Starting Xeloda

[Pups2Cute]

Hello beautiful people! I’m hoping everyone is doing well and looking forward to summer.

My Mom will be starting a new treatment. She was on a trial in Canada and was on fulvestrant injections monthly with daily trial pill for a year. Her labs including her liver function have been excellent along with her bone scans. She tolerated the injections well. While her most recent June CT scan shows stability in the one liver met they’ve been watching, they now see two tiny new spots in liver. So tiny that when my Mom’s oncologist reviewed the scan before receiving the official report from the radiologists, she thought it was unchanged from the last scan and gave the all clear to my Mom. So you can imagine my Mom’s surprise when she got a call to come in for a follow up regarding the CT report a day after seeing her Oncologist as be receiving a great report. My Mom’s Oncologist apologized for saying it was unchanged when in fact there is mild progression. We understand she’s not a radiologist and clearly the spots are so small she couldn’t see them herself. The next line recommended for my Mom is Xeloda and I’m praying she also does well with this one. She felt so well and energetic with Ibrance for over two years and then Faslodex for a year so I really hope this works well with few or no negative side effects for a long time. It sounds like many of you currently or have had a good experience on Xeloda. I’m just a bit anxious about another change in my Mom’s treatment plan and want her to continue to feel well. Thank you for being so amazing!! Although my Mom and I don’t post often, we’re so grateful for this group. God bless Xo

April

[love2golfwell]

Sending hugs and prayers that your mom does well on Xeloda and that is gets rid of the new lesions and does not give her any side effects. Quality of life is so important on this journey. Stay hopeful and positive.

[Bettybuckets]

After a tiny progression I am moving on from 1.5 years in xeloda and already missing it after the first IV infusion after 20 years! The vomiting was worse than I remembered and I now miss xeloda even though I suffered with HFS…. But I always had energy. I miss that! I hope your mom does well in xeloda and remember they can dose reduce!

[13plus in reply to Bettybuckets]

I haven’t been on here for a while again. I’m so sorry to hear that you’ve had to switch to an IV infusion and that it made you so sick. Ugh. What are you on now?

[13plus]

I’ve been on Xeloda since the start of Feb and doing very well. I started at the 3000 mg dose was dreading it for all the possible symptoms but for the most part I was ok. The one issue I had was developing HFS quickly, despite taking proactive precautions to prevent it. So they reduced the dose immediately , I think we lowered it twice and now I’m taking 1500 mg daily. (That’s 3 pills) . My tumor markers plummeted really quickly each month, now they’ve plateaued but the blood work is great and I’ve got liver lesions so this is good news for me. Now just hoping it continues to work.

The hfs is completely manageable at this dose. I use either urea cream (10%) twice a day, sometimes alternating times with pure raw shea butter . I have to add that While we were sorting the dose out it went from my feet to my hands and now only on my feet again. Very odd really! Anyway, I hope she’ll do well with it too. Buy some gloves and cotton socks for bed (just a couple, don’t get carried away like I did). And start her moisturizing her feet and hands x 2 daily now, to have her skin in best condition before she starts . Also do an internet dive to find folic acid levels for foods she often eats as that will make the hfs worse . It’s impossible to avoid it but good to know what may need to be reduced . It’s great you’re supporting her as well as you are I’m sure she appreciates your love

[BluHydrangea]

I’m also just beginning Xeloda. First couple of days felt off— better, back to feeling like myself today.

One tip—my oncologist prescribed Diclofenac Sodium topical cream. ( Voltaren arthritis cream) I use 2x day to prevent hand foot syndrome. Apparently there was a study using this and it’s been successful in holding off hand and foot issues.

Take care and I wish your mom success in Xeloda!

[Hazelgreen]

Hello, April!

I have spots in my liver which I basically ignore because my liver continues to function normally. The liver is a huge organ, unlikely to malfunction. I hope your mother is having bloodwork done every three or four months. This will tell her whether her liver is malfunctioning.

I was diagnosed five years ago when I was 73. I now take ribociclib with letrozole (week days only). This works well to keep my cancer markers in the normal range. The cancer (present in most of my body) has stopped growing, and that's all that matters to me.

I, too, am a Canadian, originally from Ontario, living in Saskatchewan where the physicians I meet follow only standard procedures. The oncologist who now handles my case is okay with my taking meds on week days only as he realizes that it is my body, my decision.

It is nice that you are taking an interest in your mother's treatment, but I hope she is making her own decisions in the end.

Best of luck, Cindy

[TammyCross]

I, too, was very happy on fulvestrant and Ibrance. The least side effects I have had, and NEAD, but a little progression after two years.

I started Xeloda almost a week ago. I ordered cotton socks and gloves so I could moisturize overnight, got a prescription for diclofenac, bought udder cream with 40% urea, and the Xeloda came with a tube. I don't have hand-foot syndrome and don't need to use all the stuff I bought.

What I do have is amazing fatigue. I sleep and nap....Getting out and exercising does a lot to energize me, although I nap after, but if I stay at my computer working, it is hard to stay awake.

So -- so far so good, no bad side effects, but the fatigue is bad.

Oh, I am on 2000/day; two 500mg pills in the morning and two at night. By my bmi, I would be on 1500 twice a day, but my creatinine was a bit high. Also, I am on the 7 days on, 7 days off schedule. The standard is 14 days on, 1 week off. Research shows that the 7/7 schedule is equally effective and significantly reduces side effects.