Some not so good news...

chrisy · 01-10-2008, 11:47 AM

Looks like I'm about to flunk out of the Avastin/Tykerb trial. There is a problem in my last scan indicating "interval growth". I have not seen the scan or the report as Dr. Rugo is having it reread. Maybe by some miracle it was a smudge on the radioligist's glasses?

Anyway, I'm pretty bummed but trying to get in gear for what the next steps might be. So far I think it's just more progression in my liver.

I'm not completely without a plan, I have several thoughts already. Any suggestions - including wild ones - would be appreciated

So would good vibes, encouragement, and prayers....

Thanks
Chris

Believe51 · 01-10-2008, 12:05 PM

I am glad that the test scan is getting reread and that you have an idea of where to go with this if need be. I shall shelter you in a special part of my heart until we get more news about this. Of course continued prayers my Special Friend, you will remain in all of my most positive thoughts throughout this all. Try to keep your bearings through this until confirmed.....and then go get 'em. I love you so Chrisy and will wish for your best>>Believe51

PinkGirl · 01-10-2008, 12:10 PM

Sorry Chris T, that's a bummer. Now I understand
why you requested a visit from Tip & Tex. They
are very healing critters.

I don't have any advice about drug combos, but
I will be thinking about you and sending you lots
of good vibes.

Onward and upward - I know you've got what it
takes.

mslinda · 01-10-2008, 12:10 PM

Chris, sorry about this news. I will continue to pray for you.
Linda

Barbara2 · 01-10-2008, 12:50 PM

You have been doing so well and you will probably continue to do so. We pray that if the scans show some growth it will be very slight. It may knock you out of the trial, but your doctor will have another plan for you that could work for a very long time. I'm sure folks on this board will offer suggestions of what has worked for them, too.

Praying for healing for you and the Lord's guidance and direction for medical decisions that will be made.

StephN · 01-10-2008, 12:59 PM

Dear Chris -
I am so glad the Miraval experience got your "scanxiety" to the background for a few days. You were worried, but all your labs looked good so there was reason to be optimistic.

With only two tumors (unless there are more now), was ablation or one of the other procedures out of the question??

Also would be surprised that a little progression would knock you out of the trial. Most trials allow SOME progression if the previous results showed some regression or stable. At least they will give it another round and scan again before sending you on.

Praying for smudges or scarring, not progression.

MJo · 01-10-2008, 01:07 PM

Here's a wild one -- whatever combo of treatment you choose, take the chemicals with you on a world cruise and have them administred in the ship's infirmary.

doh2pa · 01-10-2008, 01:19 PM

Hi Chris,

I am so sorry about your news but encouraged by your spirit. Still tools left in the tool box girl! I too have liver mets that responded very well to TCH (well a modified TCH - the T was a taxol like study drug) and had an 8 month remission on Tykerb/Xeloda, which has since gone south. I am now on Navilbene/Herceptin and although I've only completed one course (3 weeks on, one week off), I do feel better. I was having pain in the liver area radiating to my back and that has almost completely resolved. So I am hopeful that scans upcoming after the second round will be positive.

Don't give up on Tykerb/Avastin. Take a deep breath and see what doc says. If you go the Navilbene route, I'll be happy to give you any info I can.

In my thoughts and prayers,

kareneg · 01-10-2008, 01:26 PM

Oh my dear friend,

You have my good vibes and prayers, I am praying that everything will work out.

Julie2 · 01-10-2008, 01:36 PM

Criss,

Hope the news from your onc is good. Sending all the positive energy you need at this point.

Julie

tricia keegan · 01-10-2008, 01:37 PM

Chrissy I'm so sorry to hear this. I don't have any advice to offer but an abundance of prayer's and good wishes for smudges are winging their way to you right now!

Cathya · 01-10-2008, 01:38 PM

Chris;

I am just wondering why you are not on herceptin? Could they add it to this combo (I know it's a trial so perhaps they won't within the trial) and keep going?

Cathy

caya · 01-10-2008, 01:40 PM

Chris,

Sending you positive vibes and prayers...
I am sure Dr. Rugo will have a new plan for you that will be successful.

all the best
caya

hutchibk · 01-10-2008, 01:56 PM

Hi Chrisy - just know that I am sending every blessing that I can your way... we will get through this, we have learned how to adjust our sails...

jones7676 · 01-10-2008, 02:09 PM

I surely hope for you it was a "misread". But, if it isn't don't give up.....there are lots of weapons in the arsenal that they can try. I hope if you do need a change that they find just the right one for you!

tousled1 · 01-10-2008, 02:16 PM

Chrisy,

I'm praying that you won't "flunk out" of the trial. Hoping that the scan reread will be nothing but good news. but in the event you have to drop out there are many more options out there for you. You are a warrior!

Andrea Barnett Budin · 01-10-2008, 02:17 PM

Oh, Chrisy...! Definitely not what I wanted to hear! Such *interval growth* sounds challenging. And yet, perhaps, another radiologist will see such spots as scar tissue, noting they are cyst-like and filled w/fluid. This happened to me. I got 3 independent radiologists to read my scans (through 3 separate oncs). A lot of leg work, but so worth it when 2 out of 3 concurred that they were not looking at tumors, but the dead remains of tumors. So smudgy glasses or fingerprints on the pics or whatever I am hoping for happy news for you. You deserve that. You have been at this long enough.

Regardless, I am sending you loving, healing energy! And will attach some prayers to go out to the Universe in your name, absolutely!! You are one of the sweetest Souls I have met on this board, full of fun and piss and vinegar and sensible advice when needed. So my Sister stay positive no matter what! Think of Yosemite. Go there in your mind as you sit in the serenity of silence.

I can feel the Universe shift as I type, as good vibes aplenty are being beamed out west to you. Molecules of your destiny are organizing at this very moment to bring you your desired goal. KNOW that in your heart.

As you've said to me in the past, BREATHE, honey. I believe you cannot fail!
Andi

Mary Jo · 01-10-2008, 02:25 PM

Oh Chrisy....I'm so sorry. I can do the prayers and I most definitely will.

Also I send hugs and love dear friend.

Mary Jo

Donna · 01-10-2008, 03:27 PM

Just want to say how sorry I am to hear this news, you are always such a joy to see smiling in your photos and your posts are always positive and fun. There are so many options out there, you are treated out of San Francisco was it? I just remember it was somewhere major - that has to be one of the centers for trials and cutting edge treatment.

Wishing and praying for the best outcome on this for you!

Donna

Sheila · 01-10-2008, 03:59 PM

Chrisy (aka Roomate)
No you know we both can't get dropped on the Avastin...you have to stay on it until I go back on! Seriously, maybe tweeking the meds and mixing it up again will kick butt....maybe adding a Taxol Herceptin to the Avastin will do the trick...I feel bad as I know that the Tykerb had to be much easier that an infusion (except for the poopies)
Sending you lots of love and prayers, you will overcome this, you are a strong woman. Tex and TipToe are on their knees saying prayers for you right now!