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Xeloda and TNBC

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  • skiclaire
    skiclaire Member Posts: 3
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    I'm wondering if anyone takes Xelod after a PCR as a preventative measure, or is it only for those who have residual disease?

  • TNpotato
    TNpotato Member Posts: 57
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    Tulips - So glad to hear you're moving forward! :) I've got one last thing to get taken care of before this chapter ends - scheduled for an oophorectomy on May 9th. (Genetic tests showed me BRIP1 positive so it's a prophylactic surgery to prevent possible ovarian cancer down the road as I'm at a much higher statistical possibility for it. ) Will be glad to FINALLY move on from all this...

    SuprSurvivr - Hope all goes well! I think I've read more positive stories on here than negative so let's hope that's the way you go! :) (I only had bloodwork like once a month if that on Xeloda - and it was mainly once the big D kicked in - my onc wanted to make sure I wasn't protein deficient or having electrolytes outta whack.)

    SkiClaire - Not sure! I definitely did not have PCR after surgery due to those behind the sternum nodes.

    HarleyDream/Momy4Ever - Hope those final cycles went well! :)

    AnnieTater - Hey, fellow potato! :)) Hope your SE's are still mild and you finish in time to enjoy a beautiful summer! :)

    AnnaMO - Have you tried any oatmeal based lotions or Urea based lotions for the HFS? I found alternating them helped me get through the worst of the HFS towards the end. Totally know what you mean about the 'ginger walk'! Hope you're doing better!

    To any of you I missed further back in the thread - hope you are all doing well and that if you aren't replying that means you are so busy with 'normal life' that this place becomes a place you visit infrequently. I have to admit, that's what's starting to happen to me. Hugs to you all! May we all become NED and only come here to cheer each other on as we celebrate each new cancer-free anniversary!


  • maylilac
    maylilac Member Posts: 2
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    I'm new to this site-- like others I get too nervous when I google too much, but it is really helpful to hear about other treatments. I just found recently that I have a local recurrence in an internal mammary node. Meeting with a thoracic surgeon tomorrow and planning to have it removed since nothing else is positive on PET. I will be talking to my oncologist later this week, but am feeling like I need a 2nd opinion since she is not thinking of any chemo at this point. But I want to be as aggressive as possible (4 and 12 yr olds plus amazing hubby). I will definitely ask about Carbo and Xeloda (had 4 dose-dense A/C and T, double mastectomy and radiation last year).

  • moderators
    moderators Posts: 7,918
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    Hi Maylilac,

    Welcome to the Breastcancer.org community! We know it's not a place anyone wants to find themselves but we do hope you find the boards supportive.

    Making treatment decisions is never easy and getting a second opinion certainly sounds like a good plan.

    Others should be along soon to offer their words of advice but for now we encourage you to write down all and any questions that you may have for your oncologist and surgeon so that you have all the information you need in order to move forward.

    Wishing you well,

    The Moderators.

  • TNpotato
    TNpotato Member Posts: 57
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    Hi maylilac! A second opinion never hurts! In fact, my onc encouraged it. Good to get as much info and different points of view as possible. As a follow-up, did you have radiation to the internal mammary nodes when you received radiation?

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    Hello, Maylilac, and welcome! My regular onco encouraged a second opinion, particularly with a breast cancer specialist at a research hospital. I am a TN who didn't have a pathologically complete neoadjuvant chemo round before surgery, so I really pushed the Xeloda I read about on these boards. They tell me I've got a 20% chance of recurrence, and while I tell myself that means an 80% chance of NON recurrence, I'm wantig to make that last number even higher. I got my Xeloda today, and after one more fun day tomorrow, I'm going to start Sunday. I say go for it on the second opinion!

    TNPotato - thanks for the encouragement! You and the others on this thread have helped me so much. I feel as prepared as possible

    HarleyDream - thinking of you and hope that no news is good news!

    Btw, I misunderstood my dosage - when I went to pick it up, I was told to take 2,000mg x2/day. My anxiety went up, but I did tell myself I'd throw everything I could at this cancer, so we'll see what happens!

  • maylilac
    maylilac Member Posts: 2
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    yes--I had moderate dose radiation to the internal mammary nodes. Thanks for the responses! Getting a second opinion this week

  • brneyegrl6608
    brneyegrl6608 Member Posts: 16
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    Hi everyone. I was recently diagnosed and had a mastectomy and sentinel/axillary node removsl before starting chemotherapy. I start chemo the week of the 15th and I'm getting A.C. x 4 every two weeks and then Taxol every week x 12 with Carboplatin every three weeks x 4. I've been reading about Xeloda and have a question. Has anybody taken Xeloda if they had surgery first? All I can find are studies for people who did not get pCR after chemo but before surgery and the benefits of taking that drug. Also looking into metformin during and after treatment. I figured I get one shot at killing this thing for good and I'm willing to throw everything and the kitchen sink at this csncer.

  • TNpotato
    TNpotato Member Posts: 57
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    Hmm, not sure I'm the kinda case history you're looking for but I had AC/T, had a follow-up scan, did not get a pCR, had surgery, then had radiation/cisplatin, and THEN had Xeloda. Then a clear PET! :) (knock on my wooden head it stays that way!)

    I used the "kitchen sink" approach as well - I'll never know if the rads/cisplatin or Xeloda was what cleaned up the remaining cancer, but something worked. 

    If you've had surgery first though, I think they'd want to see how the AC/T+Carbo works for you first? 

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    I had the AC/T, then lumpectomy, followed by 6 wks of rads with coverage of the node fields. I did not get pCR after surgery. I was originally going to do a clinical trial that was either going to be Xeloda or cisplatin, but didn't get accepted. Then, after reading up on Xeloda for TNBC non pCR on this site, I talked to my regular onco who referred me to a dr at a research hospital. Now doing Xeloda thru reg onco One week down!

  • amw5
    amw5 Member Posts: 74
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    SuprSurvivr - How was your first week on Xeloda? Please share your experience.

  • lillo57
    lillo57 Member Posts: 5
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    l just completed a 6 month course of Xeloda, one week on and one week off. The side effects varied from cycle to cycle. Some weeks were worse than others, but l got through it and you all will too. Glad to be finished, and grateful to have had it

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    Great news, Lillo57! You go, girl!

    Today is day 12 of my first 2000mg/2x day 14/7 cycle. I'm feeling the fatigue especially in the afternoons/evenings, but I'm still going to the gym for my cardio! I had one day last week where I was traveling and didn't eat enough and ending up with several hours of nausea and throwing up. Then just this morning I had my first Big D. I can't really attribute it to what I ate yesterday - just chicken, unsalted steak fries, and blueberries for dinner. Maybe the blueberries. A couple immodium and 30 min lay down, and Iwas off to work! I've been eating oatmeal, chia, applesauce, & banana for breakfast. Lots and lots of water. Some foot tingles but greasing up with socks at night. I'm looking forward to not getting up early to eat next week! Oh, and I'm taking a Prilosec each morning first thing. The only day I forgot was the day I had the nausea. Go figure! I also take biotin, B6, and D3 supplements with my lunch.

  • BG46TN
    BG46TN Member Posts: 23
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    Hi everyone! I think I may have introduced myself a while ago in this group...I am TN, and have the BARD1 gene mutation..I did chemo A/C/T and just had a double mastectomy about 5 weeks ago...I did have residual cancer from the tumor left (no lymph nodes though yay) so after I finish radiation, I will be starting Xeloda too. My oncologist told me it raises my no reoccurance rate by almost 20%! those are good enough odds for me! I did ask him about Metformin and he didn't seem to think there was enough studies done on it yet...

    So I should be starting it in early August....How are the side effects? He told me it would be mostly fatigue and the hand/foot syndrome...I;ve skimmed through this thread quickly but if there is anything else you think I should know/ prepare for I would appriciate it!

    Thanks!

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    BG46TN, I'm just ending my first 14 days of 4000mg/day, and I've had fatigue, some nausea, and some diarrhea/loose stools. I exercise to help with fatigue, take a prilosec and watch what I eat for the other two. I'm trying to reduce diary and fats, go low fiber, and drink lots of water. Go with the BRATC diet - bananas, white rice, applesauce, white bread toast, and cooked carrots. I've added lemon slices to my water to help the old kidneys out. No alcohol to help the liver. Also i slather up my hands and feet plus wear socks and gloves for as long as I can take it at night when I go to bed. Try to keep your feet and hands from hot water too. Thankfully our our time with xeloda is short. This too shall pass, and hopefully we are stronger for the experience. Cheers to all you awesome ladies out there for all your shared experiences - such a great help to us newbies!

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    Hi, All. I'm on day 5 off my first off week, and I feel really good. Right back to pre-X. Went out for a nice, cheesy pizza last night, eating light breakfasts, keeping up with my cardio/weights. I was nauseaous days 1&2 off week, and my feet were tingly days 2&3. I'm glad to have a few days of "normal" before getting back on the wagon in a couple days. I hope you all have a great Memorial Day weekend!

  • DanielleT
    DanielleT Member Posts: 6
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    YES, HAVEA GREAT NON-cancer MEMORIAL DAY WEEKEND EVERYONE!!!

    Hi, I am a TN girl and just joined this group... you are ahead of me because I am just finishing up my last taxol next week, then a scheduled double mastectomy and nipple spearing reconstruction June 19. Not sure about radiation yet, but planning on XELODA no matter what the pathology is ... hoping of course for RCB0 / PCR ....

    I am def nervous for the surgery, drains, numbness and possible nerve pain ..... but no one is mentioning that here or other forums so I hope it'll all be ok....

    I too am in the kitchen sink group and wanting to throw everything at this thing atbthis end so no recurrance ... no a fun journey but I am IN FOR EVERYTHING needed to reduce met risk !!!

    I have had quite the road of side effects and allergic reactions ... NEUROPATHY is no fun!!

    Glad to read all of your posts... thanks

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    DanielleT - I had neuropathy in my fingers and toes, and it slowly went away over the last six months. I feel just the slightest bit on the tip of my thumb. Nerves take a long time to heal. Patience is definitely one of the things you learn with breast cancer recovery. I would suggest you have your onco refer you to a physical therapist who will give you stretches to help with recovery.

  • DanielleT
    DanielleT Member Posts: 6
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    thank you suprsurvivr... I just wrote to my MO team to Ask for prescriptions for physiotherapy, massage and acupuncture to address the neuropathy .... hope it lessens by the time I need to go on Xeloda !

  • sam0623
    sam0623 Member Posts: 67
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    For those of you put on Xeloda, did you ask for it or did your doctor recommend it? I am still in the chemo phase of things, but brought it up to the nurse practioner as an option if after surgery we find I did not have a PCR, and she was totally against it.. Like I was crazy for even asking.

  • amw5
    amw5 Member Posts: 74
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    Sam0623 - I bought it up with my MO, and he said 'you took the words out of my mouth' lol. Once I'm done with radiation, he will be putting me on Xeloda (just trying to keep my percentage of recurrence down as much as possible). Maybe you should talk directly with you MO instead of the NP next time (just a thought).

  • DanielleT
    DanielleT Member Posts: 6
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    hi Sam,

    My Doctor recommended it but I have also done research and it seems to be very effective to decrease chance of recurrence... take heart ❤️ and remember doctors are only human too .... this is your body and your fight ...no worries about their Reactions. Ask again and again if you want to try it and asK WHY they do Not recommend it for you....

    Find out the risks and side effects and balance that with the benefits

    I too am stage iia TNBC ...

    Let us know what you decide to do if anything ... making all these decisions is so hard and exhausting and then we second guess ... ig



  • DanielleT
    DanielleT Member Posts: 6
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    also Sam ... you already had your double mastectomy?? How are you doing ?

  • BG46TN
    BG46TN Member Posts: 23
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    Sam, my MO brought it up, not me, I will be starting Xeloda after I do radiation so probably starting in August....for 4 months he said.


  • BG46TN
    BG46TN Member Posts: 23
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    Does anyone know if you can have surgery while on Xeloda? I hoping it won't prolong my implant exchange surgery....I will probably start Xeloda in Aug...(finishing radiation in the end of July)

  • DanielleT
    DanielleT Member Posts: 6
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    I have the same question ... nomidea but will Ask the MO DOC AND THE PS DOC!!


  • sam0623
    sam0623 Member Posts: 67
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    Thanks everyone. I plan on bringing it up to my MO when I see her next week. I really like the nurse practitioner, but it's ultimately the MO's decision anyway. My MO and nurse practitioner only treat breast cancer, so I was surprised they'd never used it for this reason before.

    I have not had surgery yet, I still have 9 taxol/3 carbo treatments to go. I just want to be prepared when I get the final pathology- I think I will be less disappointed if I don't get a PCR if we have a plan and I know what the next steps will be.

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    Originally, my onco brought up a clinical trial that was either Xeloda or Cisplatin for TN who didn't get PCR who had remaining tumor at or over 1cm. That's exactly what I had and they sent on the tissue but I was declined. So then I asked why not just do Xeloda. He said it wasn't standard of care, but referred me to a research hospital about 3 hrs away. The dr there has another trial available but I had time between May and Dec (last date for this second trial). She was totally open to doing Xeloda, but I'll only be able to fit in 6 vs 8 cycles. As I'm scared spitles about recurrence, I said let's do it. I was really anxious before starting but so far it's been very manageable. As you know, every body reacts differently and the SEs are changeable by week and cycle. There's no promise here, just hope. I pray you all gain peace regardless of your decision to take xeloda or not. 🙏🏻

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    Good morning! I'm just finishing up week one of two on my second cycle of 4,000 mg/day. Starting on day 5, my feet (and sometimes a few fingers) have gotten sensitive. Feels burny and like there are blisters under the skin. I walk a little slow and gingerly and try to lotion up/rest up my feet. I find that cold soaks in Epsom water and putting my socked feet on an ice pad for a few minutes feels good.

    One of the kind ladies on the metasic BC/Xeloda group posted this article, which is actually very much the reason for all of us taking this medicine.

    I hope all of you TNs taking Xeloda are doing well with your treatments!

    http://www.cbsnews.com/news/breast-cancer-drug-xel...


  • SuprSurvivr
    SuprSurvivr Member Posts: 104
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    Also, for those wanting a link to the CREATE-X or Japanese clinical trial...

    http://www.abstracts2view.com/sabcs15/view.php?nu=...