I received the pills today. I will be taking 6 pills a day for one year. I was instructed to take them 1 hour before/after a meal, at the same time each day. Does anyone have any suggestions for a good time to take them? I am planning on before bedtime. Wish me luck!

Joannie

Hi Joanie,

Are these pills 250 mg each. Are you having it with Xeloda or alone.
I thought the recommended dosage was 1250 mg which would mean 5 pills if each pill was 250 mg

Hi Rupali,

For the TEACH trial you take 1500mg (6 pills) once a day and take it alone.

Pat

Well, I have completed 15 days so far of the Tykerb pill. I believe that I have received the "real" thing. I had terrible stomach cramps on day 2 and 3 and by day 4 I had mouth sores, which fortunately, subsided quickly. Feeling fairly well after the initial onset of diarhea, but am not dealing with tingling in the hands and my face and chest is quite broken out with what seems like teenage acne. I have read that diarhea, mouth sores, and tingling are all possible side effects of Tykerb, but I have read nothing about the acne. What is the rash like that can be associated with taking this drug? Has anyone else had this acne like reaction? I never, ever have acne issues, so I'm guessing something is going on. The diarhea comes and goes. I don't have to deal with it on a daily basis. At any rate, I'm greatful to be in this trial.

Joannie

second day on tykerb
 

I just started tykerb for her2 Neu+, Er+ breast cancer that has progressed with a 3cm liver tumor despite treatment with Herceptin, abraxane, xeloda , zometa and faslodex. I was first diagnosed in June 2002 with multiple mets in my liver and bones. I experienced diarrhea with tykerb. I needed 4 imodium tablets. My question does the diarrhea get better with time?

Decided not to participate in Tykerb/Herceptin/Taxol study
 

Just read your reflections on the side effects of Tykerb. I was diagnosed with a 1.3 tumor (encapsulated) on August 1, 2007 and had a double mastectomy on October 4, 2007. The findings were that I had NO lymph node involvement but the tumor was 2.3 by the time they got it but encapsulated.. I had immediate reconstruction (DIEP) on October 4, 2007I and healed for 6 weeks before starting Adriomiacin with Cyclophosphomide chemotherapy from November to the end of January and am now taking weekly Taxol with Herceptin chemotherapy until the end of May. I lost 45 lbs. with the first cylce of Chemotherapy and was just too scared that I would not be able to handle the side effects of the Typerb.

I was given 30 Tykerb tablets, got the first 4 out and just couldn't take them.
This is all still so scary to me and "new" that I still can't believe it's happening.
You both are so brave to take the tykerb; I really admire you. Any advice for a person who is total shock and fear? Thanks for your thoughts and advice.

Bless you both,
SherryG

SherryG:
I too was nervous taking Tykerb. The unknown of what the drug can do is sometimes overwhelming. Since I never received Herceptin, I really was greatful to get the opportunity to try Tykerb. I have to say, for me, I have tolerated it quite well. The diarrhea was the worst side effect. Lasted for 3 months, but not so bad that I even had to take an meds. After 3 months, it has subsided and I only get bouts of diarrhea maybe once every 6 weeks. I think something I eat may set it off. I do get echo cardiograms every 3 months through the trial to monitor my heart. So far, so good. I am on my last three months of Tykerb. My trial will end in April. Compared to standard treatment, this drug has been a piece of cake for me. I pray that this trial will have positive outcome and it can help many women in the future. If you have any other specific questions, please let me know. I have had many side effects, but most were short lived and quite tolerable. Good luck to you and I'm here if you need more info.
Joannie

Thanks for the response Joannie
 

Joannie, Thank you so much for your words of wisdom. I am still trying to deal with the reality of having Her2+ and it's just not getting any better as to how in the world I got this. Anyway, I will pray for your continued good news and experiences with Lapadinib. I decided not to take it or be part of the study; I pray it was the right decision. I will have Taxol and Herceptin infusions each week until the end of April, first week of May and then will have Herceptin infusions every three weeks until February of 2009. Take care...and thanks again.

Hi all - I have been on Tykerb/Xeloda for 11 months. For me it has been tremendously tolerable. I have had the rare bout of diarrhea, (maybe only 4 bouts of 2 days each over the entire 11 months) but never anymore. It was more possible/noticeable when I didn't eat a really clean, smart diet. The junkier my food, the more the chance of diarrhea. The cleaner and more whole and smart my diet is, I have virtually no problem at all! I highly recommend really looking at eating habits as a good start to mitigate diarrhea.

Other than that, I have experienced Tykerb as an amazing cancer fighting tool that is tremendously tolerable! Just more info and real life experience for you to consider as you make decisions...

Hope it helps.

Has anyone with HER2 positive breast cancer not had it return. Does anyone know?

I'm going through 15 months of treatment and just need to see who knows some facts out there rather than hearing from doctors, "If you do everything, you have a 90% chance of it not returning for 10 years." Is that the case with the women you all have been in contact with?
Trying to find answers and peace,
SherryG

Joanie,
I went on the HER2 Sisterhood site and read about the success or limited success of Herceptin with stopping the cancer from re-occurring. I'm really worried this will kill me.
The only reason I didn't take the Tykerb was the worry of the side effects because I've lost so much weight and didn't feel I had any weight to lose before the condition would have been medically serious. How long and how often did you have diarrhea? The acne-like rash...what was that? I'm now thinking the cancer will return no matter what I do. I need your thoughts because you've been taking the Tykerb. Thank you ahead of time for your help.

Trying to find answers,
SherryG

SheryG:
I have been on the TEACH Trial since May of 2007. The diarrhea was pretty constant in the beginning, but never so bad that I had to take any meds to stop it. It was on and off over a 3 month period and has mostly subsided. It flares up from time to time, probably due to something I have eaten. The acne like situation was quite bad in the beginning. My entire face was broken out. I was on the verge of asking for meds to get it to settle down and then it subsided. I have had other minimal side effects, mostly in the beginning but they were all short lived. So far, so good for me on this trial. Compared to the standard treatment of A/C and Taxol, this has been a breeze for me. I have tolerated it well. I too worry about reoccurance, that is why I pursued this trial. I was unable to get Herceptin because it was approved after I completed all of my treatment. I never felt at east not getting the Herceptin. It has been successful for so many. I have gotten some piece of mind taking the Tykerb and feel more at ease that I have done everything I can. I am coming up on five years in April of my diagnosis. In the beginning, I never thought I woud see 5 years, but each year I gain more confidence that mets is not always inevitable. I have learned so very much from this website and I am greatful for all the information available here. If you have any additional questions, please let me know.