Tykerb info from my Doctor!

[Sandy H]

I thought I would share this little bit of encouraging info for you. I saw my oncologist yesterday here in Destin. He is just so sweet and caring. He told me that Tykerb is an easy drug to take they are not seeing the side effects with the heart that they are with Herceptin. I asked about taking it with Herceptin, as I know there are trials doing it, and he made a funny face and said, "boy, I don't know mixing it with Herceptin?" He said Avastin yes, but Herceptin he would have to think on it. I know it was posted that there were more or worse side effects with the heart on Tykerb. Less side effects sounded good to me and coming from a doctor made it worth while to post. hugs, Sandy

[Sherryg683]

My Oncologist had told me the same thing about it being less damaging to the heart, quite a bit less he said. He has quite a few patients on the trial. I don't think he knows either about mixing Herceptin and Tykerb. He said he might take me off Herceptin and put me on Tykerb if I was so worried about the brain mets issue. I said, put me on both..change my Herceptin to every 3 weeks..he said he would have to think about it. I just have that "Cure" magazine sitting here in my house that said what wonders they thought Herceptin and Tykerb would do when used together. One attacking the outside, the other the inside of the cell. Maybe they didn't consider the toxicity of it. I guess I have been pretty hell bent on getting on both since I read about it in there and when I get hellbent, there's no stopping me. I guess we'll have to see. If Herceptin continues to work for me, I don't want to get off it..I just want a little protection for my brain, it's scattered enough...sherryg683

[heblaj01]

Two oncs who are likely to be best informed on the Herceptin/Tykerb combo are
Lisa Carey, MD and Jenny C Chang, MD:they were involved (& may still be) in the trials.
You can listen to some of their very encouraging comments following the SABCS in dec 2006 at:
http://www.breastcancerupdate.com/do...8_06_Chang.mp3

[Sherryg683]

Wow, great link there. They are saying there is great reason to use Tykerb and Herceptin together, blocking both pathways showed full response. I am going to let my oncologist listen to this monday, or at least give him the link. Pretty much what was stated in the "Cure" article I read..sherryg683

[anant]

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[Sandy H]

I remember listening to this presentation in San Antonio but had forgotten about it. There was a lot of talk about combining the two. I think my oncologist was looking into using this for my next treatment. Perhaps, it has more to do with some people that weren't able to tolerate Herceptin. There will always be a few that will not be able to use certain combos. My point in posting was what the doctor said to me about the side effects, were not being seen with Tykerb, that were seen with the Herceptin. I think lots of people will benefit from this combo and expect I will be on it one of these days. hugs, Sandy

[Carolyns]

Thanks for sharing the link and tape. It is very encouraging.

April to June 06 - I was in a trial with Femara (for sure) and Lapatinib (50 / 50 chance). Within a few weeks the skin mets were gone, my markers went down and the visible lumps on my chest were gone. We took this as an excellent response. Upon scanning 3 months later while I had an excellent response in the chest-wall and skin, it was discovered that I had 7 tiny spots on my liver. We switched immediately to Gemzar and Herceptin (5 months) and the liver is almost clear (3 tiny spots too small to tell without biopsy) and the rest remains clear. (Maybe Herceptin would have worked alone...who knows?).

About a month ago we switched to Faslodex and Herceptin (Zometa monthly for bone mets). Scans in 2 more months.

We are still waiting to learn if I was on Lapatinib or not. I think that the plan is to add it once approved. For my specific case I feel that my doctor has always seemed to be more interested in the combo of Herceptin and Lapatinib than Lapatinib alone. The early thought and the reason I entered the trial was that I might respond to hormonal alone. The idea was that Laptanib would be an added bonus if I got it.

Background: I am 50 years old. I was first diagnosed in 1989 in my early 30's treated with mastectomy and 6 months CAF. In 1999 (with a 5 month old baby boy) I was found to have breast cancer in the other breast and was treated with a mastectomy, no lymph node involvement and no further treatement. In 2002 I had an elective hysterectomy. March 2006 - Stage 4 - nodes, chest / chest-wall (two lumps above implant), skin and bones. I had never been treated with hormonals.

I will post once I find out for sure if I was on Lapatinib.

Thanks, Carolyns

[rinaina]

I wonder why my doctor said they are starting to find heart side effects with Tykerb too so he is reserving his opinion on it until more is known.

[Sheila]

Rinaina

Mine said the same thing...maybe it is a Chicago Dr. thing...mine is waiting for more info...and she is over several clinical trials, one of the first in the country to use Herceptin, and a professor of oncology...so I will stick with her advice until she hears more. I attended the seminar at the SABCS about the concommittent use of Tykerb and Herceptin, one to attack the outside of the cell , and one to attack the inside...it made sense, but still alot of unanswered questions on who it will work on and side effects that are yet to be determined...but it seems that way with any drug!.

[Sherryg683]

You know, I think that use of Tykerb is just too new, even with the trials to know exactly what the side effects are for sure. I think that's why you're going to get conflicting opinions from different Doctors..they just don't know for sure. It's gonna take some time. . ...sherryg683

[Sheila]

Sherry

I agree 100%...just like in everything else, each Dr. has his/her own opinion...thats exactly why many of us seek more than 1 opinion before deciding on treatment.