'll be starting May 5 or 6. I'll let you know how it goes.
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