Tykerb w/Herceptin while in remission dilema

Sherryg683 · 12-28-2006, 11:56 PM

I was talking with my Oncologist today and he said he thinks Tykerb will be approved by the end of the month, I read Christina's post about it being in February. I have read in "Cure" magazine about Tykerb being used with Herceptin and how they think it would be very effective. I am Stage IV but have been NED for 8 months now, I take Herceptin weekly pretty much till it quits working. My dilema is I am really wanting to get on Tykerb with HErceptin to help prevent reoccurance. But I am also wondering about should I save Tykerb for the day (if and when) Herceptin does quit working for me. I wouldn't want to form an early immunity to it, does this make sense? Is anyone else here in the same situation as me and have you discussed this with your Oncologist and if so, what did they say. I asked my Oncologist if he thought it would be beneficial to me to get on both and he said he really didn't know the answer to that..he's pretty honest He has brought up both points that I made. I really like the idea of Tykerb crossing the BBB and protecting the brain. I also think that if the combination of both will keep me disease free for more years, there may be something else that will be developed in the meantime... What are your opinions on the subject and what are you gals planning on doing? ..sherryg683

jhandley · 12-29-2006, 01:59 AM

Hi Sherry
I have been on herceptin and in remission for 15 months.. I would like to go onto Tykerb as well when it eventually becomes available. I think both are better and then if further problems arise there may be other options available as time goes on.

Cheers
Jackie

Mary Anne in TX · 12-29-2006, 08:50 AM

I'd like to do the same thing you're talking about!

Seems like prevention is better than fix it!
What I've read on line indicates that they really don't know the answer.

KellyA · 12-29-2006, 09:14 AM

My oncologist and I have been talking about the same thing. I am a stage 2b, but really want to do whatever I can to prevent recurrance (sp?). He is willing to give it to me off label. I have similar questions- 1. can it be taken with Herceptin safely, as I will only be 1/2 way through my "year" of Herceptin and 2. I am afraid of using it now and then it not being effective later if I need it.
I really like the fact that it crosses the BBB and might give me some added protection.

Love, Kelly

JerseyGirl · 12-29-2006, 03:50 PM

Sherry, I'm in the same boat. I'm stage IV, been NED for only 4 months, but am already thinking about Tykerb; I'm on Herceptin indefinitely. My personal opinion is the more protection the better and I haven't heard about too many side effects on Tykerb, except some women have terrible diaherra (sp?). Not sure of the percentage that are affected. I'll ask my onc about it at my next appt on the 8th. My feeling is he'll want to save it for if the Herceptin ever stops working. I'll let you know what he says.
Julie

Adriana Mangus · 12-29-2006, 04:29 PM

Hi Sherry: My onc. won't put me on Tykerb. Reason: I'm a first line chemo patient. He feels that I should try everything that's available for me before trying the "latest" discoveries. In short, he said that we don't start from the end; rather from the beginning, does it make any sense to you? I will be seeing him Jan. 9, am planning on asking him again about the above combo. I'll keep you posted...

CLTann · 12-29-2006, 05:06 PM

Andriana:

Your onc's explanation does not make scientific sense. If he is correct, then all treatments must go back to the primitive time, including those voodoo superstitions, for all ailments. When new effective medicines are available, we should take advantage of the discovery and go with them. Find another doctor and compare their advices. Although my situation is totally different from yours, I just want to point out the logic behind these advices.

Sherryg683 · 12-29-2006, 08:29 PM

That was sort of what I was wondering about, if I take Tykerb while I am in remission, would I develope a resistance to it, if I may ever need it later. But then again, I am hoping to stay in remission and not need it later..and I figure the Tykerb would help there. I was on Taxotere, Xeloda and Herceptin for 4 months and after about 6 weeks on those drugs my lung mets were gone, so I know we could always go back to that. Then again, I am so worried about brain mets and if Tykerb helps protect against that, then I can't see not taking advantage of that. I figure the way things are going, they are sure to develop new drugs in the near future that might even be better. I just remember reading that article in "Cure" that I spoke of and it saying how they think Tykerb with Herceptin would be the one/two knockout that may be needed for HER2+. Since one attacks the outside of the cell and the other attacks the inside. I think I am going to get on it as soon as it's available and stay on the Herceptin also. My Oncologist will do whatever I want. I read someone saying they were going to get on Tykerb "off label". What exactly does that mean? If it is approved by February would you still need to get it off label? My Oncologist told me that he has several women who are on Tykerb right now and all of them have been responding to it, he said it was amazing what he has seen. He said the only side effect that he has seen so far is that it makes the biliruben (sp?) in the blood go higher, but the patients haven't noticed anything. ..sherryg683

Vanessa · 12-29-2006, 10:33 PM

The last time I talked with my doctor, she is of the opinion to stay on the same treatment until you become resistant and then go from there, so I have a feeling she will save Tykerb for later. There is a possibility she will change her mind about that as new information becomes available. However, I am thinking I don't want to exhaust my possibilities early on. I am kind of confused about that, also. I am glad to know that Tykerb is having amazing results!

Adriana Mangus · 12-30-2006, 08:56 PM

I don't know what to do know? Seems life half of the respondents are inclined to stay on the drug that's currently working for you, then wait until resistance becames apparent> Then what's next Tykerb? or another drug, I have metastasis to rt lung, navelbine + herceptin did the work for 3 1/2 years, will begin xeloda next month. After I develop resistance to this combo, should I start Tykerb? Another drug? So many questions....?? I will definitely ask my onc. next month, am also inclined to see someone else and compare opinions. What do you think?

Adriana Mangus · 01-08-2007, 04:25 PM

HI Vanessa: Hope all's well with you. Congratulations on you NED!!! Awesome!!!. It's incredible what these new drugs con do for us. Stay positive..How long ago did you have bc. WHen did it metastasized. I have mets to rt lung. I have been so apprehensive, do not know what to do; if start tykerb when available or try other drugs until I became resistant to those drugs...Any advice? Thank you.

Hopeful · 01-08-2007, 05:55 PM

KellyA,

I am of a similar mind as you. I am stage 1, ER+/PR+, currently on Heceptin + Arimidex. Since none of us stage I-III patients can tell if Herceptin is working for us if we are NED, I am concerned that I may fall in the "doesn't work" category, and don't want to wait to be Stage IV to find out. Also, I am concerned that the combination of the AI and Herceptin is not adequate to block all the "cross talk" pathways there may be, and that the cancer may become adapted to very low levels of estrogen and begin to grow again. In the current Breast Cancer Update, Dr. Chang discusses a laboratory experiment that combined Herceptin, Tykerb and an AI, which killed 100% of the cancer cells. It seems that most of the discussion of the primary value of this drug for early stagers will be as another synergistic combination with Herceptin, rather than in lieu of. I am going to continue to discuss this option with my onc when I see him for Herceptin treatments.

Hopeful

michele u · 01-08-2007, 06:35 PM

all,

this is my opinion only of course, but to all that is stage 4, fight like he_ to get Tykerb. Technology is changing all the time. This oral medication is getting FDA approved for a reason, it must be getting good results. My opinion is that if you get Herceptin and Tykerb, it's a double whammy on the cancer. I don't think the body will get resistant to this, in that our bodies get "resistant" to say an antibiotic. I'm stage 3 and my onc already said i can get it off label if i want. I want to do everything in my power NOW and not later. Tykerb might prevent brain mets. In just that i think we all should look very carefully at getting it. I think some of the trials are giving Herceptin and Tykerb together. I think in the near future HEr2 positive breast cancer might the first type of Breast Cancer to be curable.It has to happen sometime, why not now!!

Christine · 01-08-2007, 07:41 PM

Sherry and all Members....
I can understand your delema. I recently came off Herceptin for rhe last 4 months. I have been NED for almost 6 yearstaking Herceptin has never been a problem for me, except, I began to think maybe I need a break, especially after having fair to normal ECHO's at 50% sometimes then later 66% after not taking Herceptin for 4 months.
My onc really listens to my own ideas on how to persue my treatments. Iam scheduled for my usual 6 months MRI Scans that will help me and my Onc determine my protocol. To begin Herceptin or not is the question.. Tykerb seems to be a great alternative, but on the other hand do I need it? Herceptin has always worked well for me; and I would like to be off to give my heart a break also. A recent echo-stress test showed a slight dysfunction was indicated less volume pumped. Otherwise, my heart had a normal function and size. MY heart Ejection Fraction was normal at 66. Cardiologist was impressed.
At San Antonio this year, it was noted that the dysfunction in the LV takrs longer to rebound than they had previously thought for some.
Hope this helps all who have similar heart issues to go on or take a break.Tykerb seems to be another option for those who are progressing on Herceptin;and those who have brain metastases.

Hugs
Christine

julierene · 01-09-2007, 09:57 PM

I have wondered the same thing. I have been NED (we think) since Mar 2006. I want to try it just to see if it will do anything to that one last peice in my liver. They say they think it's necrosis... but I sure am curious. I am of the opinion that you should go for it. My past history has been of me begging for stuff and not getting it. So this time, I think I might shop around for a new Onc if he says no. In the past, I was asking for things that really weren't approved yet. So I might wait till it's approved - then do my homework, present him with my stuff, and let him decide. If he still says no, then I will probably shop for a new Oncologist. As much as I love him, I have disagreed with his conservative approach from the begining. I can't stop wondering if I had the Herceptin when he finally let me have the Taxotere - if I would have never had another occurrance. I also wonder if I should have had radiation too... I have never regretted taking anything extra. I have always regretted not taking what I really wanted to take. He was right about Herceptin and my heart... but we got it under control with Lisinopril. So his argument was pretty much invalid. What more do I have to loose? I'm already Stage 4! I already have that weight on my shoulders that IF I had pressed harder to get those drugs it might have made a difference. I don't want to be wondering things like that ever again.