Anyone stage 3 taking Xeloda?

Just thought I'd chime in that I'm another ER/PR+ with residual disease who requested Xeloda. My MO only prescribes it for TNBC. She said pretty much the same as you all have been told, that hormone therapy is really the best line of defense for hormone positive. I know that I had a poor response to my neo-chemo, (AC had little to no effect and Taxol wasn't much better). And It's a lot to live with. But I was making myself crazy trying to second guess my doctors and needed to just accept their plan for my treatment. I'm at an NCI, major research hospital so I trust that they are the best of the best. Plus it helped hearing from others on our earlier thread that the best doctors all over the country were saying the same thing. And I appreciate so much that sharing of experiences. It is interesting to hear that there may be questions about that CreateX study. I'm keeping my eye on Xeloda for sure! And also Ibrance. I tried to sign up for PALLAS but I was too late after my diagnosis dat

Thanks for thinking of me - it was ok. I can't quite feel like celebrating because I will continue to be in the high risk group. Another scan in 4 months, then if that's ok it will go to 6 months. Interesting discussion with my Onc on AIs and body weight - I reported on the thread about weight. Turns out he literally wrote the AI book - the first trial was his PHD. My friend told me the professor he worked under whose research led to the development of AIs said it was the only trial he'd ever seen without a single missing data point. I guess I have to appreciate my docs thoroughness and experience and go with the scans. He wasn't prepared to let me off even though I was clear about how agonising I find it. Hoping to decompress and get positive about the next for months. Thanks for your support.

Miamimi - I'm curious, which doc said "cure"? MDA or Stanford?

Hi Miamimi,

I'm just curious as to what is driving you to want to stop taking the Xeloda? Especially since you are not experiencing any side effects. What is the down side of taking it (besides the obvious of it being more chemo!)?

I just had my mastectomy 5 weeks ago on Monday. I will start radiation on April 11th finish in May and then my Oncologist wants me to take the Xeloda for 6 months. I'm not sure about taking it. How have you felt since you have been on it?

Thanks for your time on this!

.

Hi Ladies,

Just thought I would chime in with an update. I am on Day 6 of round 6 of xeloda (not that I'm counting, lol). All and all things have been pretty good. As harleydream mentioned, much much better than taxol and AC. I am working most days and can almost keep up with my toddler. I have had a few issues with diarrhea, one flair up of hand and foot (red blistered feet early on), low WBC counts, and mild anemia (which is adding to the fatigue). I think the effects are cumulative as I feel a bit more 'chemo-ish' this round. Only 2 more after this!! I am glad you are doing well harleydream.m. Keep us posted.Hugs to everyone.

Hi sorry I missed you were asking a question about where my Oncologist is. I am at Uniersity of Kentucky Markey Breast Center. They are amazing.

I have a few issues from having a brain aneurysm in 2013 ( April 25) so it seems some of the chemo drugs add issues to that. Like the AC made my left arm have tremors I had a stoke on the left side my left arm was fine except fine motor skills now due to the chemo it shakes. It's getting better but they say it should go way in 6 months but no guarantees. I worry that in the process of trying to make sure the cancer doesn't come back I cause more issues. Plus there's no guarantee the Xeloda will keep it from coming back. Just really not sure what to do.

Hugs to all,

Ni

I just found this group today. I am stage 3A. I started out at 2b and after an MRI they changed it to 3A, but I didn't hear about it until 4 months later when I was talking to surgeons. I had a mastectomy a week ago, I meet with my surgeon to discuss my pathology report tomorrow and same thing next week with my MO. I did find out there is residual cancer after neo-adjuvent chemo .. in my nodes, but not in my breast. I guess I start radiation at the end of May. My MO just mentioned Xeloda on the phone yesterday as well as clinical trials. I read what the Xeloda website said for side effects and was very worried, it sounded like the worst medicine in the world, but then again, I never read all the information for AC + T because I was so overwhelmed and depressed having just heard one month prior to starting it. Love to hear updates.

is this the same thing as zolodex? I took the injection until I had my ovaries removed in Nov.

Hi Ladies,

I just wanted to share that this evening I will be swallowing what, god-willing, will be my last dose of chemotherapy ever, the culmination of round 8 of Xeloda and round 24 of chemo in total!!!

As I reflect on the past 15 months and on taking this last dose I am struck with a wide array of emotions. It is an incredible milestone, and I should be ecstatic. I am ecstatic; but I have to admit that I am also quite scared. The sheer nastiness of this medicine must prove how incredibly powerful it is, and now the shield that I have become accustomed to will be stripped away.

It is time for me to have faith that my amazing medical team did all that they can to rid the cancer from my body. I am praying hard for a clean PET scan so I can focus on healing and preparing for the rest of my reconstruction surgery in August. I know that one day cancer will not be the first thing I think about in the morning or maybe even all day!!

Hugs.

Hi, GrendelDog. Welcome but sorry you have to be here. Looks like you've had a journey. But like all journeys, taking the first step is sometimes the scariest. While you are not triple negative, you will find a lot of information about X on the Xeloda and TNBC thread. I'm starting cycle 5 of 6. I posted some things to make sure to have on hand before starting on that other thread so give it a read thru. I'll check back or you can DM if you have any questions. My main SE are HFS, fatigue, a bit of nausea and a bit of diarrhea. I hope you are blessed with a smooth path. ✨🙏🏻✨.

Hanging_in_there, have on hand some Prilosec or Zantac, which you take in the morning before your breakfast dose, if you have nausea issues. Also have zofran for nausea (prescription) and Imodium (liquid or tablet) ready for diarrhea. Eat a good breakfast and dinner with protein. Do not skimp on meals. Try to limit milk intake. I do daily Vitamin D3, B6, B12, and biotin with lunch. Drink lots of water, no alcohol, to protect kidney/liver. Try lemon/cucumber/mint in water. No antacids like tums or malox. Some people also say to stay away from green tea and other antioxidants during treatment. Treatment is typically 14 days then 7 off. Some drs change to 7/7 if symptoms get bad.