Re: Brain Mets - new or old?
 

"agonal signs of tumor death"

what a beautiful phrase.

Always thinking of you Denise!
Leah

Re: Brain Mets - new or old?
 

Nexium? IT herceptin? Agonal signs of tumour death? MD Anderson? So much is going on. I should have logged on sooner. First, congrats for the great news on the tumour death!! DEATH TO THE TUMOURS, I say! ;)
Second, holy new info Batman (my kids are currently watching Batman on Netflix)
So, what's Nexium? I have to google it.
IT herceptin, is this something a lot of people are doing now? I asked my onc about it, but she didn't give me much info about it.
Third, yay again on the great news.
I hope your symptoms don't come back and you rock the house work!
xoxoxo Jill

Re: Brain Mets - new or old?
 

Glad to hear it seems "agony" is the cause!
A xx

Re: Brain Mets - new or old?
 

Jill,
Nexium is for reflux...you know...reeeeaaaallly bad indigestion. Mine actually burns my voicebox if left untreated...so that's not really an option. But I CAN take the Nexium waaaaay after the Tykerb...so there's no interference.

IT Herceptin is not "common"...but it sounds like it's the "BOMB" for gals like us, who only have brain mets...if, God forbid, they start to progress. Hope neither of us ever needs it...but knowing it's out there makes me rest a little easier while I wait for my next scans. I'm not even sure who or where would be willing to try it if I need it...but again....just knowing the options is a comfort.

Currently, steroids are weaned to 8mg/day...and symptoms don't seem to be coming back...so go agonal signs!!!

Thanks for checking in, friends!
Denise

Re: Brain Mets - new or old?
 

I'm jumping in late, Denise, but so glad to hear your good news..."agonal signs of death" sounds incredible!

hugs and healing vibes sent to you daily ~~~~~~~~~~~~~~~~~~

Re: Brain Mets - new or old?
 

Dear Denise,

Just chiming in to say, so glad it appears your tumors are dying in agony!

I know my liver felt like it was swelling even as my tumor markers kept coming down. And then, my last scan confirmed that there was definite improvement.

When I think of those tumors dying, it reminds me of the Wizard of OZ when Dorothy threw the water on the Wicked Witch of the West!

http://www.youtube.com/watch?v=aopdD...yer_detailpage

Hugs,
Kim

Re: Brain Mets - new or old?
 

Sorry to be so late to this conversation. Denise, you must have been terrified. I wish I had been actively encouraging and supporting you.

I pray for you all the time, though.

Hang in there. Let someone else clean the house. Keep snarking.

Re: Brain Mets - new or old?
 

Yay Denise xoxoxo

Re: Brain Mets - new or old?
 

Good-bye tumors!

Re: Brain Mets - new or old?
 

Hi Friends...
Can you believe I'm still on 8 mg of decadron per day...and can't seem to drop any further without the dizziness/balance mess starting up again!? My face is immense! I feel like each of my cheeks weighs about 3 pounds...and my poor eyes are even puffy now. Because the swelling is so 'bad' this time...I have to wean very slowly...and super carefully. Like dropping back 2 mg per week, until I'm down to only 2 mg per day. Do the math...this could take forever at the rate I'm going! But...whereas the other two times they just told me to wean...and let them know if any SEs showed up...this time, I got an official calendar...and a stroke warning sign magnet.

I don't mean to whine...things could be much worse. I could be having seizures...or God forbid bleeding. But, while the docs say this isn't completely unexpected from a tumor the size mine was...it's still freakin me out a little. This bad boy got zapped 7 months ago...and there's more swelling now than there ever has been.

The good news is that nothing new has popped up...but sheeesh...I could use a little break right about now. And some good, uninterupted, no-steroid-ruined sleep. Plus...steroids are not meant to be taken for this long...'roid rage' is REAL. I'm becoming quite cranky. It's unattractive to say the least. And, I eat like an NFL linebacker!

My next MRI isn't until the end of April...and hopefully I won't still be on decadron then!! But, more importantly...I hope the MRI shows less swelling...more shrinkage...and NO PROGRESSION!

On a happier note...my echo last week not only didn't show a need for a Herceptin/Tykerb holiday...the EF actually went up since last time. Very cool!

So friends...if you're not tired of sending prayers, and healing...I could still use help with this swelling mess. Still hanging tough...laughing as much as I can...

Denise

Re: Brain Mets - new or old?
 

Thinking about you today and continuing to pray. Sounds like the taper will take some patience, Denise. I did a steroid for the entire year of my chemo twenty nine years ago and I still remember the nasty repercussions.....yep, classic "moon" face, slept no more than six hours at a time (and that with a sleeping pill), cleaned for hours before going to work and then hours after getting home (until the time "off" each cycle, when I would crash like I had hit a brick wall! I mention all of that only so that you know someone does understand completely! Grab onto the best part of all this mess.....agonal tumor death!

Apparently the effects of radiation can go on for some time....my central vision in my right (irradiated) eye is expected to disappear between a year and eighteen months from the time the plaque was applied. I'm trying to be glad that there is the potential to kill cancer cells for quite a while!

You are in my prayers daily, dear Denise. Hang in there.

Hugs,
Barb A.

Re: Brain Mets - new or old?
 

Sweet girl - we never get tired of praying for you. It's just what we do! So sorry you're having the decadron blues - I have to take 5 mg of prednisone every day (forever) now because of some lung damage from radiation. Luckily, no real side effects except the appetite issue. And at my age a little puffiness just means fewer wrinkles. Wonderful news about your EF. Just use all that "roid rage" on the cancer and swelling. And anytime during the day stop for just a second and you'll feel all of us sending you energy and prayers.

Re: Brain Mets - new or old?
 

I'm picturing you with tones of books around you, margaritas, and NFL finger foods. You still find a way to make me laugh.
Sending you, less swelling, healing powers from me to you.
xo Jill

Re: Brain Mets - new or old?
 

Well you SHOULD mean to whine! It is totally indicated! I am sure you have all of our permission to do so!
Keep the faith dear girl

Re: Brain Mets - new or old?
 

Thanks, friends!

You gus are always just what the doctor ordered!

I dropped back to 6mg on Tuesday...and I think I'm a little off balance...but I'm going to stick it out for a day or two and see how I feel, before I give up on this dose.

Barb...I had no idea radiation effects could last so long...thanks for sharing your experience...it's comforting to know that what I'm feeling and experiencing isn't new.

Thanks again for the prayers...and Joni...I can definitely feel the glow sometimes, and it feels really good. Didn't enjoy the hours our site was down...missed you all terribly!
I don't know how I'd have survived all this with a smile still on my face...without all the love and support from my HER2 friends!!

Love to all...
Denise

Re: Brain Mets - new or old?
 

Keep on keeping on. I am out scouting ahead for you with the IT Herceptin. I heard large clinical trial starting within a few months at therapeutic dose levels. I hope you don't have to go down this path, but I am there for you if it happens.
I moved from Rolesville Norht Carolina to Superior Colorado. I was going to change to SuperPaul, but Rolepaul seems better.

Re: Brain Mets - new or old?
 

%*$#@! @$%&&!!

Had to go back up to 8mg per day. Balance was getting worse. Hands were starting to shake again.

I think maybe I need to start reminding myself hourl to view this mess as a marathon, rather than a sprint. I guess I'm not as patient as I thought I was.

Paul - can you PM me to let me know where that IT clinical trial may be starting? I know it's not set in stone...just keeping my options open.

Thanks for checking on me. I'll keep you posted.
Denise

Re: Brain Mets - new or old?
 

Sending prayers up so that symptoms come down.... I think you are right Denise, it is a marathon, and of course the strategy for a marathon race is much different to a sprint, where you go it alone. I just found this online, and it reminded me of our little forum here:

General Race Observations: I cannot overstate the value of running the marathon with a group of runners of similar ability. The marathon is a long grind and it will be immeasurably more difficult if you have to go it alone. If your goal pace is close to that of one of the pacers, stick to that group for as long as you can. Aside from the
significant motivational aspects of running with a group, you will be able to take turns drafting and thereby conserve energy.

And that my friend, Denise, is why we are all here for each other.

Marie x

Re: Brain Mets - new or old?
 

Denise and all,

Happy Easter!

Re: Brain Mets - new or old?
 

Resurrection takes on a whole new dimension for someone with Stage IV cancer.

Denise, I love you and I'm praying for you.

Remember that nothing can separate you from the love of God.

Re: Brain Mets - new or old?
 

Hey Denise! Praying for you daily. I'm still working on the belly boob. Lol. Got it in July 15 hr surgery. Radiation damaged veins in chest he had to pull vein from my left arm....my lymphadema is really bad now...but stil can use my arm thank god! I went back in November for uplift and implant in my own boob. Just got out of hospital this week from lipo suction. 5 ounces of pure fat pulled from my love handles. And inserted into belly boob, and he stretched my stomach a little tighter to blend my flat parts with my not so flat parts. Supposed to be out patient I had to spend night. Hope this is my first and last lipo adjustment.....pushing 60 yrs old and over 200 pounds. This old girl wants to save energy for the big fight should I need to fight the dang cancer agin. Doc says fte this pet scan we will move from every 6 months to 12 months..scary for me. I do hope you feel enter my friend and I pray herceptin kicks in and does the job.

Re: Brain Mets - new or old?
 

Denise...((hugs)) I started WBR on Christmas Day, and I have been on steroids ever since. It has taken me forever to wean off these things...Every time I would go down a step, a few days later I would have to bump it back up. I was/am so frustrated. Over the past couple months I have been able to take it down really slowly, so now I am at 2 mg every other day, but I still haven't been able to get off them. Just wanted you to know I know your frustration. As you taper, be sure to do your best to keep exercising. I didn't stick to it like I should, and now Im so exhausted and my muscles in my legs are so weak Im functioning at about 40%. Im sure thinking about you and praying for you.

Re: Brain Mets - new or old?
 

Denise,
My mother is currently fighting a similar battle to yours. She had gamma knife in Feb and last week I started to see her balance off a little. Just got off the phone with my Dad and I think he is going to call doc tomorrow and she will prob go back on steroids.
Hang in there. I hope and pray her tumor results are good news like yours.

KG

Re: Brain Mets - new or old?
 

Not good news.....Mom is really having trouble with thoughts and walking again. mRi scheduled for thurs. sleeping a lot. Had gamma in feb afraid for what is going on now!!!

Re: Brain Mets - new or old?
 

KG
Keeping my fingers crossed for good info on Thursday. In the meantime, sleep probably is a comfort to your mom...being off balance is a disconcerting feeling.

Try not to let yourself get ahead of things. Wait for the test results...I know...easier said than done.

And remember...swelling after Gamma comes and goes. I was fine for months, and now 8 months later...here I am again.

Take a deep breath...feel the love coming your way...
Denise

Re: Brain Mets - new or old?
 

Thanks Denise! I sure hope it is the brain healing causing the issues and not "new" problems! I think about you a lot because I know you have went through similar experiences as my Mother. It helps to hear from others who have/are dealing with these issues.

I hope you have a good day!
Kim