Brain Mets came back -- Help Needed

[GracePang]

I saw people posted here saying that the Tykerb/Herceptin combo was approved for Stage IV BC sisters. Can anyone give me the approval link/papers/report so that I can fight/convince my oncologist? I am panick now and any information would help.

I feel so devastated today hearing the news that 3 tumors go bigger after my whole brain radiation in July. After wbr, my onc didn't change my drugs (Taxotere/Herceptin) and I had even a 1-month break from Taxotere due to a illness with a flu. In July, I asked my onc to change drugs to Xeloda/Tykerb/Herceptin after WBR, but he refused saying that Taxotere kept my other parts of body (lungs/livers) stable and he would not change until it stopped working. At end of November, my lungs mets slightly progressed; he then agreed to change me to Xeloda in combination with Herceptin (I started 2nd round or Xeloda today -- two weeks off, one week on). Now, just got the news today that the brain mets are back. While my rad onc said he could treated them with Gamma knife (don't know when), I am thinking to add Tykerb to the Xeloda/Herceptin combo. I phoned my onc today and he said (throgh a nurse) that he would not change or add anything now until he see me next time (Jan. 3) and he refuses to add Tykerb. If I insist, he would drop Herceptin and do the Xeloda/Tykerb combo. I don't want to give up Herceptin, and read so many positive stories on this board about Tykerb/Herceptin combo. However, he said he doesn't have data to support this T/H combo, even for Stage IV. Please help me fight with my onc for this combo. Any information/advice are appreciated.

Love,
Grace

[StephN]

Hello Grace -
Very sorry to hear that the WBR did not finish off those brain mets. A number of the ladies here have had to treat small numbers of brain mets with some sort of radio-surgery, and Gamma Knife should put them away for you.

It looks like your onc is one who goes by the book. The FDA has approved Tykerb with Xeloda, however, a study was reported last year at San Antonio on Tykerb and Herceptin in combination. The results showed they do work well together.

You will have to ask him what he has against using Tykerb. That should be a pointed question.

Any place you can get a second opinion if he stays stubborn about treatment changes? Sounds like you need a more creative thinker on your case.

[schoolteacher]

Grace,

My doctor told me the same thing. I am no longer on Herceptin. I receive Tykerb on the study I am participating in. I really want the Herceptin and Tykerb together. I completely understand what you are saying.

Amelia

[GracePang]

Thank you, StephN and Amelia, for your responses. Heard back from my pharmasist. She told me that there is now new information in our hospital that Tykerb/Herceptin could be an option, but only if cancer progressed after using Tykerb alone. If I did progress on Tykerb+Xeloda, she would apply hard for me to get the Herceptin added. All your responses already make me feel much better. Still my onc won't see me before Jan. 3rd; or before my rad onc treats me with Gama Knife. uhh...

[tricia keegan]

Maybe it's time to change your onc Grace for one with a more forward thinking and open mind if thats possible. I'm sorry you're dealing with this, my friend had brain mets before this combo was approved and had temodar with herceptin which gave good results for a while.

I hope your onc can come up with something for you, or a second opinion can be had and just wanted to send good wishes as you face this.

[BonnieR]

I , too, was going to suggest a second opinion. And to say I feel badly that you seem to have an adversarial relationship with your onc. You have enought to deal with without his attitude.

Keep the faith.

[Becky]

Maybe its time for a second and third opinion.

[GracePang]

Thank you all for your responses. My onc is actually one of the best here in our local hospitals. He is already my 2nd one (the previous one was worse) and I try to work out with him. Maybe I am too anxious. Everything here now has to wait for Jan. 3rd; I guess I am unlucky to find the progression at this time.

Wish you all Merry Christmas and Happy New Year to you all! Will have you updated later.

[Joan M]

Grace,

I had my brain met treated with targeted radiation and that was two years ago. So far, I'm doing good. And I don't blame you for being anxious. I've been there, and every time I'm ready for the next brain MRI, which is every three months, I get even more anxious.

Let us know what happens, and try to enjoy the holidays. Although I realize that it's hard.

Joan

[Mary L]

I just realized that quite a few of us have onc visits and tests coming up in Jan. It is so nervewracking time. Best Wishes to all us. Mary L

[MaryAn]

It is frustertating to have a doc that will pointedly just deny a treatment that you feel is better for you. While you say that this is your second doctor, I would not let that stop me if I felt my needs were not being met. Doctors are not Gods and I refuse to treat them as such. I hope you get the help you feel you deserve. I wish you had better news, I guess we all worry about turing for the worst and just hearing we will wait til it stops working seems like we will plug up the dam when it breaks as opposed to making a better dam.

I will pray for you sister. We all need good doctors who include us in the treatment decisions or at least let us know their rationale for their treatment choices.

[GracePang]

Thank you, sisters, for your encouragements. Mary, I think you are right and I will push hard for what I want on Jan. 3rd and have it updated here.

My onc's philosophy is to use drugs unless it is necessary. His logic is that I may run out of options fast if I use them up front. For example, what if Xeloda/Tykerb/Herceptin combo doesn't work? I then have no other choses. If Xeloda/Tykerb combo works, then we don't need Herceptin; if doesn't, we can add Herceptin as another option. I don't know how to interprete this opinion. He said he would use one drug until it stops working, like what he did with Taxotere. When my brain mets were found in July, I asked him to switch to X/T, but he said WBR would deal with brain mets, he would not give up Taxotere, since it was working for my lungs and liver. Until it stoped working for lungs in November, he switched me to Xeloda. Now, brain mets progressed, he may add Tykerb.

Do you see his philosophy? Do anybody else's doctors use this philosophy?

[Jackie07]

Grace,

The statement "First, do no harm" came to mind regarding your question. Since most chemo treatment carries risks and side effects, most oncologist would not use 'excessive' force unless it's absolutely necessary.

But the new study has shown that Herceptin + Tykerb combo does wonders. You might want to show him the report from San Antonio Breast Cancer Symposium to change his mind.

[GracePang]

Jackie,
Thank you so much for the information. Found the article in Day 4 and will bring it to my onc to see what happens. Happy Holidays!

Grace

[yankeebikachic]

I think you should get a second opinion. I know it's hard to change and one more thing to have to do but obviously you are having some differences there and it is very important to have faith in your onc. I think you may have lost some? ?

[GracePang]

YanKee,
good question. I don't know anymore what to expect from onc. When I was first diagnosed as Stage IIIb in 2004, my onc then was soooo lovely and he took care of everything without me asking. He left for another city 4 years ago though and I really miss him.
Ever since my recurrence in sept. 2009, I found I have not been treated the same. The first onc doesn't give me hope and ordered a surgery to remove my port after one week of installaton, even though the port worked well. The reason was the surgery was rough and they found a small clot close to the port (I had no symptom whatsoever). I fought with him to save my port and left him. The second one (the current one) helped me saved my port, but I have to push him for things; sometime, even for an appointment. I am confused sometimes, if I asked too much, since I sometimes feel that I am a trouble maker. I really don't know how other patients take everything without questioning. I think I will eventually change my onc, but I need to ask around and find a good one who would be willing to take me. They have a small circle. I tried to ask for 2nd opinion in Aug after my WBR. The doctor wrote a letter stating she would agree with my onc's plan, without seeing me. I asked for an appointment with her, have not got one by now. See ....

Grace

[GracePang]

Update on Me:
I just had Gamma Knife done last Thursday. Everything went smoothly and the doctors zapped 3 tumors, the biggest is around 1cm. They told me that the MRI showed that these 3 tumors did not grow since December 15th and even got slightly smaller and no new tumors showed up. I am happy with this and I guess it might be due to the Xeloda I have been taking since end of November.

I saw my onc on Jan. 3rd and he would not add Tykerb for now. He would wait until I finish Gamma knife or until I show progression again in the brain or else where. He keeps saying that he doesn't want me to run out of options by changing drugs too often.

This is where I am and I also feel good in terms of breathing after I started Xeloda (I also have lung and liver mets). My next scan will be sometime in February and I hope to have good results from Xeloda.

Grace

[Jackie07]

What wonderful news! We are so happy for you. Thanks for the update.

[Joan M]

Grace,

Good news about getting the three tumors zapped.

As to adding Tykerb, I'd push for it even though you had Gamma Knife.

Although I understand the idea of not using up drugs unless you need them, there's also something to be said in adding drugs to push harder against the remaining cancer cells in your system.

In my own case, since I became metastatic in January 2007 I've had only local procedures (surgery, radiation and interventional radiology), but never chemo, only Herceptin. And while I'm happy with that decision, I'm now concerned that I didn't add a course of Xeloda and Tykerb at my local onc's suggestion at the time I had those procedures. The last procedure was for my brain in October 2008. After the procedures, she offered to give me chemo as a follow-up, but I declined in order to get back to work. I'm now nervous about that decision, and both she and another onc (who I now see) disagree with adding anything currently unless I show progression.

You could get another opinion for additional feedback.

Joan

[flynny]

That's fantastic news! I am so happy for you.

[krisvell]

Grace,
I am happy the Gamma and Xeloda are working for you. It gives me great encouragement as that's what my oncologist recommends for me. Sending prayers and support you are healthy.
Kris....

Kris...

[Rich66]

Doctors are not Gods and I refuse to treat them as such.

Ah...if I could put it on a flag.

[GracePang]

I saw my onc yesterday and asked again about Tykerb. He finally agreed to add it to Xeloda. However, he said he has to cancel Herceptin, since there is no evidence that the two together is safe or not. Nobody here in our local hospital takes Tykerb and Herceptin together and he is very uncomfortable to use them. What can I say. I already gave him the info from SABCS summary about their Phase III study. No matter what, I will start Tykerb along with my 4th round of Xeloda. I am thinking that if I tolerated Tykerb well, I may push him adding Herceptin for me. Thank you all for your support. Love, Grace

[Joan M]

Grace,

A few days ago I heard an online discussion with three oncologists. One of the oncologists, Eric Winer, with Dana Farber, Harvard Medical School, spoke only about HER2. Dr. Winer is well known in this field. He said that Herceptin and Tykerb work very well together and should be given together even if a patient progresses while taking Herceptin. Perhaps you should let your onc know about this. I don't know why your onc is "uncomforable" about giving them together. Please ask him why.

During the discussion, I asked Dr. Winer whether the standards for treating breast cancer as put out by the National Comprehensive Cancer Network (NCCN), indicated this combination. He said that he didn't know. The last time I looked, which was not recently, the standards did not support Herceptin and Tykerb, but only Tykerb and Xeloda if a patient progresses while on Herceptin. And often doctors and insurance companies follow those standards.

Dr. Winer said that Herceptin and Tykerb are not FDA approved in combination. But Tykerb and Xeloda are.

The NCCN standards were posted recently to this board.

Joan

[Jackie07]

Thanks for the update, Grace.

Be sure to check the Tykerb/Herceptin Board and take preventive measures on the side effects of Tykerb. I've seen some members who're able to tolerate as many as four pills...

Sending you good vibes.

[Leslie304]

Hi Grace,
I became metastatic in November with four mets to my brain! (happy 50th birthday to me!) After wbr I was put on Xeloda/Tykerb/Herceptin and contine that regimin still. My onc also feels that over with chemo drugs is not a good thing, but this was the protocol she recommended after the dx. I often wonder if I had stayed on Herceptin if the cancer wouldn't have metastisized. I'll never know now. Now I pray that they can control/freeze what is there. After wbr a scan showed the tumors had significantly decreased in size and I'm wondering if gamma knife or targeted radiotherapy would be an option. When first diagnosed they said it would not be beneficial because the tumors (4) are in four separate places, not near eachother. so we just let them sit there? Doesn't make sense to me.
Good luck to you. I pray things remain stable.