Xeloda and TNBC
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Hi Everyone,
I am new to this group and so happy I found it. I am starting Xeloda next week and I’m scared to death. I have not started radiation yet as I am only 3 weeks post surgery. I’m wondering if anyone out there is doing Xeloda and Radiation at the same time and what the side effects are like. My doctors are thinking of doing them together and I heard the side effects on the skin can be worse? I’m not sure how true this is.
Any true life stories would be so helpful.
thank you very much
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KikiLee...the Xeloda is not too bad. I had fatigue and occasional nausea but overall did well, a walk in the park compared to infusion chemo! I did not exercise during my treatment (to protect my feet) and used udder cream on hands and feet twice a day. I did not have any problems with the hand/foot syndrome. My MO did not start my Xeloda until my radiation was complete. I have heard, like you say, that the side effects can be worse when doing them at the same time. Best of luck to you!
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SoniaL thanks so much for responding. I’m glad to hear Xeloda was not that bad. Sending healing vibes your way.
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Hello Kiki,
I am also on Xeloda. I just completed cycle 5 of 8 rounds yesterday. This week is my off week. I'm on a schedule of 3000 mg a day for 2 weeks on, one week off. I will finish in May.
Xeloda has been easier than AC-T chemo! My issues are relentless fatigue and achy body and sometimes sore feet...but not awful . I definitely feel better on my off weeks. I've had little hand -foot syndrome ... I use a cream with 20% urea and I also have been using jojoba oil on my feet. My feet are smooth , just a bit red sometimes.
I can't help with the radiation... I had it 10 years ago, so I couldn't have it again.
I know how you feel stressing on taking Xeloda. I did too. I worried myself sick on possible side effects....most of which haven't happened!
Take care
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Hi, Kiki. I did Xeloda about 6 months after rads so I can’t comment on that part of your question. I found Xeloda much easier to tolerate than other meds. I ran into some issues right off the bat with my blood counts but we lowered dosage to 3000 and I was able to keep going. I had numbness after exercising for a long time or being on my feet a lot. It always went away pretty quickly so my MO said it was ok to keep going. If numbness had persisted, I would have stopped exercising. As time went on, I kept picking up viruses. I’m done now and all symptoms pretty much gone. Honestly, getting ready emotionally to start another treatment was the hardest part but since I expected the worse and was pleasantly surprised, it worked out fine. Good luck to you!
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I have a question for all my triple negative sisters. I finished my last Xeloda just over a year ago and I I wanted to check to see if anyone else was dealing the same issues I've been struggling with.
Starting December 2017 (while I was still on Xeloda) I began an exercise and diet regime in order to get to a good BMI. I started walking five miles a day, six days a week and working out rigorously five days a week. I also started a healthy diet at the same time .
I kept up that same routine for nearly all of 2018. Over those 11 plus months, I lost exactly one pound. That's right. One freaking pound. And I wasn't even building muscle.
I know my body, and how it behaves with diet and exercise. Even after menopause, I normally would have lost fifteen to twenty pounds with what I was doing. But I didn't.
I knew something was wrong. I've been to 3 endocrinologists, thinking there had to be something wrong with my thyroid or parathyroid. But nothing showed up.
Then yesterday, while my daughter and I were discussing it, she said I wonder if Xeloda is to blame. It's a pretty harsh chemo. I replied yeah, but A/C was even more harsh. Then she said something that really has me thinking. She said A/C is an infusion chemo. Xeloda is an oral chemo. Maybe it destroyed all of your good gut bacteria and that's why your body is so messed up.
It was like a lightbulb went off. I know gut bacteria plays a huge role in health, and weight loss. And I'm particularly susceptible to issues with my gut bacteria after a nasty bout of C-diff about 6 years ago. I'm wondering if that's why I've struggled so much with my weight this last year.
Has anyone else noticed that kind of a change after Xeloda? Like your body isn't the same after the chemo?
I'm going to be starting a probiotic/prebiotic rebuilding process to see if that helps. I'd be interested to hear if anyone else has dealt with anything similar.
Thanks
Trish
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Bump?
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Trishyla, i'm late seeing your post. I think that the impact of the human biome on health is a hot area of focus, so hopefully more research will be forthcoming. You likely have a plan in place by now. If you are taking any otc probiotic supplements and if you have a port in, i would check for any warnings. I needed abx during treatment and was told I could take a probiotic to avoid intestinal issues. My sister ( a dr) was shocked and had me pull the documentation and sure enough it said not to use with a central line or port due to risk of yeast infection.
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For anyone researching Xeloda, i decided that i'd throw out one more update. I struggled with blood counts through out treatment. After my first Xeloda cycle, my counts tanked again. We lowered my dose a little and I made it thru the remaining cycles without going on treatment hold. I just had my b/w drawn, about a month after I finished and my counts are really good. First time my hemoglobin and platelets have been in normal range in almost 2 years. My MO pointed out that while Xeloda can lower counts, it's much less toxic than infusion chemo, like AC, so the recovery is much easier.
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Thanks for the reply, Flynn, and the info on probiotics and ports.. I actually no longer have mine. It stopped functioning about 3/4 of the way through Taxol, so it was removed during my BMX.
I am starting a regimen of pre and probiotics. I think I might be ultra sensitive to the loss of a good gut biome since my brush with C-Diff. Others don't seem to have the same problem.
Congrats on the good blood work. It's amazing how much better we feel once we get those "poisons" out of our systems.
Trish
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Thanks, Trisha. I’m actually hung up on probiotics with abx because one of my sons got c-diff from abx taken for a really bad ear infection when he was very young. I feel like he is always more sensitive to stomach issues since then. C-diff is nasty stuff.
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True, Flynn. And the worst part is they don't warn you about the side effects of so many of the medications.
I was prescribed Clindamycin for an abscessed tooth, with no warning about how horrible the side effects were. I found out later that it's banned in some countries because it can cause life threatening issues. If they had just told me, I would have started probiotics asap.
It took over a year, and three courses of Vancomycin (at 6 grand a pop) to clear it up. For something that could have been prevented with 30 dollars worth of probiotics. 😒😒
And you're right about the lingering digestive issues afterward. I think that's why the Xeloda hit me so hard. Just trying to get back to "normal" a year later.
Trish
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Sounds like you had quite an ordeal! I hope you are successful getting back to “normal” sooner than later. Antibiotics save so many people but they definitely do come with risks. My little guy was on his first round of abx ever and ended up with a horrible situation. Lucky for him, we were sent to a great GI who recognized his symptoms immediately.
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I go for surgery tomorrow and am praying for a pcr but I know if I don't have one, I'll be on xeloda. I feel like I read somewhere recently that xeloda was now showing mixed results in terms of decreasing recurrences. How much is it supposed to increase the odds? I have been freaking out for the last 24 hours as the ultrasound yesterday to place the radioactive seed showed a "wisp" where the tumor was. I know the technologist said that could be anything but I dread more chemo and the anxiety and worry that comes with tnbc.
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There have been mixed results from Xeloda. I just finished but had conversations about doing Xeloda last spring. Your MO would be the best source for odds/whether it’s worth it in your case depending on results. MD Anderson has a recurrence risk calculator for people who don’t get pcr and my conversations centered on those figures. You need the path report to calculate. Hopefully you will get a pcr and never need to have that conversation!
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I had a wisp on mammogram -- and a pCR! So try not to freak out! Wisps means nothing. Please realize they are super reluctant to call any amazing-looking imaging a "pCR" because the only way to truly know is the path report. If you are in wisp territory that is a wonderful result! I hope the pCR happens too!!!
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hi girls. I was wondering how many of you girls had chemo and the tumor didn’t shrink?
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Hi there! I am new to this forum too, I would like if some. Can help me to clarify a doubt, is there anyone here who just indicated xeloda as a chemo treatment? I worry because I see that many have had an intravenous chemo and after surgery they put xeloda. In my case, they did the surgery and then they only placed xeloda
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It looks like your question got cut off but are you wondering if anyone got Xeloda as their FIRST line of chemo?
I believe in the US Xeloda is a 2nd line chemo unless it is added to a first line chemo in a trial.
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yes that was my question! I did surgery my and already started with xeloda as firt line and really worry about that, I will ask a second opinion. I live in USA, but my treatment is in Colombia .
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Oh, thank FSM I found this thread! I was searching and couldn't find y'all!
I finished cycle 2 of "Madame X" on Sunday, and the side effects this second cycle have been absolutely terrible. So terrible actually, that I'm now starting short-term disability, and my onc is lowering my dosage by a third.
ucf - my tumor shrank with AC, but it didn't shrink with T. With all the research out there around dexamethasone inhibiting the efficacy of paclitaxel, though, I'm not surprised. Necessary evils and all that jazz.
gmanmon - you're right about the mixed results. A 2018 study showed that it doesn't help *everyone* with TNBC as much CreateX led us to believe. It *does* , however, significantly improve DFS of a a subset of people with TNBC, specifically those of us with a non–basal-like phenotype: https://www.ascopost.com/issues/january-25-2019/role-of-adjuvant-capecitabine-in-triple-negative-breast-cancer/. Unfortunately, I don't know which phenotype I am, so both my regular onc, and my trial onc (I was part of an immunotherapy trial because I didn't have pCr) both recommended capecitabine.
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Flynn - I've been taking a probiotic, prebiotic for the last year (with my entire team's knowledge!) and no one's said anything about me being in any danger because of my port. EEP!
That's not to say that you're wrong - I mean, the didn't even tell me not to take my multivitamin with Xeloda. *I* had to call to ask them and then tell them it wasn't okay to take most women's multivitamins with Xeloda because of the folic acid and folate making symptoms a lot worse. *headdesk*
Can you send me any info (or point me in the right direction) of the info on probiotics and ports? Many thanks in advance!
EDIT: Just did some research, and it's not ALL probiotics. It looks like Florastor is a bad culprit, though, largely because it contains a healthy yeast called Saccharomyces boulardii. When people with compromised immune systems and those with ports take it, there is a chance the yeast can take off and become a problem and infect the port. So make sure to avoid Florastor and other supplements with yeast, and especially Saccaromyces boulardii!
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Hi ladies!
I hope everyone is doing well
Mom had left breast mastectomy last August followed by radiation and now xeloda. Now she complains from occasional back and shoulder pain, not severe though. Her right rib hurt her when she moves. Is that normal during xelod?
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Hi. I am in my first week of the second cycle for Xeloda. I have been having daily headaches, in addition to nausea, since I started Xeloda. My oncologist is concerned that the headaches may be a result of a metasis to the brain, so I will be having an MRI shortly. Has anyone experienced daily headaches from Xeloda
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Hi
My mom did not experienced any side effects from xeloda expect for hand and foot syndrome in the final cycles. However, she progressed to stage IV during Xeloda with meta to lungs and bones.
I highly doubt you developed brain mets, maybe you are not drinking enough water?
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Are you taking any anti nausea meds? Those can give you a monster headache. For me, Zofran (Ondansetron) was the worst.
Good luck. Hope everything works out to be benign.
Trish
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Trish and Kkmay, thanks for your reply. I have been drinking a lot of water with Xeloda and throughout the day. I have not taken any anti-nausea meds because I had serious side effects from them when I was on AC. So I stopped taking them after my second AC infusion. The headaches started when I started Xeloda, so I assumed it was a side effect of Xeloda. However, my oncologist’s concern and the fact that this does not seem to be a common side effect is beginning to worry me.
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Hi.
For those who were started on Xeloda after radiotherapy, can you tell me how soon after radiotherapy was completed was it started?
Also, anyone who had Surgery before Chemotherapy, and was then advised Xeloda to reduce the risk of reccurence?
The SYSUCC -001 study had patients who had surgery before chemo receive daily Xeloda at 650mg/m2 twice daily for a year, and had found benefit.
So I was wondering if anyone was adviced this regimen.
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@breastcancerpartner Hi I had surgery after chemo then radiation and about 4-5 weeks later started Xeloda, that was after 2nd recurrence. However now 3rd time around Stage IV I am back on Xeloda with keytruda and it's holding me stable.
So not only is Xeloda used to help prevent recurrence it is also used in some Stage IV settings. Xeloda does appear to be a versatile tx given in several different ways. Stage IIIC I was 14/7 -2weeks on one off, Stage IV I'm on 7/7-one week on ,one off. Approximately 2,500 mg - 3,000 mg daily.
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@cookie54, Thank you so much for the information.
My wife had an upfront lumpectomy because our first surgeon was confident it was a fibroadenoma.
After the subsequent path showed TNBC, she was worked up and path showed a huge Axillary LN 3.6x2.7cm
So she received AC dose dense and Paclitaxel Carboplatin with 4 doses of Keytruda.
She had a revision wider excision of the primary lump, and Level 3 axillary dissection. All 18 LNs came back negative, but we can't really be certain about PCR because the lump was removed beforehand.
So I wanted to try and see if any leading oncologist would agree to Xeloda to reduce the risk of recurrence, and I'm worried about the window for starting it since she finished radiotherapy last week.
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