Well..it's Tykerb and Xeloda - side effects?

[eric]

Caryn and I met with the Onc to learn of the new treatment plan since a small spot reoccured on her liver after 2 years NED and it's Tykerb and Xeloda! Can anyone share side effects of Xeloda? The Onc said very minor but the nurse said there may be some mouth sores and stomach issues including nausea (moreso queaziness), diarreah and cramping. She said that hand and foot issues occur less often.

On a seperate note Caryn and I were very nervous going in, especially when we were told that she wasn't getting herceptin, as I don't subscribe to the belief that herceptin can no longer be used. Happily he didn't say that. What he said instead was that she should be a perfect fit for Tykerb! I know it's early and some docs aren't on the bandwagon yet, but he had me believing that this should get her back to NED. I pray he's right and that it's for a LONG time.

Hugs,
Eric

[Andi]

Good Luck with the treatments. I have never used Xeloda, so I have nothing to offer you in that regard, but please keep us posted on how things go.

[Karen Weixel]

Tell Caryn, "good luck" with the treatments.

Sending hugs and healing prayers your way.

Karen

[caya]

Eric,

Good luck to Caryn. Caryn is my "real" name - Caya is my family nickname so I use it when I post.
Tykerb seems to be the next magic bullet and I sure hope it is the "one" that will bring your Caryn back to NED - 4 ever.

All the best
Caya

[Sherryg683]

The main side effect for me with Xeloda was the hand/foot syndrome. It occured around the second month of me taking it. My hands and feet looked like I had stepped on a hot stove the day I was told I was NED. The dosage was adjusted for me but I still had pain. Although, I did try to play tennis while on chemo and I don't think the friction on my feet and hands were a good idea. Can't say there were any other real bad side effects that I had..sherryg683

[Lolly]

Eric and Caryn,
I haven't had Tykerb (yet!) but Xeloda was a breeze for me. However, I was on the smallest dose, 500mg 2x's daily. I did respond well, but after a year started progressing again so am now on Gemzar. Sorry to stop Xeloda, as it was the easiest chemo for me.
Hope this duo works wonders for Caryn, will be looking for an update!

<3 Lolly

[Shell]

Eric-

I'm not surprised to hear your onc say this treatment is minor, but I am really surprised to see the side-effects your nurse listed - it is absolutely the H/F syndrome and the diarrhea that are the MAJOR impediments to feeling good on this combo...

I am prone to mouth sores anyway and never had that as a side effect. Moreoever, I was never nauseous or queazy re food at all.

I strongly recommend that you go to the www.xeloda.com site and print out their treatment diary. Because the meds are oral, you don't see the onc as much, and it really gets hard to remember day to day what you were feeling. The best cream that I found was the udderly smooth udder cream, which my local drugstore carried. I also took the b-6, and as I was on xeloda with or w/out tykerb for over 15 months, immodium ad became my good friend as well.

Please be sure to report the onset of any H/F immediately to your onc, as there may be options to reduce the dosage to manage the symptoms. You'll hear differerent mg of the xeloda people take, but remember it is based on body weight/mass, so unless you know their weight, you're comparing apples and oranges. The original dosage I thinkwas 2500mg/m2, but from the archives here you'll see people have done well on less than that....

I was in the clinical trial that led to approval for tykerb, and I wish your wife only the best on it!!!

Good luck w/ things,

[Joy]

I'm so glad you have a plan of action. I think that helps the psyche some. I am also thrilled to hear about your oncs attitude regarding using tykerb and herceptin! I will be anxious to hear how that goes. I had xeloda with taxotere and I could always tell which was the xeloda vs. the taxotere side effects. I also had xeloda 5ish years ago when the dosing was just HIGH and caused problems. Oncs are better about playing with that on an individual basis now. I had hand/foot syndrome pretty continuously and diarrhea for the first 2 weeks-bad too, but again it was a huge dose. I had some mouth sores off and on and definitely that was better with the lower dose. It was quite effective for my huge big liver mets. I think Caryn will do just fine and be able to tolerate it all and get rid of that dumb cancer again!

[MGordon]

If my previous post comes up I am sorry for being repetitive, but my Internet Explorer crashed when I clicked post...

Anyway, if it is any consolation, Lisa tolerated Xeloda better than any other regime she was on, and we used to joke that she tried every letter in the alphabet - at least once!

She never had mouth sore issues with Xeloda, but our previous experience with mouth sores proved to us that Chinese herbs provided the best relief. Lisa did suffer from HFS (hand-foot syndrome) but our onc was willing to adjust dosage levels to overcome side-effects. The real keys to fighting HFS are cleanliness and GOOD lotion. There are several previous posts on good lotions so I wont recap here - just search the posts.

I would recommend you touch base with Sheila - I think she is our #1 Xeloda veteran and she knows how to fight HFS - she might even send Caryn some free flip-flops!

As far as Tykerb, unfortunately Lisa got into the trial too late for us, BUT for the time she was in the trial FOR THE FIRST TIME IN SEVEN YEARS - her tumor markers went down. Not held steady - down. We never saw that on anything else. We hold this deep in our hearts as the bright ray of sunshine for those who can take Tykerb now!

Stay the course. Hold your wife often. Keep us posted constantly.

Love and Light
Mel

[Sheila]

Eric and Caryn

I can't speak for Tykerb as i have not been on it, but I have been on Xeloda off and on for a year. Dosage has alot to do with side effects, and it has been proven that a lower dose of 2500 mg a day in 2 divided doses works just as well as the old 4000mg a day dose. I have never had mouth sores, nausea or diarrhea, but I have had the hand foot thing....my fingers crack and are so sore, and my feet feel like I am walking on hot coals....it seems to have a buildup or cummulative effect the longer you are on it. To combat this, I have found that Ahava hand and foot creams are the only thing that have helped me....and comfy shoes...aka flip flops! Xeloda has been very easy to take for me...the hardest part is REMEMBERING to take it! I have resorted to using the 7 day pill boxes, (2 of them) so I know I have taken my daily dose. I take 1500mg in the a.m. and 1000mg at night. Always take after eating and drink alot of water...Xeloda seems to make me thirsty...I take it 14days on and 7 off. My blood counts have remained within normal range the whole time on this regimen....hope this helps and you find it easy to take as well.

[betlen5]

Eric, I finished my first dose of Xeloda (14 days) and I am also on Tykerb daily. I have not had any problems yet with my hands or feet. However, I have always soaked them and done my own manicures and peticures for years and keep them well moisturized. I coach girls basketball and fast pitch softball so I am constantly in tennis shoes.

The only side effects thus far are sores in my nose, nose bleeds not to often..and breakouts on my face. I will be seeing a dermatologist for this.

My doses are in my signature. I hope that this will keep my cancer at bay for awhile. My Doctor also told me not to get over heated or purspire due to the drugs seeping out of my pores. No walking for long periods, which is a bummer because, I do the Atlanta2Day breast cancer walk every year (35 miles).

Please keep us posted on Caryn's progress.

God Bless and Hugs. Betty

[holly422]

I just finished my first 2 weeks of the Xeloda, today is my first day off of it. I don't like taking the Xeloda at all. I have been very sick for the whole 2 weeks. My stomach aches, lots of diarrea and I have been really tired. I haven't had an appetite either.

[betlen5]

Holly,

I'm so sorry to hear that you are not handeling Xeloda well. What is the disage you are taking? It is my understanding from all the posts I have read here that your Doctor can lower the dosage if you are having a difficult time. When do you see your Onc again? Are you on any other medication?

Please give us more details and information so maybe, we can help you better.

((((((((HUGS))))))))
Betty

[holly422]

Betty, thank you very much for the hugs. I will see my onc. on thursday when I get my Herceptin. I will see if he can lower my dosage, but the last time I asked him if it was too much, he said that I am on this much due to my weight and body mass. I am taking 2,000 mg twice a day. I can actually say that besides the hair loss, I liked the carboplatin and taxotere better than the Xeloda. I have also taken Gemsar, but my counts had always gotten too low while taking that so he took he off. I tell you the truth, I really don't know how much more I can take of this if this is what I'm going to feel like all of the time. I get the Herceptin every week but I do go next week for an echo to see if I can do it every three weeks.

I would also like to thank all of you for your help in everything. This is the best site in the world. I am soo glad that I got up-to-date and broke down and got a computer. I just wish I had it when all of this started 2 years ago.

Holly

[betlen5]

Holly, you are more than welcome...Please keep us informed about your treatment and let us know hoe the onc appointment goes.

God Bless and think positive, that's the key in getting through this

Betty

[Sheila]

Holly

Maybe talk to your onc. about reducing the dose of Xeloda...the new guidelines show that 2500 mg a day are just as effective without all the nasty side effects. That is the dose I am on and the side effects are minimal.

[Esther]

Eric, I was on Xeloda 3 years ago for liver mets, and my dosage was reduced to 2000 mg a day. The hand/foot syndrome was relieved and yet I still saw great results in my liver mets.

So you can adjust the dosage a bit if Caryn is having a hard time side effects. Keep your onc in the loop and play with the dosage as needed.

[eric]

Thanks!

Hugs,
Eric