My Good Run with T/X is over

[doh2pa]

Well, I knew it couldn't last forever but my 8 month love affair with Tykerb/Xeloda is history. My last scan was September and I only had two tiny liver mets on the radar screen. So I was hoping for a good scan in December but realized the average time to recurrence on this combo is about 8 months. My scans Friday were scary to say the least. Liver mets back and multiplied, lung mets showing up again and looking like some bone activity. I.m disappointed and a little scared. Have been feeling crappy for the last two weeks but thought it was the cumulative effects of the Xeloda. So I'm sure I'll get a call from the onc first thing Monday. Looks like it will be a chemo Christmas - how sucky is that?!

Can you ladies tell me what regimens you have gone onto after failing T/X? I'd like to be armed with some info before I meet with my onc.

Thanks,

[Lolly]

Donna, I'm sorry about the chemo Christmas. I'm in the same boat, but it's too early to say how my new triple combo is working.
However, it doesn't look like you've had Navelbine yet, and it's great in combo with Herceptin. Several ladies at my treatment center have had really good response to lung mets with this combo, and I know several on this board have used N/H for lung/liver mets. I had Navelbine with Herceptin 3 seperate times for lymph and skin mets, with very good results.
There's also Avastin, one of the three I'm on now. There is some uncertainty about insurance approval, but I think it will depend on your insurance. If your onc thinks it may be an option for you ask that his insurance liason get it preauthorized.
Hang in there, there is a new cocktail out there for you ;)

<3 Lolly

[doh2pa]

Hi Lolly,

Thanks for your response. Avastin was certainly on my radar, and I know a few women here on the site besides yourself are on it. But I'm sure he's going to want a chemo so Navilbene may be an option.

Good luck with your journey. Wishing you the best.

[Mary Anne in TX]

Donna, that is the pitts to even think about a chemo Christmas, but if that's what's needed, Navelbine and Herceptin was easy for me. I hope whatever you decide on will knock the socks off those mets. Just want you to know I'm thinking good thoughts for you! ma

[Becca]

Donna, I am also thinking of you. I am on T/X right now, and hoping the honeymoon will last. I see my onco on Tues--always feel a little aprehensive about what he may suggest. Let us know what treatment you decide on--it will help all of us on Tykerb to make the decision about what is next. I hope you can relax and enjoy the holidays. Best wishes and keep your courage on the stickin post. Becca

[dhealey]

Donna, My heart goes out to you. So sorry the nasty buggars are back. I will be praying they find the right combo to bring you to NED.

[lilyecuadorian]

Donna: how about this drug Ixempra (ixabepilone)

http://www.curetoday.com/cureXtra/cu...sue/news1.html (http://www.curetoday.com/cureXtra/currentissue/news1.html)

[tousled1]

Donna,

Sorry to hear about your progression. I'm on Taxol/Carboplatin/Herceptin for lung mets. My last scan showed some improvement. Side effect I'm having is severely dropping of counts. Right now I'm taking a break from chemo and will resume after the Holiday and my scan.

[Julie2]

Donna,

Sorry to hear the news about progression. You can also try for Herceptin-MCC-DM1 trial or the Heat shock protien trial. Whatever you decide may your outcome be wonderful and keep you in remission.

Julie

[LOPSIDED]

I CAN RELATE. FOR THE LAST 9 MONTHS ALL I HAVE BEEN DOING WAS GETTING FASLODEX SHOT. I WENT FOR CT SCAN AND IT SHOWED ENLARGED LYMPH NODES. I GO BACK TO CHEMO THIS COMING TUESDAY. MY DOC IS STARTING ME ON A NEW DRUG CALLED IXABEPILONE (IXEMPRA). IF IT WORKS I WILL ALSO START TYKERB. I WILL PRAY YOU FIND A NEW COMBO THAT WORKS FOR YOU

[doh2pa]

Hi All,

Thanks for your encouragement and information. You ladies are wonderful.

As far as the practical advice, I was on ixabipelone with carbo and herceptin for 6 months. It totally knocked those liver mets out and I was free and clear for 6 months - so I would highly recommend that combo to anyone out there with liver mets. Still waiting for the onc to return my call to see what he recommends. I will keep you all posted.

Just another curve ball.......

[hutchibk]

Maybe ask your onc about Ixempra again... maybe with Xeloda. I will try to remember to look for info about it. Do some google searches and see what you can find. It is getting a lot of play right now. It's currently in trials with Xeloda.

[Lolly]

Donna, that's a good suggestion to ask about adding Ixempra again. My onc has re-used successful chemo on me if it's been a year since I've had it. He feels if the chemo has worked and been stopped before resistance develops, and it's reused after enough time has elapsed, the cancer cells "forget" they've been exposed before and are dead ducks, lol. This theory worked well for me with Navelbine, we reused it 3 seperate times. It's worth a discussion with your onc if the Ixempra knocked the mets out last time.

<3 Lolly

[doh2pa]

Hi All,

Well started on weekly Navilbene and back on Herceptin. The first treatment was last Wednesday and ROUGH!. I had intense back pain and horrible acid stomach. Thanks to a very wise nutritionist friend, I got the stomach issues under control saturday (but lost 6 lbs!). I am on constant Percoset for the back pain, but hopefully this will not be for too long of a time. Second treatment yesterday was much better. I'm not feeling too bad today.

Thanks for all your support, let's hope this does the trick.

[GemmaG]

Hi Donna,
I'm also on a weekly Navalbine and back on Herceptin in October since Tykerb/Xeloda didn't work for me. I usually get the side effects (ie. nausea, abdominal pain, back pain) on the third day after the infusion. I'm also on Percocet for pain and Oxycontin. I'm praying that this new combo will work miracles for us. My love to you.

Lots of Love and Hugs,
Gemma

[Mary Anne in TX]

Donna, I hope this last treatment continues to go more smoothly for you. And Gemma, I'm praying that you both have the remission that is needed for NED! This stuff just stinks! It's time for you both to have a good break and things work for you!