Kadcyla & Perjeta, Thank You, But It's Over Now
 

Dear all,
It's been a long run (17 months) on Kadcyla and Perjeta. However, we need to change the course of treatment due to a little itty bitty liver met. If you have any input on newer treatments, please feel free to post. We are currently looking at trial http://www.mskcc.org/cancer-care/adu...-trials/10-005. Meeting with oncologist on Wednesday to lay all options on the table.
Karen
Who Believes In The Cure

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Ah Jeez!
I don't have any brilliant advice to give.
I have every confidence in you and in your medical team.

Know that I will be lifting you (and them) in prayer as you work to find the next effective treatment. Seventeen months is a good run! Let's hope and trust that the next regimen will work that well...and more!

Denise

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Karen, Have you tried tykerb and herceptin, while not NED, it held my lung mets in check for 32 months. I start kadcyla next week due to a bit of progression in one. Ceesun Best of luck to you!

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Nothing sage to offer, Karen, but will pray you find something quickly that knocks that met straight to hell where it came from. Please keep us posted.

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

; ) My oncologist thinks so! There were a lot of pros and cons with the trial, and I am grateful for the NED status I had for so long. In fact, I was pronounced "in remission" about a month ago. This is how tricky this dis-ease is! Today, I had the wonderful experience of a healing hand:
http://www.healingministryofdivineme...bout-Paul.html
I forge on, not afraid, at peace, KNOWING there will be success again and again and again. Thanks, Denise, this is a learning tool for all of us in the game.
Ceesun, yes, I did that protocol. I liked it! So freeing, albeit side effects. Glad it kept you for so long.
Laurel, I'm going to do just that. Bye, bye little met!
I'm really thinking outside the box, above and beyond chemo. I personally believe immunotherapy and inhibitors are the future, along with precise custom treatments.

Karen

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Well, RAATS on a ratstick!
This news sort comes out of the blue yonder.

Going after mTOR is something I heard about at San Antonio last December. Glad to see that it has come to fruition for those in the HER2 breast cancer boat.

Guess you have some homework and may you have strength and peace to digest all the new information.

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

What a great attitude you have. Love it! Praying you find that next NED.
Cathy

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Ah drat Karen! I was so hoping you got longer out of your combo!

Sounds like an interesting trial - TKI and moor inhibition and no chemo - yeah! Go for trailblazing I say and Met be gone forever.

As Ceesun mentioned - I thought you had done Tykerb Xeloda but not Tykerb Herceptin? Might be worth considering the dual blockade? Otherwise affinitor may be an option too though the studies have included a chemo given your success maybe just a Herceptin Affinitor option is there too?
Keep trailblazing - we love you. xxxxxx

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Sending you good vibes, Karen.

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Im really sorry to hear that. I know it must have been such a letdown. Im glad to see you are in the fighting spirit, and that you know there are going to be more successful treatments. Big hugs to you. Sending lots of prayers and positive energy your way.

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Steph,
Out of the blue yonder indeed, and even though I don't want to say I'm USED to it, until there is a real cure, the risk is always there. Got to enjoy that remission word for just about two weeks. The trial had me NED on the first cycle. But if you'll remember, it wasn't easy: the SMA (rare intestinal aneurysm developed and then disappeared after removal of Taxol), the loss of most of the sight in right eye due to optical nerves affected by neuropathy, and neuropathy in the worst way continues now. Kadcyla, down the line in the trial, was behaving very much like a taxane. Was it worth it to stay with my family? YEAH!

I found ways around the neuropathy: ice packs, Metanex (prescription B Vitamin combination for diabetic neuropathy), Voltaren gel, NO SUGAR (inflammatory).

One of the drugs on the proposed trial is geared for those who recur on Herceptin.

KSGal, I'm good. I don't get too rattled, a little disappointed, sure. The only thing I'll miss is going every three weeks. I was being infused weekly, then just two months ago, went to every three weeks. I have no doubt we will find another route to eradicate the met and keep me NED.

The trial we are looking at has shown extremely promising results. I'd like to bring as many things to discuss, so thanks for your calls, PMs and messages. The list is getting long...


Karen
Who Believes In The Cure

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Karen - Sorry to hear this but I'm positive you'll be NED again soon. The trial looks great. Temsirolimus crosses the blood brain barrier so that's a good thing.

:-) Penny

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

KDR,
I am very sorry to hear that you are going on to a new treatment. I am in awe of your positive nature. I hope that your next trial works for a long time and that it is easy to tolerate,
Best wishes,
Barbara H.

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

KDR,

Isn't it abit coincidental that this showed up just after you switched to every three weeks? Would they consider switching you back to weekly on your current treatment? In my opinion, I think weekly treatment is sometimes the key to effectiveness.

I'm so sorry about this news-I was wondering how you were doing because you hadn't been posting and I missed seeing your posts and avatar.

Caroline

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

No advice sadly but sending good wishes to you Karen.

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Caroline,
Certainly has crossed my mind. Once the cover is blown, though, it's over for that combo. And what if the new met is necrotic? (They want a biopsy). Thought about that, too. Truth is I don't think I could've taken much more of the regimen, so maybe my Guides were involved in this. As an aside, when I was sitting in the doctors office talking to my research director and onco, the blood pressure cuff fell off the wall. I didn't even turn around. I KNEW.

It's nice to be missed!

Barbara, don't be sorry, we must carry on. The worst part of this for me was the obvious: waiting for the results. Now the Clarity Dust has been blown in my face and I am busy at work.

Penny, groovy, right...that a drug crosses the BBB? I'm undecided on the whole thing, but Wednesday, when I see the results of the Phase 2 trial, I'll let you all know. We should all have a few cards in our back pocket.

Amanda, love you too, girl...but we've kept up. Let's keep doing that.

Jackie, thanks for the well wishes.

Where I go, you might follow. So stay tuned.

Karen
Who Believes In The Cure

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Hi Karen, add me to the list of well wishes. I am sorry you have to start a new treatment, but if it was really hard on you anyway, who knows this may be a blessing in disguise! Please let us know how you get on, it sounds very interesting.

Best wishes, and keep up that fighting, go get attitude!

Dawn. Xxxx

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Tricia & Dawny, thanks for the well wishes. They are meant for all of us!
Karen

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Karen,

I am positive you will again dance with NED I just hope the path is an easy one - good luck

Jenny x

Re: Kadcyla & Perjeta, Thank You, But It's Over Now
 

Hi Karen,
Sorry to hear this but thinking good and positive thoughts and that the docs come up with a good strong knockout punch.
hugs and love
sarah