Xeloda and TNBC
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Hi all!
Welcome, Lifealoft Kelly. 2 mm luckily sounds like very little residual. I wonder if it really is RCB2 and not RCB1? Unless you had a high % cellularity or lots of lymph node involvement? Anyway, I'm sure your MO will look into it, too. I'm just pointing it out because RCB1 is supposed to have very similar low risk to pCR, so you may get lucky and not feel the need to do extra chemo. But if you do end up on Xeloda, you can see we've all had a range of reactions. I've barely had any side effects, but can see that others are getting a range of fatigue, the big D, and HFS. I hope you sail through it! I'm close in age (46) to you, and fully get it that you want to do everything possible. I'm with you!
Kelly Chameleon, I hope you get to take all 4 trips and really enjoy them! Hopefully your stomach settles down. I've been able to take my trips on Xeloda (currently enjoying an awesome week on Cape Cod with lots of adventures and activity and no problems). My fingers are crossed that you get to enjoy your travels. And the hip hop recital must have been absolutely adorable. Glad you could be there,even if not feeling 100%. Thinking of you and hoping it gets easier!
TNPotato, I'll be thinking of you next week for your surgery, and sending positivity! I can't remember which type of surgery you are having (and whether it means big recovery or small recovery), but of course it's all nerve-wracking, but I am sure you will sail through it and get to cross off one more hurdle in this thing! Good luck.
AggieMegs, good for you not reading about cancer every day! That sounds like a very good idea. And thanks for the yoga reminder. There is a yoga-on-the-beach class here that I think I'll join tomorrow. I'm sure it's yoga-light, but maybe it will get me back into it for real. I was doing it regularly last fall, and then kind of got out of it. It is so good for body & mind. I am always so embarrassed though, because I'm surprisingly inflexible (can't touch my toes no matter how hard I try!). I know, all the more reason to go...Anyway, keep it up!
KnitnPurl, I had never done any eastern medicine before cancer, but when I was diagnosed, I figured I'd be open to everything! So I started meditating, acupuncture, more yoga, even tried reiki, massage, etc. The acupuncture was my favorite. I enjoyed it, but had a hard time pinpointing if it was helping me or not. I loved the practitioner I found,and it was definitely relaxing to be there. But it was expensive, and I eventually stopped going. I miss it, though! I'm so glad that you get clearer benefits.
4everStrong, your post is deleted so I don't know what you had to say, but welcome and I hope all is going well for you.
Jacklin, hello! (PS are you having problems with the TNBCFoundation website? Now when I try to get on, it takes me to a GoDaddy site?)
Thanks to all on this thread....it really helps me to feel I'm not alone doing this stuff!
As for me, today is the last day of my 7th cycle. I'm mostly thrilled that I'm not getting side effects, but since I'm an over-analyzer, it does make me worry that the Xeloda isn't working for me then. I'm on the highest recommended dose and I don't even have the HFS now, pretty much nothing. I'm not tired, I've been running 5 miles a day, no GI issues, nada. Slightly dry eyes. Not trying to brag here...truly this worries me. Ha ha ha maybe I'm getting a placebo. But anyway, hopefully it's working (or isn't needed in the first place). OK, I better get off the computer and outside for my run.
Take care, ladies!
Tulips
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TulipsAndDaffodils - Thanks so much for the kind thoughts! I'm having a lumpectomy + SNB. Hopefully I will heal quickly, won't need any additional surgery and can get into rads/chemo by end of month/early Sept!
>>"I'm mostly thrilled that I'm not getting side effects, but since I'm an over-analyzer, it does make me worry that the Xeloda isn't working for me then. "
I've read that from several posters that were quite active during chemo (walking/jogging/swimming/etc) and from what I can recall, they had success with treatments, but reduced SEs as a direct result of the exercise. In fact, a future-in-law of mine who went thru her own breast cancer treatment yrs ago (and is still kicking!) SWEARS by exercising as a booster for all treatments and as a recurrence preventative.
KnitnPurl - Thank you as well for the kind thoughts! And I will!
I'm trying to keep a mantra that I read here on the boards in my head - "Every day is a new day that brings me closer to healing." I'm trying to hang onto those positive thoughts and just take it a day at a time.AggieMegs - "trying to get my darn mind off cancer lately" AN EXCELLENT IDEA!!
I was going to ask you but forgot earlier - I see that you went thru a platin chemo and I may be doing that with rads or after. What kinds of SEs did you have from that treatment? I haven't read much by people who've been on them.0 -
Tulips, thank you so much for the info and the positive thoughts! I see my MO next week, it will be interesting to see what she says. Also going for my rads simulation tomorrow, looking forward to getting that started and over with!!! So good to hear that you are doing so well on the Xeloda, I had HFS 24 years ago with my first pregnancy, it wasn't fun, but I dealt with it.
TNpotato, I had Carboplatin with my Taxol so it's difficult to tell which SEs were from what. I had the Carbo every 3rd week, I was definitely more tired on those weeks, and it did effect my counts more than when I had Taxol alone. Best wishes to you!
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LifeAloft - Good to know! And thank you!
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Good morning everyone,
Good to 'see' you all. I'll be starting xeloda on Monday and am feeling somewhat apprehensive as I read all the SE's people are getting. Irony for me since I'm currently battling constipation, next week it'll be diarrhea - that's cancer treatment huh?
Tulips - yes, I had the same problem with the TNBC site. Yesterday it was sending me to the go daddy site you referred to, this morning there's nothing at all. The issue has now been resolved and the site it up and running again. Always good to see you and thank you for posting the encouraging ideas while on xeloda treatment. For sure I plan on keeping up the physical activity - when I read all the things you do, I realize I'm a couch potato! I've been feeling pretty good the last few weeks, especially as I get farther away from radiation. I've been doing so many things every day, enjoying the time with my daughter this week and having a blast. It's been so nice to walk and not feel constantly winded or the need to sit down and rest. I think that's why I'm feeling the sense of dread about starting xeloda on Monday, knowing that I'll probably feel crappy again - I'm hoping that I'll be like you with minimal SE's.
TNpotato - know that I'll be praying for a successful surgery next week and a speedy recovery. For sure you'll have feelings of anxiety as the surgery date approaches, I know that I was struggling before mine. I wanted the cancer out of my body and wanted it out now, not in a few days. At the same time, there was the knowledge that it was surgery, anesthetic, etc.
Welcome Lifealoft, glad you found us but sorry you had to find us because of the cancer. Ask all your questions here, everyone's been incredibly supportive and knowledgeable. This site was great for me to read about the various treatments I was about to undergo and helped me prepare.
Knitnpurl, love the idea of adding acupuncture to my treatment plan. I hadn't thought of it but now that I know you've had such a difference in terms of your energy levels, I'm definitely going to explore my options. Thanks for sharing, in detail, the change it's made for you.
KellyChameleon, like you, I have a big trip scheduled for the end of November to mid-December. It is supposed to be a celebratory trip for the end of my cancer treatment, not knowing that I was going to have xeloda as well. Xeloda was approved for use in Canada mid-June so it's fairly new for us here, I'm the first patient for my oncologist. I hope that you get to take all your planned trips, please keep us posted, ok?
Aggiemedxs - ah yes, yoga. Thank you for the reminder, I've got to get my butt in gear and get back to yoga. I think with it being summer, things have slowed down here (a lot of the yoga classes I like have been more spread-out) so I've not been as diligent in going. Between you, Knitnpurl and Tulips, I'm motivated to get moving even more.
I can't tell you all how much I appreciate your posts, it helps me keep my perspective and realize I have so much to be thankful for. I so appreciate you sharing what your SE's are so that I can be better prepared. I'm getting a good reminder how important it is to stay active, no, be more active during xeloda treatment.
Hope everyone has a wonderful day today. Enjoy this weather, for us, it will change any day now and then I'll be longing for the warm weather again.
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Hey Jacklin!
Hope the Xeloda does wonders for ya and thank you for the kind thoughts! I'm trying to keep busy and not freak out as the surgery date approaches. (Annnd if that doesn't work, I've got leftover anxiety meds in the cabinet! lol)
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So far so good on xeloda, just a tiny bit of nausea but nothing that was overwhelming.
TNpotato - I keep on thinking about your surgery on Thursday. Know I'll be praying for you and your surgeon. Let us know how it's going, when you have a moment, ok? Just breathe in and out, deep breaths. We'll be here to support you.
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Jacklin - Thank you so much!
I'll let everyone know how I'm doing as soon as I can! ((HUGS))0 -
Yes, totally thinking of you TNPotato!!! Good luck and make sure everyone waits on you hand and foot for a while ;-).
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And Jacklin, glad to hear it's going okay. I hope the nausea clears up quickly!
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TNPotato - Sorry, somehow I haven't seen any of the recent updates on here! Regarding my experience with Carboplatin, I got it at the same time as Taxol every 3 weeks. I definitely felt more exhaustion on the weeks I got both, and a little nausea, and it affected my counts pretty drastically. I had to get 2 blood transfusions during the time I was getting Carbo, because it kept knocking my counts way down. Other than that....no big deal, really.
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TN - Have you had surgery yet? Hope all is going well and you're resting and getting taken care of.
aggiemegs - Hope you're feeling better.
I'm doing all right. The on week went better and really just came out of it with extremely dry hands and feet. I've had some peeling but no pain or blisters. I still used the gold bond rough and bumpy for a few nights on my off week and then switched to aquaphor and eucerin in the tub to help with the dryness. My hands feel almost normal now. The newest development is I developed an ingrown toe nail last night. Does this never end? The only other time I've had an ingrown nail was during my last pregnancy over five years ago. Well I'm all swollen again, I guess, and the toes don't like it. Felt so silly, but I called the oncologist to check that if I should treat this any differently than a regular ingrown nail since it's probably due to the Xeloda.
Next week I head down to Tampa to Moffitt for my six month check up. Feels like it's been forever and not just six months.
Take care all and keep us posted.
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Hi everyone!
First off, thanks to all of you who were so kind in sending positive thoughts/prayers/vibes my way! HUGS esp to Jacklin|Tulips|knitnpurl! I had surgery late on Thur, and am starting to get up and around more now. And I have had great nursing care by all my family. Very fun to call on my 'room service' and have my daughter/son/hubby take turns pampering me...Had a lumpectomy + SNB and the doc said the tumor and intra mammary node that were in the breast (which responded well to the AC+T new chemo) looked good, as well as my SNB. So THAT'S good news! Now awaiting pathology on all that... But of course, I have those damn internal mammary nodes that had "incomplete response to the AC+T" so I knew this wouldn't be a pcr deal. I feel like I failed, my neo chemo worked but in a weird way... Oh well I can't fixate on it, it doesn't help the situation. I just need to focus on healing and getting ready for rads and more chemo!
knitnpurl - Glad to hear the gold bond seems to be really helping, oh but your poor toe! Have you ever tried Outgro? My daughter gets ingrowns and that works great for her. (we get it from Amazon - hard to find in stores nowadays) I hope it gets better soon! And good luck on the follow-up!
Positive vibes for ya!! aggiemegs - Thanks for the info! Two transfusions... That's no fun at all! :^/ Did they have you on a Granix/Neulasta shot at the same time as chemo?
Hugs to you all! Who knows maybe I'll be on the Xeloda again soon... Hope Xeloda kicks all the cancer ass it can for you wonderful women!
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TNPotato - Honestly, in the thick of chemo, the transfusions were no big deal, since they made me feel so much better! I was not on Neulasta or anything, since my white blood cells were unaffected, it was my hemoglobin that was the issue. Hope you are feeling better!!
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Good to hear that you are starting to feel better TNpotato!!
I had an interesting visit with my MO last week. My surgical pathology showed 2% ER positive and she brought up Tamoxifen, which really threw me for a loop, that was totally off my radar since it was only 2%. She said it may hold off a possible ER+ occurrence. I brought up Xeloda and she kinda smiled and said "I had been thinking about that". So, she is going to do some research and we will discuss it further when I see her in November after rads. So I'm not sure if I will be joining you ladies or not.
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Hey everyone - thanks for all of the kind words. I have been so dang busy lately between work and travel, I haven't been able to check in. The good news is that tomorrow is the last day of this cycle, and I've been able to ward off the worst side effects. A lower dose and taking an acid blocker twice a day has helped so much. My feet are pretty sore, but it's manageable. I was able to have a great vacation at the beach with the family.
LifeAloft, I'm in a similar position! I was originally diagnosed triple negative, but my doctor sent off my sample to the Mayo Clinic, and it came up over 24% PR+. After surgery, the tumor that was left was completely triple negative. But she wants me to consider having my ovaries removed and doing Tamoxifen (or something similar) as well. That won't be until I'm done with this step, so not until early next year. So many things to consider!
TNPotato - glad your surgery went smoothly and that you're on the mend!
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Hi all. Just wondering if everyone that takes Xeloda is getting 8 rounds? My Dr said I'd only do 6 rounds. Kind of wondering if I should ask why?
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I'm doing 8 rounds - that was the only option that she gave me. My 2nd round was cut short - I stopped after a week because of side effects, but she's counting it. So I just wrapped up round 3. SO ready to be done!!!!!
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Hi everyone,
I'm just checking in and sending more good thoughts in everyone's direction. I have one week left on this 8th and final round! Woohoo! I'm so curious to see how I'll feel next week when I'm done. I feel like I'll be thrilled, but I've certainly read enough about people who mentally feel worse land more anxious when they're done, I guess because they are no longer actively fighting the cancer so their worry grows. I can't wait to see which type of person I turn out to be!
Montana, I'm not sure there's a totally set protocol for this. The CREATE-X study had some women get 6 rounds and some 8 rounds, so presumably there's a good rationale for either quantity. However, it seems that the majority of us have been assigned 8 rounds (unless side effects end up interfering with that), so I think you should at least inquire into the thinking so that you feel good about your plan. I notice in your signature that yours is detectable in your bones. Maybe there's a different plan in those cases? If you don't mind me asking, will you be done with treatment if the Xeloda works well for you? Or is your MO giving you six rounds of Xeloda and then moving on to another treatment? Good luck, I'm hoping for Xeloda to work really well for you!!
Bye everyone, take care! I hope everyone's hands and feet are holding up okay!
Tulips
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Hi Montana! Glad you found us.
Tulips - Congrats on slogging through this. You've certainly done your time and seem so upbeat!
LifeAloft and Kelly - Take care of yourselves! Good to hear from you.
I had my 6 month surgery check up today and first mammogram (on the right original to me side!) and all's clear. I've got my reprieve for the time being. Side effects from Xeloda are holding steady. To look at me though, my feet look absolutely awful! They honestly don't hurt like my hands can, but the skin is peeling so it looks really gross. My hands aren't too bad, but they get so dry and red. Sometimes they hurt, but I can't describe it. It's not tingly or pins and needles or even achiness. And it's not intolerable -- don't want to scare anyone -- I just don't have the words.
I think we're trying for 8 rounds, but it might end up at 6. But are those 8 rounds in the study all 2 weeks on? I honestly have no idea when I'll be done with this. There's also a TapImmune vaccine study for triple negative that's going on at Moffitt. I'm not eligible at the moment because of the Xeloda, but perhaps afterwards I'll be able to get in. Might as well try to throw everything at this.
Take care ladies.
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My last PET showed it had spread into one Vertebrae, my pelvis, and a spot on my sternum. My Doc says he'll do a PET after Xeloda and then we'll see from there. Hopefully it will give me some time off of treatment. I got 5 months off last winter after doing Taxitier. I'm planning on going to Mayo after I'm done with the Xeloda to see if they have anything that the cancer center I'm using doesn't know about. Nice to talk to others in the same boat.
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TulipsAndDaffodils - >>" I have one week left on this 8th and final round! Woohoo! " I'm so happy for you!
) I hope you are able to move forward and smile more!
knitnpurl - "I had my 6 month surgery check up today and first mammogram (on the right original to me side!) and all's clear. I've got my reprieve for the time being. Side effects from Xeloda are holding steady." YAAAY!!! That's great news!!
LifeAloft - Thanks for the kind words! I'm going to be starting rads soon as well, and it sounds like they want me to do Cisplatin at the same time. Kinda nervous about the whole thing... Guess we'll see what side effects are next on the menu! :^P
kellychameleon - I'm so glad you had a good vacation! Hope we all can get some sun and relaxation into these last days of summer!
And thanks for the healing thoughts! Only a few more rounds of Xeloda to go!MontanaLady - I hope the Xeloda works wonders for you!
I will keep you in my prayers and thoughts!0 -
Dear Beatifl Women ,
My mom had 4 AC,12T and surgey.After surgery, His report says that Nearly pCR and no nodes involment.
As a result Our MO asked us to begin Xeloda
What do you think about our risk of reccurance ?
Regards ,
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Hi Ahmet,
I'm sorry I don't have enough information to answer your question about your mom's risk (and I'm sorry she's going through this). I will say that my Medical Oncologist would not have given me Xeloda if I had been closer to a pCR (i.e. if I had been Residual Cancer Burden 1, he would not have. I was actually RCB2, and he still was reluctant but I pushed). I believe there are studies that show that women with very minimal residual (i.e. RCB1), their prognosis is basically as good as pCR. I would ask her doctor about this. He/she should be able to be very clear about her risks and her RCB level. Although I have found Xeloda very easy to tolerate and it has given me a lot of comfort to know that I did "extra" to try to prevent recurrence, so I have no regrets, I would think if one's risk was truly tiny, it would not be worth it. Good luck with her decision,and keep us posted!
Tulips
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Well girls, I'M DONE! 8 two-week rounds over the course of 24 weeks completed. 954 pills swallowed. Lots and lots of lotion applied. 16 continuous months of various cancer treatments finished!
I'm so happy. Seems so weird to move on to post-treatment life. I will be thinking of all of you warriors, and sending very best wishes! Thanks for all of the support. You are all fabulous. XO
Tulips
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Big congratulations to you Tulips!!! Now go and enjoy life!! Wishing you the best!!!
Kelly
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Congrats Tulips! It's a long trip but you've made it. Wishing you continued good health and enjoy life!
Stephanie
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So happy for you Tulips!! Enjoy everything, live life!
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Congrats, Tulips!!! Yay for finishing it all! That is awesome.
I went on a weekend trip to Broken Bow, OK and stayed in a (super nice) cabin with 5 other families, and I felt great. We canoed, rented a boat, swam, played lots of games, and drank too much (oops!). It was so much fun. I started a new cycle last Thursday, so the trip fell on the first weekend. So far so good. I'm making sure I take my acid blocker and using lots of lotion. So far so good.
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