Xeloda and TNBC

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!

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

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

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.

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

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

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.

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!!!

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

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 .

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!

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

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