NAVELBINE NOT WORKING, New Game Plan
 

Just returned from my every 2 week jaunt to Chicago, and I am no longer on Navelbine. The nodes in my neck have almost doubled in the past month. I dont qualify for any clinical trials where I am going, and the T-DM1 in Decatur, IL has yet to open. The new game plan is to add Tykerb to the Herceptin, and hopefully gain some time while I await the T-DM1 or something better. Hoping this new combo will control things for a little while....at least my brain will be better protected!

Re: NAVELBINE NOT WORKING, New Game Plan
 

Oh, Sheila, drat, drat, drat! I guess missing out on Tykerb was just too much!
Girl, I'm sorry you have to shift gears, but I trust that it will do the trick til TDM1 comes to town.
You tell that rascal body of yours to behave....you'll not be missing another trip to San Antonio!
Adding you to my prayers.
Luv to ya, ma

Re: NAVELBINE NOT WORKING, New Game Plan
 

Hi Sheila
So sorry to hear your news.I hope the trial comes soon and will be praying that the tykerb is effective.
By the way, don't want to sound trivial but your hair looks great!
Ellie

Re: NAVELBINE NOT WORKING, New Game Plan
 

Shelia,

I sure wish I had some words of advice for you but all I can offer is my support as you continue on this never ending journey. You are one strong woman and I know you will bounce back from this set-back.

Sure hope that trial opens for you soon!

Re: NAVELBINE NOT WORKING, New Game Plan
 

So sorry Sheila, I am thinking of you and hope the
tykerb works with your other treatments.
patb

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila,

Since you haven't had Tykerb before it could do the trick in shrinking the neck nodes.

I'm praying for good results, and I hope the T-DM1 trial opens soon. Is there a list? Are you on it?

Sending you a lot of hugs,

Joan

Re: NAVELBINE NOT WORKING, New Game Plan
 

Tykerb is a powerful drug. I'm praying that it does the trick on the neck nodes. Keeping in my thoughts and prayers.

Tonya

Re: NAVELBINE NOT WORKING, New Game Plan
 

I was hoping you'd get a lot longer run with the navelbine. I hope the herceptin & tykerb will be very successful. Will be keeping you in my thoughts. How is the situation with the vocal chords ---- did that improve or is it the same as a couple months ago?

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila,

I am sorry you are not responding well to the Navelbine, but sure am hoping the Tykerb does the trick. I must say, I admire your positive spin on the situation, by saying your brain will be covered. Way to stay upbeat!

Re: NAVELBINE NOT WORKING, New Game Plan
 

Dear Sheila,

Well crap, this is not good news.... but it's not the worst, either. Tykerb will be just the drug you'll need. Praying for you and sending positive vibes too~~~~.

Love,
Dana

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila,

Good luck with theTykerb. Hope it does the trick for those nasty nodes.

all the best
caya

Re: NAVELBINE NOT WORKING, New Game Plan
 

I am so sorry to read your news. I hope the Tykerb helps. Hang in there and keep putting one foot in front of the other.

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila

I am sorry about this latest development. Is there any way that a node can be biopsied to see if it has changed to being hormone positive? Just thinking out loud here.

Going on Tykerb with Herceptin is a good move. Don't go off the Herceptin no matter what. It just needs more help. Maybe even without biopsy your onc will let you go on an antihormonal anyway. It might do something - who knows.

I am holding you close to my heart with good thoughts and prayers.

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila, I join many in wishing you the very best in this new phase of treatment. Keep up the good fight. xo Ceesun

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila, I'm hoping the tykerb added will give you the result you need.
My best wishes to you:)

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila,

Dang. Just when I was going to email you to see how you were doing...hoping/assuming things were cool. Glad though that you some options. Physically do you feel ok?

(Say when for planning lunch again...!)

Big hug,
Melanie

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila,

I've read that Tykerb is a much smaller molecule and can go where Herceptin and other chemo drugs not able to reach. I'm sending good vibe your way.

Re: NAVELBINE NOT WORKING, New Game Plan
 

I agree with Becky on the don't drop herceptin, and you might be surprised with the herceptin/tykerb combination. I saw a presentation at SABCS last year looking at the factors that they think make one work vs the other. There was clear evidence that they work on different things.

And interesting thought on checking the ER status again - there is evidence that blocking one pathway can sometimes activate another...so it sounds logical to check it out.

Hang in there, my dear!

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila, you hang in there girlfriend and let's hope the tykerb helps and hopefully soon you can qualify for the other drugs. If anyone can do it, it is you. If you are up for it, would you like me to meet up with you the next time you come to Chicago? We don't have to do anything other then visit while you are at your next appointment.
Keep fighting.

Re: NAVELBINE NOT WORKING, New Game Plan
 

Sheila,

Since you and I are in the same rare camp with our breast cancer returning to neck nodes and no place else, I want to give you some hope by telling you that Herceptin/Tykerb, as prescribed for me by Dr. Slamon, is working so far. After three months, the Pet/CT Scan shows the SUV which was 6.3 had decreased to approximately 3. The CAT scan dimension which was 2.5X2.2cm was less than 1 cm. My second PET/CT Scan showed nothing had changed. I will continue getting scans every three months because my tumor markers never have changed during all of this. My oncologist said they do not work as an indicator for everyone.

I had difficulty tolerating 1000mg of Tykerb daily so Dr. Slamon reduced my dosage to 750mg every evening. My primary side effects are fatigue, chronic diarrhea and a rash that comes and goes.

Good luck and please don't hesitate to contact me if you have any questions at all. Just as an FYI, I am having an implant placed in my paralyzed vocal cord at the end of October. I am hopeful this will help with material aspirating into my lungs causing inflammation and a cough. It should also make my voice stronger---I will let you know.

Hugs, Nancy