Xeloda and TNBC
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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.
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Hi SoniaL & Hanging_In,
Thank you so much for the Keytruda tip. I looked it up and it seems they are using it frequently (in trials I suppose) in Germany. On first glance I think they are getting good results. I am headed to Heidelberg to see a TNBC specialist - to ask about Xeloda, Keytruda etc. for folks who had residual disease after chemo. I really appreciate it and will report back!
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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.
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Unstoppable and Hanging In There...thanks for the advice about not walking a lot, even if you're not having HFS symptoms. I finished Cycle 4 on Saturday and so far have not had any hand/foot issues. I normally walk for exercise, but have done so little over the last year - between feeling awful last summer on chemo then a BMX in October, followed by skin complications that required two unplanned surgeries this spring, I just haven't been up for much exercise. But last week I decided I had to get moving because I was so fatigued. I've been riding on a spin bike, thinking it won't be as hard on my feet since there's no movement and friction. I'm starting with super short rides because I am SO out of shape so hopefully it won't be too hard on my feet.
AlabamaAustria, look forward to hearing what you find out and hopefully they can get you on the Keytruda trial. I'm an Alabama native by the way (Roll Tide!). I've been in Charlotte NC over 25 years, but Alabama will always be home.
Jennifer522, welcome although I'm sorry you did not get a PCR. I hope the Xeloda will not be bad for you. I'm halfway through and so far have tolerated it well.
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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
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prettybarracuda430, welcome to BC.org and thank you for posting! We hope you'll find Breastcancer.org to be a very helpful, informative and caring place.
Kind wishes,
The Mods
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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
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Hi rdeesides,
I take 4,000 mg daily so I'm not far off from what you will be taking. I thought I was only doing 6 rounds but my doctor told me yesterday that I will be doing 8. I guess I misunderstood him before. I started my 4th round yesterday. So far side effects haven't been bad I only get a little fatigued for a couple days. Good luck
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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
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Good luck rdeesides...hope you do well on the Xeloda. I haven't had any problems but still keep my nausea and diarrhea meds in my bag at all times, just in case!
kmajor, sounds like you are right behind me - I just finished round 4. I have also found fatigue to be the only side effect so far, fingers crossed that it will stay that way!
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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
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You can calculate your square meter body mass here at this link. I believe it is height in cm time weight in kg.
Mine is 1.8
Your husband sounds like mine. He is not eager for me to start this chemo. Hopefully we won't see a huge difference like we did with IV chemo. The doctor can always dose down if we have lots of issues.
Rebekah
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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.
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Sam0623,
Yay for finishing treatment. I am only just nearing the end of round 1 and feeling great! No issues whatsoever.
Good luck to everyone.
R
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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.
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So, I finally got some hand/foot syndrome over the weekend, which was halfway into my 2nd cycle. I am fortunate in that I work from home and I have a desk job, so I literally can walk under 1k steps a day pretty easily if I want to. I have found that the 40% urea cream is very soothing (bought it on Amazon) and I am also icing my feet once a day.
For those that are further on than me, did you find that symptoms got increasingly worse? Or once they kicked in did they stay about the same? I can manage at the place I am now, but if it gets much worse I will need a dose reduction.
Thanks!
R
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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
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Sonia,
Thank you for responding! My feet are a bit red, but not peeling at all. In fact, since I have been so diligent with the urea cream, I think they are in better shape than when I started. I feel like I'm walking on gravel though. I too need to walk for exercise but I'm trying to be super strict with my food intake and just tell myself that I need to just hang in a few months and then I can walk again.
You are getting close to being done, right? 8 cycles? You can do it!
Rebekah
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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.
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Does anyone else struggle at about day 10 with not being hungry? I am cycle two and on both cycles at about day 10 I lose my appetite. It's not that I am nauseous, I am just not hungry and the thought of eating something and then swallowing 5 pills with 8 oz of water is just difficult. Today I couldn't work up an appetite until 11:00 am. I am keeping my eye on the prize, but it's still a struggle.
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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.
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i started with tender feet 5 days into cycle 2 and just not hungry with intestinal issues on day 9. Thinking I might ask for a step down on the next visit to the oncologist. I'm 150 lbs and on 4500 mg a day. From what I can tell from the calculators, the dose might be a little high.
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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!
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Sonia L - Congratulations! You are so close!
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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!
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Congrats on being done Sonia!
I am on second week of round 4. I think about what I will do to celebrate being done in October. I thought about going to Cheesecake Factory and having my favorite lemon cheesecake but by then I probably won't be able to walk from the parking lot into the restaurant!
I do have foot syndrome and fatigue. I manage but the feet issues have slowly been getting worse with each cycle. Not enough for me to ask for a dose reduction. I want to get on a exercise schedule, was thinking of seeing if my Y has the livestrong program but afraid to exercise while on Xeloda with feet issues.
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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?
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Jennifer...I exercised very little during my Xeloda. Someone on this board had suggested limiting walking as much as possible to help prevent the hand/foot syndrome. I'm sorry that you're experiencing that. I did ride a stationary bike a little during my Xeloda...maybe try that since your foot basically stays immobile once it's in the pedal cage. And I know some gyms have the machine that is basically a bike that you pedal with your arms. That gets your heart rate up quickly! I just started back walking this past week. I'm terribly out of shape! And I love the lemon cheesecake at Cheesecake Factory...you should definitely get some to celebrate!
Kmajor...yay, you're almost done too. I had 30 radiation treatments. The treatments themselves are really not bad. I did fine during the treatments. Unfortunately afterwards, the radiation damaged my expander and it had to be removed (I'm having DIEP Flap reconstruction in August), but looks like you do not have expanders so maybe you won't have too much tissue damage. Good luck!
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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.
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has anyone tried cannabis rub for the gravelly foot feeling? I am on day 13 of cycle three and my hands and feet are taking a beating. Dose reduction to 3500 mg has helped with the gastro issues, but hand and foot is here with a venegence. I'm currently using 40% Urea, Burt's Bee's Coconut foot cream, Sympathy for the Skin (from Lush) and a few other assorted products.
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