Good News...Bad News...Okay News [Archive]

NEDenise

08-01-2012, 09:29 PM

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

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

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

Thanks for the update! Still praying...

- Penny

dawny

08-02-2012, 04:38 AM

All my best wishes to you Denise
Dawn

caya

08-02-2012, 05:59 AM

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

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

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

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

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/show/NCT01475006?term=amg+595&rank=1

Sandra in GA

08-02-2012, 07:46 AM

Denise,
Thanks for sharing your update. Sending prayers and hugs your way~
Sandra

ammebarb

08-02-2012, 08:18 AM

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

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

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

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

God bless Denise! Your attitude and determination are amazing and inspirational.

Vicki

NEDenise

08-02-2012, 03:38 PM

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

Sending happy thoughts and lots of prayers to you, Denise.

twosenuf99

08-02-2012, 07:07 PM

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

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

Paty

08-02-2012, 07:30 PM

Dear Denise,

I am glad that you have a better perspective of what it is going on and how you will face it. You sound much much better today, so I send you a hug, good wishes and will keep my fingers crossed for the good results. I am sure you will beat this. I will keep you in my prayers. Love,

Paty

yanyan

08-02-2012, 10:36 PM

Dear Denise, I am rooting for you!! you are a fighter!!

Mtngrl

08-03-2012, 10:08 AM

Oh, Denise,

I haven't been on the site in awhile. I didn't know about your news. I'm so sorry.

I did not want to have you join me in the Stage IV club. Not at all.

Phooey. Cancer sucks.

Love,

lkc Gumby

08-03-2012, 11:00 AM

Hi Denise, Sounds like you have a very good plan. I wish you the very best with your tx and will pray that NED visits you real soon!

embur102

08-05-2012, 06:07 AM

Holding you in love and light, Denise.

Jackie07

08-05-2012, 08:42 PM

Denise,

Gamma-knife is quite effective with very little side effect. You may feel tired for two, three days. It usually takes a while before seeing any reduction of the tumor.

Sending you good vibes.

Bunty

08-05-2012, 11:46 PM

Denise, it would indeed be wonderful for all of us to meet up somewhere wonderful in the world, but at least we have this wonderful place to meet now, and to share our highs and lows, and to learn from each other. (Imagine the cacophony if we were all in one place at one time!!)

It sounds like you have a great team behind you as you jump this hurdle heading for Gold!

Best wishes
Marie xx

NEDenise

08-06-2012, 08:12 AM

Marie!
I just noticed the July 2012 addition to your signature...YAY!!! HOORAY!!!
How did I miss that!?

I'm so happy for you! I truly hope that's the way it stays forever! I'll switch my prayers for you from prayers of healing... to prayers of praise!! OUTSTANDING!

You made my day, my friend!
Stay well!!
Denise

tricia keegan

08-06-2012, 03:11 PM

I'm so happy for you too Marie:)

Bunty

08-07-2012, 04:46 AM

Thanks Denise and Tricia,

If I have made your day with my good news Denise, that makes my day. And yes, I've been giving much thanks for my very surprising news. I had the PET/CT scans hoping that the best would be that the lung mets would not 'light up', and if that happened then I was going to keep going down the road of some kind of intervention on the liver tumour. But lo and behold, nothing lit up - no activity at all, just looks like scar tissue.

So the good news is that it would seem that even though the Herceptin 'failed' last June when the liver met appeared, it seems that the Abraxane has done it's synergistic work with the Herceptin, which was the hope!

I have to say I was very happy with the news.....

Thinking of you a great deal Denise and keeping you in my prayers......

Cheers Marie

LuckyLinda

08-07-2012, 11:44 AM

Thinking of you Denise. Your attitude is inspirational. Thoughts and prayers coming your way.

Linda

NEDenise

08-07-2012, 05:39 PM

Hi Again!
So...
Had an MRI of liver...small spot is clearly a benign cyst of some sort...but now we have a baseline picture, just in case anything pops up later.

Had an MRI of the "spot" on my pelvis...and psych!! there's nothing at all there now. So no bone met...no biopsy...no problem!

And...drumroll please...PRAISE GOD!! my spine MRI was clear!! whew! Dodged that bullet...at least for now!

Met with Radiation Oncologist who is on my Gammaknife team. Nice man. Surprisingly good bedside manner.

Still scheduled for Friday, August 10...start at 6am...lots of MRIs, several docs plan treatment...program robot...then the surgery...so I'm not sure what time they'll actually be irradiating those ugly little lesions...but Jesus knows...so I'm sure all your prayers will be in the right place at the right time! :)

Honestly, friends, I feel better today than I have in a long, long time. I'm excited to get these lesions zapped and get back to feeling like the pre-cancer, bundle of energy me that I used to be!

I have to admit...I'm really hoping to be one of the very lucky few who don't get major diarrhea from Tykerb...I'm due for a little good luck, don't ya think? But, even if I'm tied to the "necessary" for part of every day...it beats the hell out of dead...so it's all good!!

Thanks again for all the prayers and support. If I'm not exhausted when I'm done on Friday...I'll post an update...I know some of you worry (Nancy!). If not Friday...definitely on Saturday!
Denise

adelay

08-07-2012, 06:04 PM

Yeah, some good news. Prayers heading your way for an easy procedure and minimal side effects from Tykerb!

chrisy

08-07-2012, 07:23 PM

Big smile!

Jackie07

08-07-2012, 08:06 PM

Denise,

Glad everything looked good.

Have you taken a look at the information provided by IRSA? I think there's a picture/film somewhere on the site (might just be links.)

http://www.irsa.org/gamma_knife.html (http://www.irsa.org/gamma_knife.html)

The screws that are used to hold the 'frame' to the head might give you some discomfort for a couple of days. Other than that and some fatigue, you should be fine.

Will be thinking of you on the 10th.

Sending you good vibes.

Jackie07

08-07-2012, 08:08 PM

Here's a video clip from U. Penn:

http://www.youtube.com/watch?v=GXTxBd1AZYU (http://www.youtube.com/watch?v=GXTxBd1AZYU)

StephN

08-07-2012, 09:32 PM

Regarding fatigue from Gamma Knife. I did not have any. Felt fine - just needed to recoup a little from getting up so early to check in and from the stress of passing the last MRI the day of treatment. Since they hit targeted spots, the rest of the brain is not affected.

You may feel a need to let loose of the normal routine a couple of days just to let your body and mind start to get over the worries you have faced.

I am SO happy thay turned out to be mostly just worries!

NEDenise

08-07-2012, 09:44 PM

Jackie,
That's the exact video I watched during my "orientation". Love the nurse's outfit!
Thanks!
Denise

Steph,
You have truly been an inspiration during all of this! Thanks! I'll let you know how things go!
Denise

chekmark

08-08-2012, 04:36 AM

I am sooooooo happy. Prayers are already being answered. Still praying for you. Good luck on friday.

Pray

08-08-2012, 05:05 AM

Hi Denises! You little love bird you!

I too shall be praying all goes well for you. You inspire me so! As do all of the women and men on this site! There is unbelievable amount of hope here, all of you make us feel nothing is impossible.

Jackie, awesome video! Very thoughtful. Not only for Beautiful Denise but for all of us worry warts to see treatments that on video do not seem so scary and for us to see what good hands are friends are in. Thank you!

Denise I see you've got this one! I'm sure it is totally doable! Thinking of you always and will be hoping and praying your treatment has the best turn out.

I love you my little Sis,

Peace,

Nancy

KristinSchwick

08-08-2012, 05:33 AM

Denise- I had a similar experience with my bone mets. My breast tumor was Her2+++, and ER-, but before I finished treatment it jumped to the bones. My doc suspected ER+ then but didn't biopsy the bone because (1) painful and (2) alot of false negatives do to the poor technique. Instead he dug up my lymph nodes from over a year prior, and had the + ones stained for estrogen receptors. Apparently they never check for ER status in lymph nodes- only in the primary tumor (breast). Anyway- the lymph nodes were like 98% positive for ER. So ta da! I really felt like God just threw me a bone (pun intended). Just something to think about- or talk to your doc about. :)

JennyB

08-08-2012, 05:38 AM

Very happy for your MRI results that is great news, good luck on friday we will be thinking of you.

Jenny

Rolepaul

08-08-2012, 06:06 AM

Denise,
Nina has had this done three times and said the prep is worse than the procedure. I will say to take the anti-nausea and steroids as she has needed them each time. Let's stay in touch through PM as well. Who knows, maybe it will be like the cartoon and light bulbs go on when you think hard. Sorry, have to have some humor as others get better from the point you are at. Keep asking what the next step will be to get the spots out of the brain. Nina and Carol were successful and others were able to do it with treatments like you are on.

Livefor mykids

08-08-2012, 05:18 PM

That's wonderful news Denise! You are such a speacial spirit! May god watch over you on Friday and answer all of the prayers coming your way!

NEDenise

08-09-2012, 03:36 PM

Okay friends...
It's crunch time.
In exactly 12 hours...my Gammaknife adventure begins.

Freshly washed hair.....check!
Comfy outfit laid out.....check!
Snacks packed...........check!
Books, music, cards packed.....check!
Food deliveries lined up for kids.......check!

Checking in to remind my friends to send love, light, prayers, and positive energy my way.........check!

Not scared at all.....check! (seriously!)
Firmly trusting that I'm in good hands...knowing in my heart that everything will turn out just fine. :) Double Check!

Love to all of you!
Denise