Please give me some suggestions

Julie2 · 07-28-2010, 08:44 AM

I am on Navelbine for the fourth time in 3 years for mets in mediastinal nodes. Every time I used it only for 3 cycles and stopped as I reached NED with it. Whenever I reached NED I stopped Navelbine and took Tykerb with Herceptin till I had progression(usually it lasted only for 6 months).

This time I finished 4 weeks of Navelbine and it doesn't seem to work because my her2 serum levels are going up instead of going down. Her 2 serum is very reliable to me, it is very accurate for me in showing response.
Also I am having severe side effects with Navelbine this time.

I met with my Onc. yesterday and she asked me to stop Navelbine and ordered a scan which is on this Friday .

I was discussing my options with her and the chemo I can take now are: Xeloda, Taxol and Gemzar and TDM1

I have one TDM1 EAP center two hours away from me.

I am interested in TDM1. But my onc says TDM1 is very effective even for advanced disease, why use it now when disease is not life threating, may be we should keep it for later use.
And she suggest for standard treatments like Xeloda, Taxol or Tykerb with Xeloda. But if I want to go for TDM1, she is absolutely OK.

I just need some advice from you good people about the choices and TDM1. Your advices would help me brainstrom and take the right decision.

Thank you very much.
Julie

Barbara H. · 07-28-2010, 09:19 AM

Hi Julie,
I suggest that you read my past posts. I developed extensive mets over 6 years ago. The only drugs I took prior to TDM-1 were Hereceptin, Zometa, and six months of Navelbine. Navelbine was working, but I didn't like the side effects. I went on a weekly trial of TDM-1 in Sept. 2007. I was on it for two years. Although it was still working I had to go off of it last fall because I developed lung inflammation as a side effect. It was working so I still could consider it in the future. I have been on Herceptin and Tykerb since last fall. I also feel great, and my markers are normal.

I would not save TDM-1 for later. It is an excellent drug with few side effects. The only side effect I had were frequent nose bleeds, but I also had them as a child. As far as I know, I am the only patient that developed lung inflammation. Why not use an easy and effective drug such as TDM-1 now? It might work for you for years. New effective drugs are being developed for HER2 cancer for when you may need them later. In fact, I heard at a conference that there is hope that HER-2 breast cancer may be cured within the next five to ten years. I do not know if that includes those of us with mets, but there will certainly be better treatments.

Best wishes and good luck with your decision.

Barbara H.

Julie2 · 07-29-2010, 07:22 AM

Barbara,

Thank you very much for your kind advice. I am still waiting for my scan. My mind is not at rest during this period. Trying best to control my thoughts.

Julie

StephN · 07-29-2010, 11:39 AM

Dear Julie -
It is hard to be at peace when you are facing a shift in treatment which could have big consequences in your life.

I have not taken T-DM1, yet see how much good that drug has done for several here who have reached NED on it. To my mind the drug is quite effective where the disease is NOT so extensive, and can really do its job.

The more disease you have the harder it is to control. I would tend to go for the best way to keep the disease tamped down or get a complete response.

chrisy · 07-29-2010, 06:11 PM

I'm with Barbara on this. If you go for the TDM1 now, you might gain better control, for longer. There is more in the pipeline and heck, you still have "all the chemos".

Taxol/Taxotere would do the job, but at what price to your overall ability to stay in the fight? If you can get a really effective targeted therapy like TDM1 and "preserve your resources" so to speak, theres a lot to be said for that.

Whatever you decide will be the right decision for you, but from my experience, I'd go for the "best hope" target therapy which right now might be TDM!...and save the NEXT advance for later.

Good luck with your decision. You will make the right choice for you. But overall it is a good thing to have to choose between several "good" options!

Jackie07 · 07-29-2010, 07:03 PM

Julie2,

Since I've had experienced toxicity of chemo/Herceptin and had to stop my treatment at 22 weeks in 2008 because of lowered MUGA score, I wondered if your doctor (and most doctors) was taking into account the possible side effects caused by more Herceptin-based treatment.

Another possible reason for your doctor's response might have been that she didn't want you to be disappointed in case you don't get to be enrolled/approved for the TDM1 expanded trial for whatever reason. Since TDM1 is most likely going to be approved next January (at least that seemed to be the consensus), why not wait instead of going through all the motions.

It's just my guess.

Joan M · 07-30-2010, 02:37 PM

Julie,

I haven't been on T-DM1, but it would be good to take it now if possible.

But, if for some reason you are denied entrance to the trial, I would speak with your onc about having the nodes removed. However, I'm not sure how many you have and how large they are, or whether or not they are removable.

Since you seem to be free of disease everywhere else, removing them could be an option if T-DM1 is not available.

Joan

Julie2 · 07-30-2010, 08:28 PM

Thanks for all the advices. I think my oncologist's idea was that TDM1 was very effective even for people who used multiple prior chemos and it is a better drug to keep when the body is exposed to all the chemos.
But somehow to think that far is really painfull.
Joan, I can't get the nodes removed because there are multiple mediastinal nodes. The doctors didn't suggest surgery or cyberknife(It is very difficult to convince them)

-Julie

Chelee · 07-31-2010, 12:18 AM

Julie, Your almost dealing with the same thing I am so I can certainly relate to you right now. It's sure not easy making these decisions. I don't want to burn thur a bunch of chemo's either if I could do surgery/cyberknife. My doctors didn't suggest removal of my node either...they say it's a good way to moniter affects of trt and progression. Maybe they think/know if they remove the pesky nodes others will eventually pop back up?

T-DM1 might be the best way to go for you? Such great results from this drug as you know. Chrisy makes some really good points. Good luck deciding on what to do...I know it's not easy.

Chelee