Thinking of stopping Tykerb
 

I want all of your opinions....a brief history for those that don't know my story..dx 2003 with stage 3b 35pos nodes Her2pos er/pr neg. Did Herceptin for ayear and a breast cancer vaccine in seattle. I'm 4 years out now. I talked by onc into giving me Tykerb off label this year. I fought my insurance company and won. I've been on it for about 3-4 months. I only take it during the week and give myself a break on the weekends due to diarrhea. Lately i've been having alot of stomach pains and diarrhea with it. I'm going for a ultrasound this week due to pelvic pain. I think it's the Tykerb. Well, my dilema is that part of me wants to stop it and part of me is scared to. I just don't want to stop it not really thinking about because if i recurr, then i will kick myself. My family wants me to stop it. I feel so much better off it. What are your thoughts????

Well, you are 4 years out and you have managed 3-4 months of Tykerb. How long were you origianlly planning on taking it? You could take it IF you recur. But your odds are good that you won't since you are so far from dx!

These decisions are hard!

Hi Michelle,
I can sympathize with you. During Taxol I got into a very bad time with severe intestinal issues, even being hospitalized 5 days. I found a wonderful gastro Dr. who was able to get the diarrhea and severe abdominal cramps under control with medication, after all tests (CT, endoscopy and colonoscopy) came back negative. But until then life was miserable.

Are you taking prescription medication for the diarrhea or over the counter stuff? I hung in there knowing Taxol had an end, but you don't have that option with Tykerb.

I am down to my last two Herceptin treatments and am wondering if that is enough. You seem to be doing so well with the past Herceptin and the vaccine. Many feel Tykerb is the answer if you reoccur.

I have no answers but if you decide to stay on Tykerb see a gastro Dr. if you aren't already. Be sure they are familar with cancer treatments and the side effects of them.

Good luck,
Donna

How do you know it is the Trykerb?? Have you tired to medicated the side effect??
I took Trykerb for 2 years and finally from the right about of Imudioum to take>>

Just a thought.

Michelle:
I'm on the TEACH trial since May. I believe that I got the real thing vs placebo. I too had diarrhea, but it has since subsided. Most of the side affects that I had in the beginning, have tapered off. Have you tried any anti-diarrhea meds? I know that for me, the Tykerb feels somewhat like a safety net. I never received herceptin and that has always upset me as it has been so effective for so many ladies. If the drug is affecting your quality of life day to day, going off is something to think about. I wondered in the beginning if it was worth all what I was going through. Even though the side affects were nothing like standard chemo, I felt like I was tied to the toilet on many days! I will pray for you and hope that you will know what is best for your situation. It seems that our decision making never ends. I'm thankful everyday for this website and the support that it provides to me and so many other women.

Joannie, how long are you going to take the tykerb in the trial??

Acidophilus & Bifidus
 

Dear Michele -
So sorry you are still bothered by the intestinal stuff. You may have missed a post by my friend Joanna a while back. Here is the link:

http://her2support.org/vbulletin/sho...ht=acidophilus

She called yesterday and gave me a really good report on how well she is doing with the Tykerb and how the Acidophilus with Bifidus really keeps her in control. I hope she will post soon as she will have some tests coming up.

Hope this will help you.

Are you on Tykerb by itself? Or are you taking it with anything else? I would like to suggest three things before you give up. 1) Make sure you are not taking any supplements with Folic Acid in them - and you will find FA in multi-vits and B-complex. FA can seriously worsen the side effects of Tykerb. 2) make sure you area not eating or drinking grapefruit products. 3) Take a close look at your daily diet. Make a concerted effort to eat as clean and really healthy as you possibly can. Fresh foods instead of packaged. No fast food, junk food or sodas. It made the difference for me... I only have a bout of diarrhea one day every month or 6 weeks at the most and I have been on Tykerb/Xeloda for over 6 months.

Michelle:
I'll be on the trial one year.
Joannie

The fine print enclosure that comes with the Tykerb does have a reason or two where a dose reduction is in order. Perhaps that might help if you really want to stay on it?

pattyz

Micheleu,
Are you stage 4? I guess I am wondering why people are doing treatments other than Herceptin when they are not in active disease. Could someone please explane this to me. I know the feeling of being unprotected but I also am leary of the cancer, if it is lurking, to become resistant to medications and then flare up while taking meds. I have not talked to my onc about this so I may be uninformed.
Alice