I have had a bad reaction to Xeloda. After the 2nd day I couldn't control my tongue and it kept pushing out of my mouth. Really awful. My tongue felt swollen. I ended up in emergency at the hospital. After blood tests and a ct scan it was determined it was either a mini stroke or an alllergic reaction.
It took 72 hours for the reaction to stop. So on to the next medicine. Have to find out what the ingredients are in Xeloda and hopefully find something better.
Cheers, June S.
Thanks so much Sandra. Good info. I am still getting back on my feet and nothing happens over the weekend anyhow. Tomorrow I will have a talk to my oncologist and see what she says. I am hoping there is another med out there that wouldn't disagree with me so badly.
That was a terrible experience and spending 7 hours in emerg didn't help. And sometimes it can be longer. The doctor that looked after me wasn't conclusive about a TIA or allergy but I would say because of the way I have recovered it was an allergic reaction. Also, I haven't had to take any serious drugs in my life so my system is pretty bland. I don't take any blood thinners. In fact I did have a bad reaction to a drug I was put on when I was first diagosed with Cancer. I was sick for six weeks because no one could figure out why I was so sick. Just felt awful and couldn't eat. My go to second opionion oncologist figured it out and put in hospital for two days on an iv. of gravol. Did the trick. Electolytes were out of order.
Just had my first good dinner today and feel like a gravol might be a good idea. None of the other meds I have been on have bothered me at all.
Cheers, June S.
Just to add, the tests at the hospital came back normal. Blood, head cat scan, etc. so I think it is a good bet that it was alllergic reaction. The doctor did say maybe a small stroke or Allergic reaction.
Cheers, June S.
June, I’m so sorry to hear this. Thanks for sharing your experience. I hope you get back to feeling well very quickly.
Thanks so much. Part of what got me through was this support group. I appreciate the support a lot.
Cheers, June S.
I’m sorry to hear this. It must have been very scary! With your tongue swelling, it must have been difficult to talk and explain. I hope you had someone reliably helpful with you.
Thanks. It was scary and very uncomfortable. I was alone in emerg as they only want necessary people in the hospital but I did manage. I am wondering if anyone else has had a reaction like mine. I am so happy to feel better now. I am pretty well 100% back but it took several days. I took four doses of Xeloda over two days. Wednesday morning last week it hit me.
Cheers, June S.
I had a reaction before I went on Xeloda where my calcium levels went to high but I’ve had nothing from being on it. I ended up in the hospital but they allowed one visitor per day. It was a good thing since my reaction was a dementia type reaction do I couldn’t really pull my mind together to tell anyone what was going on. It too was scary so I sympathize greatly. Elaine
Just so scary! Cannot imagine. Here's to a new safe solution!
Thanks. I hope the next one is better. I have an appt. with oncologist on Thursday to go over solutions.
Cheers, June S.
That sounds like a very scary experience June . Good thing you went to emergency department . It is certainly a mystery to how our bodies are going to react to the treatment drugs , and the if and when a reaction might happen . I hope the next treatment is effective and more manageable.
Luann
Hi Luann: Well, I am thinking I am one the odd ones out. A lot of people are taking Xeloda and have no problems.
Cheers, June S.
I'm so sorry, good luck, hope you identify the cause.
June,
I hope that awful reaction is in your rear view mirror!
Best,
Colleen
Thanks Colleen. Yes it is left now, thank heavens. Oncologist calling on Thursday to discuss options, if any.
Cheers, June S.
Yes, I will Sandra. I am wondering what they will come up with. Hope it's a good one!
Cheers, June S.
Hi Sandra; Well, my appointment was disappointing as usual. For the first time in the one and half years I have been seeing this oncologist she did a' half baked' physical exam. Not sure what prompted that. In any case, she has prescribed Exemestane and Everolimus. She wasn't able to clearly state what the ingredients are and the difference between these and the Xeloda. Simply went over the side effects which don't sound to nice. Especially the idea of mouth sores and having to use a mouth wash several times a day. I was using a home made one with Xeloda but that obviously didn't work. I wondered if there was a correlation between the mouth sores side effect and the tongue problem I had. Are you familiar with these two new ones? Hope I get the results of my bone scan tomorrow.
Cheers, June S.
You were really wise to go to the ER! And an allergic reaction is certainly better than a stroke, even a mini stroke! I don't remember your treatment history, but I'm a long timer living with mbc and it's been my impression that for many of us, the first chemotherapy used tends to be either Xeloda or one of the Taxanes. My thought has been that we don't have much wiggle room in terms of our health and so my "rule" for myself that if I even think of going to the ER, I go and if I even think of calling my onc, I call. I don't think that alone has kept me going all these years (17 on 3/1) but it has helped me avoid some trouble I could have headed into! I live near a very small town and the intake people at the hospital and the cancer clinic people all recognize me and several of the ER people do, too! lol Covid has sure added a layer of complexity! Glad you recovered from that reaction--it sounds really scary!
Yes, I agree. If the question arises go to the hospital. I talked to my oncology nurse and she said go to emerg! So I called an ambulance as my husband isn't driving and I couldn't have driven myself. It was the right thing to do as my blood pressure was way up. Unusual for me.
Cheers, June S.
So sorry! That is awful...I hope you are starting to feel more normal now! Thank heavens that there are more options....let us know what happens!
I am beginning to feel normal again. Thanks. I am a little aprehensive about how to move forward but I will have a call from my Oncologist on Thursday to talk about it. I just wish I trusted her more. She is the young inexperienced one, who keeps messing up.
Cheers, June S.
Hi June. Would it be a good idea to report your reaction to the manufacturer? They may not have come across this allergic reaction before. Hope you are totally well now.
Yes, I will be in touch with the 3 support ladies who were following my progress. I had a number to call if I had any problems. I will let you know what they say. Thanks for the good wish. I am 99% there. Just a shock to my nervous system. So I still feel slightly off but I am sure it will be better when I get to talk to my oncologist.
Cheers, June S.
Hi Sandra: Had you any thoughts on the new prescriptions? I realize you are feeling very fatiqued these days and so if you don't feel like answering right now I will understand.
Cheers, June S.
Oh Sandra thanks so much for all that great info. The only worry is the mouth issue and she is prescribing a mouthwash. Hopefully it will be effective. I sure don't want to repeat last week's episode. She is of course scared now, and is only prescribing 2.5mgs. Go figure! Mind you, I am worried also.
My bone scan report was a little disturbing in that I have what appears to be new fractures. I will try and send the report to you in an email or here. I just got it now so have to read it more carefully. The final interpretation isn't bad though.
Interpretation: Widespread bony metastases are noted, the majority of which have remained stable. There is extensive metastases are disease involving the left hemipelvis with pathological fractures involving the left iliac wing, left acetabulum, and the pubic rami bilaterally.
Most of this was reported in earlier scans. I have to get out my previous scans and compare. Maybe tomorrow. Only thing I have noticed is an increase in soreness in my tail bone. Voltaren helps with that plus my pain meds. I am happy I am still upright!
Cheers, June S.
Hi Sandra; Just wondering if taking the Everolimus with a coating of peanut butter or even inside a piece of bread and butter would get it through the mouth/oesophagus better and without leaving traces. I wouldn't have a problem swallowing something that soft. My husband has trouble swallowing so he takes his medicine with yogurt. Too bad I don't like yogurt or plain milk products. I don't mind puddings. That might be an answer.
Although my instructions say with a fat free meal. I think they mean not roast beef and gravy. Did you mean to say fat free in your suggestions? Yours says fat food source.
Cheers, June S.
Thanks for the routing Sandra, I need that at the moment. Right about the peanut butter. I hadn't thought about that aspect. Good tip also about not eating or drinking for 1 hr. Makes sense. Gives the mouthwash time to work. I don't have the prescribed mouthwash yet. My oncologist thought the prescription was better than the homemade one. I hope it doesn't cost a fortune.
I was also wondering if we had dropped the dosage of Xeloda down to a 1000mgs. if I might have been able to tolerate it and better instructions with the mouthwash.
Do I only need the mouthwash after taking the tablets?
Cheers, June S.
Yes, I get Zometa every three months. I have always been terribly lax about taking calcium because my stomach didn't like it but now I am cracking down on myself and going to take it regularly. Probably a little to late but hey, it should help.
Cheers, June S.
Thank you again Sandra. You are spending a lot of time helping me out here. I do understand that you are acting here on a personal level rather than professional although your years of experience help tremendously. I love nurses. So caring.
Thanks so much, what you wrote makes sense about lowering the dose. Never realized how sensitive the mouth is. I am not into spicy food anyhow so that is ok. I like the idea of keeping some home made mouth wash.
Cheers, June S.
Absolutely! That is why we are all here. To support each other in any way we can. It has been for me a great support that has made this journey so much easier. Everyone feels the same. You make a special contribution here with your knowledge and experience. I am wishing you all the best and hoping something great is coming for all of us.
Cheers, June S.
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