Took a chance and it's working!! Good News...

[hutchibk]

Got results from my second MRI today since I was diagnosed with brain mets and started Tykerb/Xeloda. As most of you know, I lobbied my med onc and rads onc to scan me regularly and keep me on watchful waiting to see what kind of response we would get from the T/X crossing the BBB. I wasn't ready for WBR or targeted rads just yet. It was a coordinated decision among the three of us, and a calculated risk that we all agreed would be OK, as long as I stayed well scanned, TMs looked good, had no brain mets symptoms. The minute one of those things indicated otherwise, I was ready to consider targeted rads. Well, TMs (CA15.3) have dropped from 45 to 9 since the middle of May and have stabilized at 9, and the MRI showed today that the five punctate spots are no longer visible and the three bigger spots have shrunk between 1/3 and 1/2 in size in the last six weeks...

My onc is very excited. Says I am a poster child for Tykerb/Xeloda. I wonder if they need one? I could use some mailbox money... LOL.

Just wanted to share! No rads necessary, at least not yet. T/X is still working its magic.

[Alice]

How wonderful!!! congratulations.
Alice

[chrisy]

Woo Hoo! Great News!

[Julie2]

very good news. This is the first time I am hearing about such a good response to Tekerib+xeloda. I am happy for you.

Thanks,
Julie

[Jean]

Brenda,
Loved hearing your great news....so very glad your getting strong
results from treatment...keep it going all the way!

Hugs,
Jean

[VaMoonRise]

Brenda,

That is awesome news!!!! I am so very happy for you. Seems like you made a very excellent choice in your decision to hold off on rads.

I wish they would add Tykerb or Temador to my Xeloda but because I was on Tykerb, Taxol and Herceptin as my first treatment in a clinical trial and progressed after 15 months they wont do it. My Onc. is reluctant to let me try the Temador which also crosses over the BBB because there has been no study done of Xeloda and Temador together.

I then failed on Navelbine/Herceptin and then failed on Gemzar/Herceptin. I am not quite sure how they figure out which drug stopped working for me out of the three in the clincal trial, perhaps they all did. They have taken me off of the Herceptin recently too, it was part of the stipulation of my insurance company authorizing the use of Xeloda. My Onc. had already said that I could come off of the Herceptin before I started the Xeloda because she thought that it had stopped working for me also, which it probably did because my liver mets had grown in size but I had decided to stay on it because I wasn't totally convinced that it wasn't doing something for me, I just felt that it needed something else added to it such as the Xeloda. I didn't like the idea of not being on something until I could get the Xeloda either. Thank goodness though that the insurance company finally did authorize the Xeloda because they denied me twice before approving it. They probably would stop paying for it if I was able to add Tykerb back in which I can't afford without the Ins. It can all be so frustrating.

I will keep you in my prayers that the T/X keeps shrinking those mets down and puts you in NED in no time.

Oh, yeah, I can't wait to try the Tea, thanks so much for sharing the recipe with us.

Sending you lots of love, hugs. well wishes and prayers.

Nicola

[hutchibk]

I think Patty Z is our resident Temodar 'expert' - maybe shoot her a message and see what she has combined it with so far. It has worked very well for her for a couple of years... in conjunction with some targeted rads too, I believe.

[VaMoonRise]

I will be sure to make a post to Patty Z asking about the Temador. So happy to hear that it has been working for her and pray that it continues to for many, many years to come.

[Mary Anne in TX]

Way to go, Brenda!
I love that you made the decision and then ran with it!
Best of all it is working for you!
Hey, the poster child thing would be a kick!
Would love to see your face everywhere!!!!
Great news! Thanks for sharing it with us!
ma

[Mary Jo]

Brenda,

Yours is the first post I read this morning and IT MADE MY DAY! Sending HUGE HUGS and prayers for continued healing.

Love you "sister"

Mary Jo
"Romans 8:28"

[lilyecuadorian]

thanks, FOR THE GOOD NEWS, your news is my too....thanks for give us hope ......

[pattyz]

Brenda!

This is just awesome news! Am so very happy for you... really wonderful results!

My next Mri is on Fri. Appt with onc the following Thurs for report and will again bring up, and this time pursue, the Tykerb to add to the Xeloda.

It has been two yrs today for me on Xeloda with and without Temodar...

More happy scans in your future, lady!

hugs,
patty

[lexigirl]

Great news Brenda! It sounds like you have a terrific team of docs working with you. That's awesome!

Hugs,
Lexi

[Gerri]

YAHOO! I love good news like this!

[Believe51]

Thanks for keeping us posted on your journey, it is so important to be updated with so many of our friends suffering with brain mets. My husband reads the posts I pull and follows everyone's progress, he knows who I am talking about just by remembering their path to NED!! He has asked me about you and if you did get the results yet, I thought that was so cute (would I marry someone who wasn't??)

I cannot wait until he wakes up and reads this news, between his stomach and not starting chemo on the 13th he is a tad under the weather and I am so unused to seeing him like that. He is a laid back Italian man who rarely gets upset with anything (attitude: "Ah, what 'ya gonna do!!=told you he was cute!! LOL!!). Always he has made me feel secure with life, this week I pushed away those doubts.

Thank you for letting us rejoice in your good news, in fact when I get back home for the evening I am going to drown myself in Tumeric Tea, a Pomergranate Henri Bendel candle and warm thoughts of how I have wished this for you for so long. Oh, know you bought the fixings but did you try the tea yet??

Continue prayers on this journey, big cyber hugs, and always positive thoughts with you in them!! And Brenda although we are off to a late start.....WE WILL MEET YOU IN NED, PLEASE SAVE US A SEAT!!!>>Believe51

[hutchibk]

Oh yeah! I LOVE LOVE LOVE the tea! I made it with the turmeric, almond oil (yummy) and vanilla enriched rice milk and a touch of maple syrup to sweeten. It's soooo good.

[Grace]

Brenda,

Wonderful news. So happy for you.

[tousled1]

Brenda,

That's absolutely the best news I've heard for a while. You certainly did make the right decision. Praying that the T/X continues to work its magic for you. Way to go!

[Mary Anne in TX]

It makes so much sense to me cause then you'll know what worked for you! Takes courage though and you have it! ma

[Becky]

This is excellent, excellent news. Its great the treatment is working its magic for you. Its good to get news like this on the board and that Tykerb is working on those brains mets for you!

[Vanessa]

So glad to hear your great news!

[Kim in CA]

Brenda,

That is just wonderful news! The best!

Kim in CA

[Patb]

Brenda
YOU certainly have adjusted your sail on this one. Keep up the happy
news!!!
patb

[Andrea Barnett Budin]

Brenda! Let's party! http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/celeb-confettiYou are my SHEROE (as Maya Angelou calls the bravest of women). Love the imagery. Love your courage. And your great results. Poster child indeed. I think I should be the poster child for Herceptin. Hey, whatever works for you! So glad you did it your way. Smart and courageous -- what a combo. You sound just like a SURVIVOR to me. http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/hug

Andi