Confused about Tykerb
 

Hi all,
Whenever I am confused I always come here and try to get answers. And thats what I am doing today.
This time the confusion is about Tykerb.

So let me first explain my diagnosis and treatment.
December 2004 found a lump in right breast
Right breast mastectomy: December 2004.
Stage 3C with 12 out od 22 nodes postive. 9cm lump Grade 3, ER+, PR+ (10%), her2+++
4 DD AC, 4DD Taxol
2 years of Herception every 3 weeks (now finished)
Tamoxifen and zoladex started in 2005 when my periods returned

SO I am done with Herceptin now and soon will be switching to AI with zoladex.
Now comes the new drug Tykerb.
My husband does his research and finds that Tykerb is a good medicine and can cross blood brain barrier.
I have 2 oncs, one is at a big cancer research center in Boston and the other is a community oncologist.
What I am confused is that is Tykerb something I should take now or keep it as an ammunition in case I need it at a later time.
If I was to take Tykerb now then would it be with Xeloda or tykerb alone. The community onc said there is no need of xeloda and she would not agree for it.

Is it a good idea to just take tykerb for 3-6 months?

My EF is down to 45-50% right now and is that sufficient to start tykerb?

Does anyone know how cardiotoxic is tykerb?

Please answer, I am all confused.

Dear Rupali,
Yes, lots of people are asking this same question - MicheleU is also Stage III and is in the process of trying to get it (and deal with the insurance issues). In the US, the FDA approval is for Stage IV in combination with Xeloda. So any other use, such as in your case without metastatic disease, would be considered "off label" and therefore a tougher decision and more difficult. But possible as Michele has found out.

Because Tykerb also targets HER2, there is still a concern with cardiac toxicity - maybe not as much but I don't know that there is a lot of data in this regard. I know that part of the qualification for the trial I am going into (Tykerb/Avastin) is, you guessed it, LVEF in normal range. So having an LVEF of 45-50% may put you at risk or preclude you from getting this drug. Might be better to get your heart back up to full strength first.

Also, remember you have had a lot of herceptin - seems like double the normal course of treatment.

It's a tough decision in your situation, I know. My advice would be to get your heart function back up before thinking about hitting it again with the Tykerb.

Is anyone considering taking tykerb just for 3 or 6 months?

I am stage IV in remission for a year and have just been approved by my insurance and oncologist to start tykerb as a preventative approach. I received a phone call from Tykerb Cares and they said that my insurance covered it and I would soon be getting a phone call from a specialty pharmacy. I am not taking xeloda with it. I didn't discuss how long I would be on it with my Oncologist, that was just something I forgot, will discuss that with him this week but I am thinking around 6 months. He was of the opinion that he was not sure of it being beneficial to me at the moment but would do what I wanted. I cornered him on the issue of growing "immune" to it and that was it indeed not true that our bodies do not grow immune to theses chemos but that the cancer finds ways to mutate to get around them. He said this was indeed the case. So my theory was that I would not just get an immunity to tykerb from taking it and that if there was any cancer in my body, I'd just as soon attack it now than wait for it to come back, let it try to mutate around both herceptin and tykerb...seems to me much harder to do. I also am very concerned about protecting my brain or what little of it I have left...lol. It was something I thought long and hard on but am now confortable with my decision. I have to be here for a long time for my little girl so I want to be as agressive with it as possible...sherryg683

Sherry-

I am so glad you're finally getting tykerb - I know you've been pushing for it...

Regards,

I am not sure I agree with the immunity with chemo drugs. Why do we have reactions to the drugs? I had two reactions to carboplatin and was told my body was telling me it has had enough and wants no more. I also got very ill from taking tykerb and my oncologist said your body has had enough and wants no more so, "your done with that drug". I guess, its how do we define immunity. I agree with the cancer being tricky and out doing these drugs. Always, so many questions here and how do you answer them? Glad I am not a doctor! Just my thought here. Wishing you all well. hugs, Sandy

Rupali,

i am stage 3 also. I was dx in 2003. I am in the process of getting Tykerb. My onc wrote my insurance for medical "necessity" They are paying 80% of it. My 20% is still 1,000$ amonth. I'm in contact with some advocacy places to pay for the 20% if you want the numbers i posted them aways back. My look at the whole Tykerb thing is. If one is stage 4, they could wait so when they need it is always there. For us stage 3ers, we are still looking for the "cure". If there is anything out there that will give me any chance of it, i'm going for it. I took one year of Herceptin. I pushed for more and they said no. As Dr. Slamon put it, if we can get to 6 years, we might be cured. I'm going for it!!! I think i'm going to use Tykerb for 3-4 months. I'm just going off the Finland trial where 9 weeks of Herceptin was as good as a year. Hopefully studies will show that 3 months of Tykerb will do the same.