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-   -   Some not so good news... (https://her2support.org/vbulletin/showthread.php?t=32116)

chrisy 01-10-2008 11:47 AM

Some not so good news...
 
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

My Sweet Warrior...
 
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

Oh rats!
 
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

You Are Locked In My Thoughts...
 
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

Hi Chrisy
 
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!

goops 01-10-2008 04:21 PM

Chrisy,

I am sorry to here this news - I will pray for you. I hope it proves to be a false alarm.

Bill 01-10-2008 04:35 PM

Hi Chrisy! I'm sorry to hear the news, but it's good you're getting the scans reread, could be scar tissue or dead tumour tissue, that's what I'm praying for. I had thought of Xeloda as well. Keep on smiling! Prayers and love to you, Bill

Faith in Him 01-10-2008 04:50 PM

Chrisy,

I'm praying that it is just scar tissue and that you can carry on with your trial. Sending hugs and love.

Tonya

madubois63 01-10-2008 04:56 PM

Like everyone else, I am so sorry to read your post. Big prayers and hope coming your way for a mistake on that report!!!!

Maryann

Mary Anne in TX 01-10-2008 05:46 PM

I think I'll believe it's smudges and pray like it's not. I'm so sorry you got this news, but will pray for a creative, knock-out answer for you. Luv, ma

Sheila 01-10-2008 05:48 PM

Chrisy
Pack all your worries, fears, and down thoughts into your Diva Bag...they are going on vacation, you will prevail over this...every once in a while we seem to get hung over the edge for a short time....we are with you in this time in healing thoughts and lots of prayers.

Carolyns 01-10-2008 05:50 PM

Hi Chrisy,

Oh, this could possibly stink but I am holding out hope until you get final word.

I had to drop Tykerb and Herceptin after 7 months due to progression in the bones and a pea size lump on my neck that has grown. I am back to Gemzar (again). I finished up Gemzar last December to get rid of liver mets, skin, lumpie bumpies on my chest and kick back the bone activity. It worked nicely for me the last time and I hope it will again.

If you need to try something new, Gemzar worked for me and I found it very tolerable and without hair loss.

Fingers crossed that this is just a fire drill.

Love, Hope, and Peace,

Carolyn

sassy 01-10-2008 06:09 PM

Chrisy,

Keeping you in my thoughts and prayers that this will be a smudge. Know that we are with you in spirit.

hermiracles 01-10-2008 06:57 PM

Thinking of you Chrisy ~ hope it all works out for you.

Blessings
Hermiracles

lexigirl 01-10-2008 08:50 PM

Chrisy,

Thinking of you and saying prayers for comfort as you wait to hear back. I am happy that you have some other ideas just in case...

Hugs and prayers,
Lexi

lilyecuadorian 01-10-2008 09:27 PM

Christy I'm here for you ...thinking about you and visualize that whatever weapon you will used is going to be a kick but drug, we need to stick together like in the movie "ANTZ" .together we are more powerfull and safe and in this site always are ready for " emergency advice " and always get mental-spirit and "information support" we have both ..for keep this fight up....

Jean 01-10-2008 11:52 PM

Chrisy...I am sorry to hear this... I am keeping you in my prayers.

Keep that beautiful smile on your face!
Hugs,
jean

DonnaD 01-11-2008 09:25 AM

Chris,
I am so sorry to hear the news. Perhaps when reread you will have different results.

Just remember there is a right piece to your puzzle they just have to find it.

Thinking and praying for you. Please keep us informed.
Donna

Believe51 01-11-2008 09:29 AM

Hello again, just me...
 
..letting you know that you are in our continued prayers>>Believe51

Vanessa 01-11-2008 11:32 AM

I am sorry that you did not get the news you wanted. I too am hoping and praying it is just a smudge. I will ramp up my prayers for you and will say one right now. Best wishes.

Kim in CA 01-11-2008 11:55 AM

Dear Chris,

I'm hoping upon re reading the scans that a different conclusion is met. If however there is indeed something going on, I would investigate the RFA, as Steph said. Also, since you have been off of the Taxotere for awhile, and you had such a good response, maybe you could try that with Herceptin again. I was also curious if you are still keeping track of tumor markers and Her2 Serum levels. I just keep thinking back to that spot on my liver that turned out to be scar tissue. I'm glad you haven't had too many chemos, so there are still lots of options. Sending you prayers and posistive thoughts.

Love Kim

Patrice 01-11-2008 04:40 PM

Chris,
Like Lily, I'm visualizing anything and everything to make sure you're healthy - sending you all the prayers, good thoughts, and love I can think off...and will anxiously await a great report!
Love, Patrice

Lolly 01-11-2008 06:09 PM

Chrissy, sorry to hear the news. It's so discouraging to have to switch gears again, I know what you're going through but that you have a plan forming is good. Keep a repeat of Taxol/Carbo/Herceptin on the back burner, since it was successful before. We've had some success restarting chemos that I responded to in the past, as long as I didn't have real resistance develop. My onc's rule of thumb is waiting at least a year before reusing a chemo. We added Navelbine to my maintenance Herceptin 3 seperate times until I became resistant. Now we're restarting Taxol with Avastin/Carbo(which I've not had) and I'm showing response. It seems as if you haven't had a lot of different chemo combo's so you've got options, which is hopeful.

Hang in there, let us know what you and your onc come up with.

<3 Lolly

SoCalGal 01-11-2008 07:00 PM

Xoxo
 
Just a quick post to say that I will do my best to find a cure for cancer this weekend. I know we are all just sick and tired of having this crap intrude in our lives.

I am sending you extra prayers and hugs. And some of my strength (comma*) too.

Okay - that's my typing allotment for today - neck problem still BAD.

xoxo Flori

*my ghetto keyboard is missing the comma key - sketchy situation while I'm not me...

hutchibk 01-11-2008 07:26 PM

Flori - I have total confidence in you finding a cure this weekend...didn't know you were even working on it. You are an amazing woman! And I will happily lend you a few ,,, if you need them. Just let me know : )

brenda


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