Re: Update on chrisy - where's NED????
 

Hi Chris,

I'm sorry to read about your "progress". I wanted to write to let you know I had a liver resection two years ago. Still NED and going strong. I explored all of the options under interventional radiology, (cyberknife, ablation etc.) but for one reason or another I wasn't a candidate for any of them. However, you may very well be. My onc was determined to limit me to chemo options, but I was determined to try something along with the Navelbine. The surgery was rough, but I would do it again tomorrow for these two years. Since a month after surgery (June 09) I have been back on only herceptin. I've been following Lori and Michka who each just had a resection. Hopefully, they can add some insight. Stay strong and start looking into all that the interventional radiologists have to offer. I know you will find a new reason to hope. Hugs and prayers coming your way!

Re: Update on chrisy - where's NED????
 

Chris,

I must say that you amaze me with your humor and positive attitude. The tone of your post is upbeat even though you related your progression. Hats off ...My best wishes and prayers for you finding NED very soon with the next option you choose!

hugs,
shobha

Re: Update on chrisy - where's NED????
 

I don't have advice Chrisy but wanted to say I was sorry to read this news and hope Steph is right re the pet scan!

Re: Update on chrisy - where's NED????
 

Well, Chris, first of all, I love your new Avatar! Secondly, you just hang in there and keep working at it. It sounds like you already have a backup plan going, and as we know, new breakthroughs are always right around the corner. Love, Bill

Re: Update on chrisy - where's NED????
 

Rats, rats, rats. Time to put on those fighting gloves back on. You are an amazing woman Chrisy. I just wish you were still getting a run out of your wonder drug.

Love and hugs to you

Re: Update on chrisy - where's NED????
 

Aw Pooh--and I don't mean Winnie!

Was hoping you'd keep sailing along with this, but it sounds like you've got a great onc that will have you on the next boat to meet NED soon.

Keeping you in my thoughts and prayers.

Re: Update on chrisy - where's NED????
 

Chris,
More beet juice!

Seriously I am sorry you are dealing with the next step. NED where are you? I am positive you and your impressive onc will figure this out. I remember our time at San Antonio. You were the one each morning highlighting all seminars you wanted to attend. And in the evening you would hop from presentation to presentation to gleen all you could from the best researchers in BC. You have so much knowledge in that pretty little head of yours.

Thoughts and prayers are with you.
Donna

Re: Update on chrisy - where's NED????
 

Chris, you are such an inspiration to so many. I want to send my prayers & Best Wishes for success and beating the stupid mets again. I know you will do it!!! Mary L

Re: Update on chrisy - where's NED????
 

Haha Sassy, I think you meant WHINEY the pooh! And Bill it figures you'd like the avatar where my hubby has me in a stranglehold!:) Maybe I can get him to strangle NED for Sheila if he ever shows his face again.

Kris - you're never boring, your're beautiful and inspirational. You just don't know how to spell.

Seriously, thank you all for the great questions, ideas, input and grace. Lots to think about, for sure - I'd like to respond to some of them below:

ElaineM/DonnaD/Catherine - good thoughts on the "weakness" - not sure how to explore that, but it reminds me of the "environment" theory - making my body less hospitable to canser....so yes, more beet juice. And pixie dust. Etc.

As one step, I'm considering a consult with Dr. Keith Block in Evanston to help me get a better handle on some of the nutritional and supplement issues if I'm going "off study". It can get overwhelming

Jackie07 - Thank you for your comment about the missing safety net. It gave me tears and hope.

Lori R, Missyw, Kim - I may PM you if localized treatment is an option. Lori, good you have no regrets - don't give those thoughts the time of day. Keep your eyes forward! Kim, I got info from you years ago on this...may be back for more!

Tumor markers? - They have never been much use for me, thus none of my dr's really rely on them for me. But is worth revisiting as another way to monitor - I've had enough scans to light up a whole city for years...

Pertuzumab - Yes, that is/has been on my radar. Mark Sliwkowski at Genentech who I consider the father of TDM1, has been involved in its development and is very excited. I'm excited about interrupting the Her2/Her3 pairing, which Pertuzumab may do, especially in combination with Herceptin or Tykerb (or TDM1). It is probably a "future" option for me as it is not approved and I don't qualify for any trials. There's a nice one with randomised Herceptin/Xeloda or +Pertuzumab but it's not offered in the US.

Are we SURE there's progression? Sure looks like it. Dec scan was a hint, April's showed more definition, growth (1.5cm now 2.5cm) and PET lights up more - so it's probably not just scar tissue.

Localized options - I'm interested in pursuing if I'm a candidate for this. Not possible to do as a "break" in TDM1 study because it would be treatment of progression, not a side effect or something else. Would probably need a break anyway as lately my platelets have been low - not a good mix with any type of surgery! If it's an option, I'd say this is my window and then back it up with a targeted combo like Herceptin/Tykerb. I'll hold off worrying about the insurance battles for all that until it's time.

Overall, I'm accepting of the idea that it's just time to move on from TDM1. With or without progression, it has been getting increasingly tough on my liver. If it were FDA approved, I would have probably already taken a break, knowing I could restart. It would be a one way ticket for now but in the long run may be a necessary step. One door closes...another opens.

Finally - Flori, flori morning glory...I dunno, that Michael Kors seems a bit of a trollop - making himself available to you for a flash of plastic without any prior preparations....but sometimes tramp trumps flake. And try not to worry your pretty head with your scanic attack - you know there's nothing in there to worry about.

I think I will have more questions as more information comes available...thanking you all in advance for your support and prayers!

Sigh...canserland - crazy world we pass through where progress is bad and "negative" is positive...and cure is STILL not promised but belief in one is still possible (soon, I hope)

Love to all
Chris

Re: Update on chrisy - where's NED????
 

Heard Dr Block speak at UCLA not too long ago - his work is VERY impressive - patients were there in support of him and he'd be worth the trouble to see, IMHO. I also bought his book that night - LIFE OVER CANCER. Three thumbs up from me.

Re: Update on chrisy - where's NED????
 

Chrisy,

I am confident that you and your brilliant medical team will come up with a new plan that will work for you. Your courage and upbeat attitude will carry you far.

May the Force be with you!

Re: Update on chrisy - where's NED????
 

Flori you always go the extra mile! 3 thumbs up!

Re: Update on chrisy - where's NED????
 

My brother-in-law went to see Dr. Block a couple of years ago and changed his eating habits (prostate cancer). So far things are going well, but I think the diet has slipped a bit at this point!

Rave reviews of the clinic from sis-in-law. Certainly could not hurt, especially if you feel some of your dietary habits could change for the better.

Re: Update on chrisy - where's NED????
 

Chrissy,
I went on Tykerb and Herceptin after TDM-1 and saw some response. I am an advocate of local and systemic treatment just like they do when we are first diagnosed. The systemic chemos helped with the soft tissue but never helped my sternum. If nothing els it buys some time. Pertuzumab (Omnitarg) should be available soon, as well as a lot of other Tykerb me too drugs. HANG ON! You'll find something that works.

Kim

Re: Update on chrisy - where's NED????
 

Thanks kim. I also like the idea if local + systemic and will definitely pursue that if it us an option. That implies a reasonable (small) amount of tumor burden which would be good for many reasons. As dr hope says, there are options for me. And yes, bring on the omnitarg, tykerb me too's, akti's whatever

Do hate the waiting game, tho!

Re: Update on chrisy - where's NED????
 

I never heard of Dr. Block until I read your post. I bought his book and finished it over the weekend. It made a lot of sense to me. If you go, keep us posted. I am probably leaning towards Dr. Gaynor in NY.


Kim

Re: Update on chrisy - where's NED????
 

Is that Mitchell gaynor? I remember andibb swears by him. I have his book healing essence. He would be great to see, maybe an easier trip for you. My sis lives near the block center so that's a good option for me.

Re: Update on chrisy - where's NED????
 

Yes, Mitchell Gaynor

Kim