HER2 Support Group Forums - NEDenise vs NEDecadron Smackdown!

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Re: NEDenise vs NEDecadron Smackdown!

You know, even at my lowest points, you always make me laugh in your posts. You have the most wonderful sense of humor and a positive attitude. I have finally tapered off the steroids, although now I have headaches. Im am not kidding you one bit, in about a week my face is probably half the size it was..not quite back to normal but definitely not in full hot air balloon mode.

Im single, and there is this man that met me when I was first diagnosed who keeps wanting me to go out to dinner with him. He hasn't seen me (obviously!) since the whole steroid effect kicked in. Someone asked me why I didn't take him up on it and I was like...Well, lets see, Im fat, Im bald, I have a hump on my back and what my doctor sweetly refers to as "buffalo neck", I have no nipples...Im really prime dating material right now..lol. So, yeah, I definitely identify. Im sorry you are dealing with all this. Like I said in other posts, I think the steroids are worse than the actual brain treatment.

Keep thinking positive, and know how much everyone here adores you, and all the prayers that are being sent up on your behalf. You ARE a warrior woman, and an inspiration to everyone.

Re: NEDenise vs NEDecadron Smackdown!

Denise
I sent you a PM so you know how I feel...I adore you and constantly pray for your relief of all these issues. I join the others as we wait with bated breath to hear from you after todays scans and tomorrow's MD appt.

But...I have to say...and I say this with GREAT authority as I did have the pleasure of meeting you face to face earlier this month and I was able to sit for 3 solid hours and look at your face....you are beautiful. I know your reflection is someone you are unfamiliar with, but for those of us who are uninitiated into your world, those of us who never saw you before all this crap happened...well....I really gotta admit...I didn't see a "puffy" person. At all. I saw my dear Denise and she is every bit as beautiful as I imagined her to be.
Hold on sister...we all got your back.
Love you
Leah

Re: NEDenise vs NEDecadron Smackdown!

I just gotta say how much I Love you girl! xx

Re: NEDenise vs NEDecadron Smackdown!

Prayers, as always. Thanks for the update - was wondering about you. Jesus loves us!

Re: NEDenise vs NEDecadron Smackdown!

Denise,
Thank you for your update. I've been thinking of you daily.
I wanted to say that I am so happy that the cancer is defo not winning. I am not so happy about the dex, as I know how it feels to be on the crappy stuff. I am not going off, in fear of the seizure/stroke thing too.
I have to wait 4 weeks now for my next MRI to see what's happening. The wait is going to be a challenge.
I am here for you. If you need to chat, call me. I know the feeling of just laying in bed and headachey. I get it. So if you want to talk about it, let me know. You can PM me too.
We are awesome! We will be OK! Things will get better! ok?
Jill

Re: NEDenise vs NEDecadron Smackdown!

Denise,

Love your post!

Glad things are stable and Decadron is doing its job.

Take care, warrior! Looking forward to your next update...

Re: NEDenise vs NEDecadron Smackdown!

Thinking of you, Denise.... You always make me smile, even when you must find it hard to smile yourself - that's a definition of strength and positivity!
Lots of love from Australia.... Pam

Re: NEDenise vs NEDecadron Smackdown!

Praying for you beautiful Denise...knowing and believing God is Faithful and in Control!! Thank you for allowing yourself to vent...everytime I read a post...I always seem to find compassionate, gentle, postitive and always encouraging words to each & everyone of us!!! Blessings & Hugs!!

Re: NEDenise vs NEDecadron Smackdown!

I just HATE cancer. I know how hard it's been to endure my own stuff lately, reading your post reminds me how much we all suffer trying to get well. I am truly sorry you are going thru all of this. Hoping your scan results are good. Hoping that you can soon wean off the dec and start getting back to your old young self. I don't have great advice other than to stay in the moment - it's really all we have and it's the best way to get thru tough times. Sending love and a hug. Flori

Re: NEDenise vs NEDecadron Smackdown!

Hi Denise,
So good to hear from you. I love the way you write...and more importantly I love your spirit. Hang on girlfriend...summer is coming and I am wishing you health and healing so you can enjoy the summer! Oh, and if it makes you feel any better, I am fat right now also....that is why I posted my wedding picture from 30 years ago!!!

Re: NEDenise vs NEDecadron Smackdown!

Decadron addiction or stroking out. HHHHMMM! Thinking the pudgy cheeks are not that bad.
It seems strange to have the edema this long. Can they look at some pressure relief device like a shunt or something similar? I know Carol in Malta had some edema as well. She is getting over that after several months.
I will go ask some people that your doctor may not know and see what they say. You have a pretty good group of physicians on your team, but sometimes a second opinion from another cancer center may make sense.
Good luck and keep buying things on line, but stop using my credit card!

Re: NEDenise vs NEDecadron Smackdown!

Thanks for posting Denise, hoping your face gets skinny again soon!
Hugs to you, my friend

Dawn xx

Re: NEDenise vs NEDecadron Smackdown!

Keep it up.All the best.We are both with you.

Re: NEDenise vs NEDecadron Smackdown!

Well, Denise - you know the hard stuff falls on us strong women. That stuff gets "old" before it gets "over."

I had the same thought as Rolepaul about the possibility of a shunt. I know someone here who had one and it did wonders for her. She never lost her balance, and was able to get off the dreaded Dex.

It may depend on the location of your swelling, but may be better than another drug which could have side effects as well as help.

Re: NEDenise vs NEDecadron Smackdown!

Good attention getter, and appropriate. I hate the puffy face look too.

I hope it gets better fast. Sending love & support,

'lizbeth

Re: NEDenise vs NEDecadron Smackdown!

Oh - I had the Porky Pig round face as well when I had to take the decadron for the inflammation that was impinging on a ventricle in my brain. Fortunately it went away as I did not need the drug for too long, so I completely sympathize with how you do not "look like you."

Yes, I said, "Just call me Miss Piggy!"

Let us know how it goes with this idea of the Avastin.

Re: NEDenise vs NEDecadron Smackdown!

Thinking of you today! Hoping you are feeling better. ((hugs)) Prayers and positive energy.

Re: NEDenise vs NEDecadron Smackdown!

Denise,

You're still beautiful, even with the new face shape. You still have that gorgeous smile.

Thank you for the update. Hang in there.

Love,

Re: NEDenise vs NEDecadron Smackdown!

Hmmm....
Where to begin...

First...thanks everyone for checking in, sending love, prayers, humor, and for making me feel better. You are all so important to me...I can't even put it into words. I still find myself in awe of the fact that I have "sisters" who genuinely care about me...all over the world. Amazing!

Sooo...unfortunately, all the news from my latest appointments and scans is not what I would call 'good'. It's not exactly tragic either...but certainly not what I was hoping for...which was...
"Hey! it all looks great...check back with us in 6 months!" (a girl can dream can't she?)

The week that was...
Monday~scans...asked for copy of disk...self diagnosed slightly increased swelling...enhanced vascular image looks like fireworks display...very pretty, thinking of having t-shirts printed. Feeling frustrated by lack of shrinkage, but no new lesions. All in all...not too bad.

Tuesday~meet with neurosurgeon, he confirms my diagnosis (surprisingly wise, this man!)...does not have report from radiologist yet. I am now steroid dependent, and NEED to get off them...swollen face and neck are minor concerns compared to other health issues, all of which are popping up now...immune suppression, difficulty breathing, muscle weakness... We discuss adding Avastin to shrink necrotic tissue. He will propose it at brain tumor board Thursday PM and get back to me. Might be an insurance issue. Shunt not an option...not really fluid build-up...more a thick goo. Surgery still too risky - his opinion, and more importantly mine.

Thursday~See med onc~fill her in...she's on board with Avastin plan. Herceptin infusion. Still not feeling well...but hopeful there's an end in sight to this latest mess.

Friday~Neurosurgeon calls. Tumor board wants surgery. Huh?! Enhanced images evidently show not only necrosis but some indication of disease around the edges of the irradiated area. S&*#!! I just can't seem to catch a break!

I still say, "Nope"..."too risky...that's an option for waaaaay down the road...if all else fails." He agrees. Since my vote counts most...he will call onc who handles Avastin and see how to get that rolling. My thinking is...if there is cancer at the margins...it's been sitting there, doing nothing, for nearly 9 months now. Stable sounds okay to me. And, with no new lesions popping up...I'm thinking Tykerb is doing good things. Can't really see the upside to rushing into "death-defyingly risky" surgery.

So...that's where things sit. Surprisingly, I'm actually not freaked out. Maybe the 'freak-out center' of my brain is located smack dab in the middle of all that goo, and I can't access it! :) Or maybe, I'm just beyond being surprised by the next item in my cascade of bad luck. Or maybe...and I think this might be the right one...I just know in my heart, and in my gut, that this too shall pass. It's not my time yet...and I still have a lot of work to do before I move on.

Whatever! Just keep those prayers and positive thoughts flowing friends. I'm counting on them. And you can bet, I'm bouncing a bunch right back atcha!

Love to all of you!
Denise

PS - I'm down to 10mg of decadron/day...from 12mg three days ago...cross your fingers! Still freakishly bloated, but making a little progress. :)