NAVELBINE NOT WORKING, New Game Plan

[Sheila]

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!

[Mary Anne in TX]

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

[Ellie F]

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

[Gerri]

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!

[Patb]

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

[Joan M]

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

[Faith in Him]

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

Tonya

[Pam P]

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?

[Laurel]

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!

[DanaRT]

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

[caya]

Sheila,

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

all the best
caya

[ElaineM]

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.

[Becky]

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.

[Ceesun]

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

[tricia keegan]

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

[chicagoetc]

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

[Jackie07]

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.

[chrisy]

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!

[rinaina]

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.

[Nancy L]

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

[lexigirl]

Dear Sheila,

I am hopeful that the tykerb and herceptin combo will knock that neck node out. That darned node needs to be blown into oblivion!

Hugs,
Lex

[WomanofSteel]

Sheila, I am so sorry that the navelbine didn't work for you. I wish you luck with your new treatment. By the way, love the hair!

[Sheila]

Thank you all for all your advice and thoughts and prayers..as always, I dont know what I would do without all the support from all of you! I am still waiting for the insurance company to approve the Tykerb......they dont know what its like being on the other end of the stick...waiting....I wonder how they would feel if they were the one with cancer.
Any advice for do's and don'ts with the Tykerb is appreciated.....a new path again, and if the Tykerb ever gets approved, i am hoping for great results!

[Carolyns]

Hi Sheila,

I took my Tykerb (4 pills) in the morning and then waited to eat. I didn't have any issues with Tykerb. I hope that you get a long ride out of it. Herceptin and Tykerb were one of my easiest treatment combos. It held me for 3 months.

I am still going to Detroit every week for the TDM1 trial. I get treated every three weeks... the other weeks are just blood work and heart testing. It has been harder than I thought it would be but the lump in my neck and the lump on my chest are down by at least 50% 1.5 weeks after my second dose. I don't know if you are still looking into this trial while you wait for your insurance company. I know that many more locations have opened.

I wish you all of the best!

Love, Hope, Peace, Carolyn

[SoCalGal]

Hi there Sheila,

I've been on the Tykerb herceptin combo since DEC 2007 with avastin zometa added in March 2008.

I would highly recommend starting slowly on the Tykerb. I take 5 pills a morning on empty - wait one hour and then can eat. You can have coffee while waiting - in that way the Tykerb Cares slogan makes sense.

Here's what starting slowly means:
2 pills for 4 days
3 pills for 4 days
4 pills for 4 days
5 pills forever.
Worse side effect is becoming a diahhrrea diva but even that calms down after awhile.

PM me if I can answer any other questions. Sending a hug, Flori