Xeloda and TNBC

I finished the 18 week (6 x3 week) cycles of Xeloda, I was in the clinical trial and was in the Xeloda arm. I also had very minimal side effects for the first 3 cycles and continued to do all my normal activities with lots of walking, Cycle 4 is when hand foot kicked in. At first I didn’t have much peeling, It was painful, burning feeling. Very sensitive to hot and cold. I could only wear tennis shoes and had to minimize walking. Less than 1 mile total all day. I worked but that was all I could do. I took 3500mg mg per day for 14 days then 7 day break. I would improve during break but each cycle got more intense. The severe peeling started after I finished. I lost the entire layer if skin. I’ve improved so much thought I was in the clear. Today my finger tips started cracking and my hands are red and sensitive. I had increased my walking over the last two weeks to 4 miles. Tonight my feet are really sore. Recovery is a process!! My counts stayed good.

I had my MO check my vitamin D after round 1. I was at 19 (normal is above 30). I was put on the high dosage 50,000IU (on per week for 8 weeks). I now take 2000 IU daily. I’ve been at 42 for 2 months. After 2 weeks on the vitamin D my energy increased significantly.

I agree with Hanging In There. It’s important to reduce your activity level to minimize side effect. I also used the 40% Urea from Amazon. I couldn’t use it on my hands though. It made them itch so I only used on my feet and used Udderly Smooth and Working Hands on my hands. I moisturized my hands continuously.

Good luck to everyone on or soon to start Xeloda. I hope you tolerate it well.

I am starting Xeloda next Monday.

My MO was really thinking I would get a PCR. MRI showed could hardly find the cancer and I still had one Taxol left. Even had my port removed during BMX. But nope, 7mm found on surgical pathology.

So 6 to 8 rounds of Xeloda. 2000 twice a day.

After chemo, surgery, and radiation, I stater Xeloda to help reduce the likelihood of re-occurrence. I became severely dehydrated because of mouth and throat sores and received IV fluids for a week and a half. For more than two months, I had massive blisters on the soles of my feet, which made it impossible for me to walk. That being said, if your doctor suggests trying it, do so. Every day I wish I could have continued treatment in order to feel more proactive in preventing the return of my cancer

Hi All,

I am joining your ranks as of today. First dose tonight. Will be taking 4150 mg and I weight 155 pounds. I feel like this is more than most of you, but I'm willing to give it a try. Not gonna lie, I'm a bit nervous, but gonna give it my all.

R

Kmajor, glad to hear you are on your 4th round with few side effects. I hope I can make it as well. I am doing 8 rounds as well. Let's keep our fingers crossed.... I do have nausea meds and diarrhea meds just in case.

R

As for dosage my MO said FDA approved 1250 per square meter but he (and most he knows) prescribes 1000 per square meter.

Not sure what is meant my square meter. Seems like they took my weight and divided by 100 then multipled by 1000 to get rounded dosage. I saw the pills come in 150 or 500 increments.

My husband is more nervous than me starting this med. The last 6 weeks since chemo ended, I have been more like myself with the light in my eyes again. He is worried about another 5 1/2 months of chemo and me being down and out again. But gotta keep pushing and fighting

Hi ladies-

I am picking up my last prescription of Xeloda today. I can't believe I will be finished with this in 2 weeks! Overall, I have felt pretty good throughout this treatment so for those of you worried about it- it is so much easier than the chemo you have already completed! I started to get a little bit of soreness in my feet towards the end of cycle 6, but that was completely resolved by the end of my off week. My feet are peeling pretty bad, but it is not at all painful- it just looks like I really need a pedicure. Good luck ladies! I am so grateful for this extra treatment to hopefully prevent recurrance.

I am on my first off week as of yesterday. My two weeks on were pretty uneventful. I did take a phenergan on day 12 because I was feeling a little nauseous and had to pick up my daughter from school in a hour and didn't want to chance my feeling well.

I am having body aches-lower back, hips, legs and even ankles. It comes and goes. I don't know to blame the Xeloda or the last 8 months of treatment.

Hi Rebekah...I'm on day 3 of Cycle #6 and for the most part my symptoms have not gotten worse each time. I was afraid they would, but so far so good. I get slightly nauseous here and there and have had fatigue but that's it and that has stayed the same through each cycle. I'm fortunate so far (fingers crossed) that hands and feet are doing fine. I am walking as little as possible and using the urea cream. I need to walk for exercise so bad...feeling very fluffy here lately...but I want to protect my feet.

Are your feet peeling, blistered? I hope it will not get any worse for you!

Sonia

Round 2, Day 10 of 14 days on.

Woke up this morning with tender red feet that feel the tenderness when walking/standing. Hanging out with my feet up as much as possible today.

I know it’s on the list of side effects but I can’t say I lost my appetite. There are some mornings I just want to sleep in but have to get up and eat something to take my pills. I am afraid to take them on an empty stomach.

I am day 10 of cycle 3 and Iike clockwork the side effects hit me today. Tender feet, stomach cramps and loose stools.

JudiJo...I have some days when I don't have much appetite either. I'll actually feel a little hungry but nothing sounds good at all. Your does does sound high though. I'm also right at 150 pounds and I only take 3000 mg a day.

Jennifer...same here, I'm afraid to take the meds on an empty stomach so I have to get at least a little breakfast in every morning. And I have some body aches like you mention. Yeah, don't know if it's the meds, the lack of exercise, or just all we've been through. I've started having real trouble with my hands going numb. My MO says that should not be a Xeloda side effect, so wondering if I have carpal tunnel!

Rebekah...how are you doing? Hope your side effects aren't too bad.

I start Cycle #8 on Sunday - I'm almost done, whoo-hoo!

Hi everyone...just checking in. I took my last Xeloda pill yesterday! So happy to be done although my side effects were very minimal. I was fortunate to have no trouble with hand/foot syndrome. I have some numbness in my hands, but I think I might be having some carpal-tunnel issues rather than it being from the drug. I've also been fatigued and hope to see an increase in energy once the Xeloda is out of my system. Hope you all are doing well!

That's great news Sonia I know you are happy. I start round 8 on Wednesday so I'm almost there to but then I move on to radiation. I'm a little nervous about that cause I'm not sure what to expect.

Jennifer I hope your side effects get better soon. You are halfway there and round 8 will be here before you know it. Do you have to do radiation to?

KMajor, no radiation was not recommended since I did a double mastectomy, had clear margins, no lymph node or lymphovascular invasion. Part of me is relieved to not have to go through that but the other you want to throw the book at TNBC.

I had bloodwork and met with onc today. He was planning on me stopping Xeloda after 6 round. He always said 6 to 8 rounds. I said I want to do the 8 as long as I am handling it.

Talked about what else I can do plant based diet, exercise and very little alcohol. He wants to me focus on Xeloda now but set up some survivorship appointments like nutrition to help me get on the right path. Its feeling strange, seeing the light at the end of the tunnel.