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-   -   Good News...Bad News...Okay News (https://her2support.org/vbulletin/showthread.php?t=55355)

NEDenise 08-01-2012 09:29 PM

Good News...Bad News...Okay News
 
Hello Again,
First, if you're reading this, thanks for checking in and caring how I'm doing. I really appreciate it...more than I can tell you.

Good News: Lungs and Liver clear!! Cyber high fives all around!

Bad News: Found a bone met on right hip.

Okay News: Bone met might be able to be biopsied...and might be ER+...which would open up new treatment options. (I've always been ER- before)

Other News: As of tomorrow...
Starting
Zometa (to harden bones),
Tykerb (lapatnib...because it can cross the blood brain barrier),
and
Herceptin (because Tykerb works better when it has a "buddy" along)

Had
spine MRI today (2 straight hours in a hot, stuffy tube) ...results in a day or two...fingers crossed for no new lesions.

Waiting to
MRI hip spot to see if it can be biopsied.

Gammaknife still slated for Aug 10.

Still no symptoms from mets...so things are good. Love the neurosurgeon! Seems to understand and support my treatment decisions.
One step at a time...praying, trusting, researching all my options...trying to keep things as normal as possible for the kids.
Thanks again for the prayers and support...You guys rock!
Denise

Becky 08-01-2012 10:00 PM

Re: Good News...Bad News...Okay News
 
Dear Denise

Sorry that all of this is happening to you. Its a good idea if your bone met can be biopsied because (generally), ER+ breast cancer loves the bones more than ER- breast cancer. So your docs are right that it just might have defected and joined the + team.

I am always thinking of you and don't live that far from you either if you should ever, ever need any physical help, let me know. I can come (and maybe when you're done we can have lunch or something.

JennyB 08-01-2012 10:29 PM

Re: Good News...Bad News...Okay News
 
Dear Denise,

Glad to hear that other organs are clear ad fingers crosed your hip met is ER+. Hope the gamma is easy for you to deal with and normality can reign someday soon.....

Lots of wishes and prayers heading over your way

Jenny x

Redwolf8812 08-02-2012 02:35 AM

Re: Good News...Bad News...Okay News
 
Thanks for the update! Still praying...

- Penny

dawny 08-02-2012 04:38 AM

Re: Good News...Bad News...Okay News
 
All my best wishes to you Denise
Dawn

caya 08-02-2012 05:59 AM

Re: Good News...Bad News...Okay News
 
Continuing to think of you and sending prayers from Canada to you every day, Denise.

Sure hope that bone met is ER+ - lots of treatment options there.

all the best
caya

Rolepaul 08-02-2012 06:45 AM

Re: Good News...Bad News...Okay News
 
Dr. Brusky at Pitt is looking for Brain mets patients from this board. I let Denise know. If it is Leptomeningeal, he will do IT Herceptin. Still working on the ones deeper in the brain like Carol, Mario's wife, in Malta. I am getting there. Don't give up to all the brain mets patients out there.
Never give up.
I hate to lose.
Even ants can move elephants.

chekmark 08-02-2012 06:47 AM

Re: Good News...Bad News...Okay News
 
All good but a small bone met, hell yes that is good news! Sorry that you have that concern but all and all sounds pretty good. Hoping like Becky said that you are just er+ now. Now to get you thru this gammaknife procedure. We are here for you. You have many friends on here that love you and are praying so how could it not go good. Keeping it together must be a challenge but you are so strong. You will continue in my prayers.

KDR 08-02-2012 07:07 AM

Re: Good News...Bad News...Okay News
 
Denise,
Oh, Denise, I wish I could run over there for a cup of tea with you! You have all of us rallying for you, walk with that power!
Love you,
Karen

schoonder 08-02-2012 07:35 AM

Re: Good News...Bad News...Okay News
 
AMGEN is planning to evaluate antibody drug conjugate AMG 595. It binds to EGFRvIII, DM1 is attached with an uncleavable linker.
http://www.clinicaltrials.gov/ct2/sh...amg+595&rank=1

Sandra in GA 08-02-2012 07:46 AM

Re: Good News...Bad News...Okay News
 
Denise,
Thanks for sharing your update. Sending prayers and hugs your way~
Sandra

ammebarb 08-02-2012 08:18 AM

Re: Good News...Bad News...Okay News
 
I'm glad you posted an update; look for you each time I log on. Sounds like you are developing a good plan, one step at a time. I'm praying for your healing, Denise, but also your emotional strength and peace, and also for your family. Gentle hugs.

Barb A.

tricia keegan 08-02-2012 08:24 AM

Re: Good News...Bad News...Okay News
 
Denise thanks for the update and it sounds like you have a good plan in place and glad you like the neurosurgeon too, sending my good wishes also that you get back to NED asap!

NEDenise 08-02-2012 09:35 AM

Re: Good News...Bad News...Okay News
 
Thanks everyone!
Small change in plans...we've decided to wait till the bone met biopsy before starting Lapatnib and Herceptin. There is apparently another bisphosphonate (instead of Zometa) if the met turns out to be ER+. So I won't start having to do any new side effects until after the Gamma is done. Sounds good to me!

Also had the chance to meet with my new Medical Onc. So far, I really like her. My first one will be a tough act to follow, but the new one seems to listen to my concerns, and does not seem at all threatened by the considerable knowledge base you have all helped me gather. So...once again...things look good.

Becky, you are so sweet!! I would love to meet up someday for lunch, or coffee, or just a hug! Right now I feel about as good as I have in about 4 years. Hoping all these treatment options can keep me feeling that way!

In fact...I wish there were a way we... lots of us... could meet and greet one of these days. Coffee in Times Square? Tea in Williamsburg? Who knows!

Paul, haven't read your PM yet...but getting more excited to hear the news every second! Talked to the new med. onc. about IT Herceptin being a possibility on my horizon, and she seemed to know more about it than the others I've spoken to. She thinks it's a very promising treatment...but she's young, and I'm not sure she's ready to make that kind of jump yet. I guess that's okay. I'm not quite there yet myself...still waiting for scan results.

So...waiting for MRI to be scheduled. Waiting for MRI results. And trying to get my house cleaned before I go back to work!

Thanks for all the prayers and good wishes! You guys give me so much strength, and keep my spirits high!
Hugs!
Denise

StephN 08-02-2012 12:08 PM

Re: Good News...Bad News...Okay News
 
Dear Denise -

Waiting on the new drug treatment could turn out to be a good idea.
Whether or not a bone biopsy can be performed, if you have a low tumor burden the met in hip could be radiated probably quite easily. You may want to ask about any direct approach to the hip tumor.

Taking a biphosphanate is a good idea anyway, and I think there are at least three now which the researchers are winnowing down to best outcomes for each patient.

Tykerb would be a followon to the Gamma Knife. The drug WAS available when I had my GK, but no one thought I needed it since there were only the 2 spots and there was over a 90% chance of success in my case.

Hope the house work will help ease the stress level!

Vicki revised 08-02-2012 01:23 PM

Re: Good News...Bad News...Okay News
 
God bless Denise! Your attitude and determination are amazing and inspirational.

Vicki

NEDenise 08-02-2012 03:38 PM

Re: Good News...Bad News...Okay News
 
Steph,
You sure know your stuff! The onc did mention irradiating the bone met. Sounds like a good plan to me.

Housework is still no fun...but I'm so grateful to have the energy to make some progress. My husband and sons have kept things "clean enough to be healthy"...but they don't clean behind or under a-n-y-t-h-i-n-g!!

Back to work! :)
Denise

carlatte7 08-02-2012 05:20 PM

Re: Good News...Bad News...Okay News
 
Sending happy thoughts and lots of prayers to you, Denise.

twosenuf99 08-02-2012 07:07 PM

Re: Good News...Bad News...Okay News
 
Denise,

Sorry you are going through more stressful stuff.. Always thinking about you. Sending warm, healing thoughts your way. Take care

Tracy

KDR 08-02-2012 07:14 PM

Re: Good News...Bad News...Okay News
 
Rolepaul,
Isn't the current director of Brusky's clinic the former (female/can't think of her name) head at Johns Hopkins? I went to UPMC website and couldn't find information on his need for brain mets patients or anything on a trial.
I go to PGH often. Love it and vacation there every summer. Pittsburgh? Everyone says...yeah, Pittsburgh, it's fantastic.
Karen


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