Bit of a scar these past 3 weeks with xeloda. 2 cycles first cycle does was too high, second still high. Side effects were brutal red hands and feet as well as stomach pain. I just left the symptoms carry on asked ladies on the board what they did.
I called my Dr when the pains go t too bad and she stopped the pills and put me in the hospital. I go the lecture of letting her know what symptoms and she can tell me what to do, not other people. In the end 2 night stay at the hospital with our lovely magnificent nursing team. Inflamed small intestine.
The great news of all of this is in 2 mths my liver leisions shrunk 1.3 cm now that is pretty good. So these are the meds for me. Wait 3 weeks for the side effects. Then back on at a lower dose.this is one happy girl!!
Deb 😇🙏❤
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I am glad the treatment is working for you but I wish it was not so hard on you . Do they think the Xeloda caused the small intestine inflammation , Or is it unrelated ? Luann
It was too much of a does. I hadn't been really good at telling her side effects were rough. I was just rolling along being tough. So if I would have mentioned sooner it wouldn't have gotten so bad 😭. So now my body has to clear out the meds and start again a much lower dose and really keep an eye on the side effects. It's like an overdose really.
I am happy though that this drug is working for me...at a good does. Nice to see the liver tumours are finally responding to SOMETHING !!
Don’t beat yourself up too much , sometimes even when mentioning side effects I find they are not always listened to and can be dismissed quickly . We are all doing our best and it sounds like you are on the right path . No more tough girl for you! 💪🏻
For what it's worth, I read somewhere that Xeloda side effects indicate it's working. Not sure if that is true but... (I type this with very sore hands myself!)
Wow I'm good with side effects as long as they are manageable. This is the Dr first choice success rate is 89%. So going with I will be on this one fo a long time.
No other cancer so just zemeta injections every 3 mths, letrozole and xeloda. Waiting for the cure 🙏
Deb
That’s fantastic news. Sorry to hear you had such awful symptoms at first.I’m on my 3rd cycle now. My week off gave me great relief from sore hands and feet. It is starting again though. Had my CT scan today and I see my Oncologist 17th. I think he will reduce my dosage as this soreness is painful.Wishing you all the best
That is what I am learning. This works but the side effects are real. If you have side effects hurting you that is not a something to just not pay attention. That's what I did.
Loved the title to your post. It is exactly what I am finding out too. During my third cycle of Xeloda I was doing pretty well on the hand foot thing. But my mouth became sore, which I assumed was just one of the expected side effects. But it got worse and worse until I could only drink smoothies and even then it continued to be very painful, spreading to my throat.
At my regular blood test, the nurse took one look at me and said I'm getting the doctor to see you right away. Long story short, I had a severe case of oral thrush. Loads of pills and mouthwashes prescribed and I did recover over the next week. Cycle delayed by a week and dosage reduced from 3300mg to 2600mg a day. So, lesson learned. Do not hesitate to mention anything concerning to your medical team!!
I am off Xeloda. The medication comes out your hands and feet. I used Udder cream and it worked well. I am now on Piqray and don’t have that issue. My friend is a dentist and recommended Magic Mouth. I just picked it up. Haven’t tried it yet.
Xeloda made me angry. Piqray doesn’t do that. I have 27.29 cancer. On Piqray the cancer in the lining of my stomach is in remission. Go girl! Keep it real! Complain, don’t push through it. Reenie
I know the appetite, I just went through it. I went from 163 to 151, I am 5'9. I was ok with the weight loss, but not that quick.
Have you tried eating small meals a day. That works for me. I have been eating tomato veggie soup, eggs and toast, squash soup, apple sauce and yogurt. Nothing that fills you up.
Hi Deb ! So good to hear from you and thanks for the suggestions! I too am 5’9. I had some weight to lose but I’m dangerously low now at 137 pounds. Part of this is lack of appetite on Piqray , the other is pain from wearing a wound vac while waiting for the botched mastectomy wound to heal where I can put a new flap on. That said, I love Piqray for the effects in kicking cancers butt ! I also belong to the Piqray Facebook support group. Wonderful ladies there as well.
Who would have thought I’d ever hear the words “You need to gain weight Julia” !
So my onc has me on Maritrol which is a synthetic marijuana drug ( you can’t taste the ‘pot’) that does make me hungry, I’m starting eat small meals throughout the day - or I should say snacks. Cramming down ensure and experiment with other protein drinks like premier protein , I’m also gobbling almonds, lots of Keto snacks that I buy on Amazon - some are really yummy and low carb low sugar.
I’ve learned Keto is the best diet when you’re on Piqray . You can google Piqray and Keto. However I don’t need to lose weight ! So I amp up the protein and healthy fats. My goal is to get back to 150.
For now, even my daughter is like “Um mom, you look like you’re wearing Stick Figure Fashions!” I used to be - back in the day - an ex Olympic caliber swimmer and have lost a ton of muscle. So sagging skin around the thighs - gross. I’m 58 and am trying to get muscle mass back but as long as I have to wear this wound vac (hopefully not longer than a month) I can’t exercise or take long long walks as it’s painful as duck !
Loved hearing from you Deb. Blessings from Scottsdale AZ
I say whatever works to get you eating again!!! My Mom's friend uses a marijuana to increase her appetite as well, from her Dr. Whatever works to get the body back to healthy and strong to fight !!!My choice is walking but the past 3 weeks my body has definitely taken a beating. Just easy on yourself and do only what we can 😁
So that is the sagging skin? I keep losing weight, I am okay with it, could lose a few more without being emaciated, just not why or how I am losing weight. I think I have stretch marks on my sides, and my arms and legs are thin, but saggy. That was my fear -- losing muscle mass. Not weaker yet (I do strength training) but that has to come. Amazing to me that my vanity competes with my concern about cancer!
I definitely have saggy skin in my thighs . Lost muscle mass. I hope when I get the wound vac off and the flap done, I can exercise more. Piqray kills my appetite and I’m going to request my onc to reduce the dosage
I am waiting for my onco to call me within an hour (nothing like waiting until the last minute). I see that the lesion on my liver has increased significantly (significantly being the word used on my CT scan report.) I had the CT scan on Tuesday and yesterday the results were on my patient portal.
When the first lesion was found in February 2022 on my liver, the only thing she offered was intravenous chemo which I did not want to do.
But I see your onco actually prescribed medication for you although the side effects can bad.
May I ask what strength she put you on? I am going to ask her why she did not prescribe me anything new in February so that it got this big. Thanks, if you see this.
HiMy liver has been my on going issue. I leisions on 2 spots on my bones ibrance took care of that, but nothing on the liver. Tried fulvestrant same doing nothing for my liver. It had grown to close to 9 cm. I had a biopsy just to make sure it didn't become another type of breast cancer. Happy it didn't still her2-erpr.
I had never gone through chemo, I went right to letrozol and ibrance.
I have to do a chemo know to kick this tumor into gear to heal.
I am happy with xeloda, as the ct scan showed more than 1 cm tumor reduction.
HoweverI started at a high does and had the sore hands and feet. They were ok enough to get to the 2nd cycle. Unfortunately the side effects got worse. Hands got worse now I am dealing with inflamed small intestine.
So we are going to wait about 3 weeks to heal and then start off a a bit of a lower dose. The break shouldn't hinder anything as I was on an over dose so it will be in my system for a bit.
I like the drug, I don't like the side effects.but that was a bit my fault, I should have told my onocologyst that the side effects were becoming brutal.she said I should have gone to emergency.
Next time around I will be right on it. This is a turtle race not the hare race. Slow and steady 😁.
I took 3 mths sick time to really focus on me and being healthy. This took a toll on me, not going to lie. But our bodies do bounce back.
Note: my onocologyst is my god send!!! She is amazing. If things are working after 3 cycles of meds, she will switch me. This last one is harsh, but she needed to something FAST !!! I am so happy this med is working, I haven't seen her this excited with these past results ever lol. So we are on the right track!!!
I'm so glad you are feeling better and that this new med is working well for you. Thank you for sharing your experience. It's a good reminder for us to share any/all side effects immediately with our onc.
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