Brain Mets - new or old?

[NEDenise]

Well,
I thought the dizziness was linked to all the pain meds from my stupid back surgery. But I haven't had any pain meds for two weeks, and I still keep losing my balance.

Soooo...I'm back on Decadron (8mg/day), and I'm having a brain MRI on Wednesday afternoon. Usually, I get results the same day, but since my MRI isn't until late afternoon...I guess I'll have one sleepless night ahead of me.

Besides the balance issue, my handwriting is off, and my vision has improved (ironically- when my brain swells, it must change the shape of my eyes or something)...all the same symptoms as right after Gammakife, so there is definitely hope that the swelling is from the large tumor still healing...evidently, swelling can be a sign of healing too. As long as the swelling doesn't get out of hand, it's okay.

The other option is that I have some sort of new met activity in my brain. That would make me VERY sad...because that would mean the Tykerb isn't working. Very disappointing news indeed, if that turns out to be the problem. If that's the case...I'm in much worse shape than I thought I was. I was really hoping to be healthy, or at least healing for a good while yet.

Please pray for me friends...for healing...but also for strength, in case the news is not what I'm hoping for. I still have lots of fight left in my spirit...but I'll be honest...my body could use a little break. Makes me think of our Sheila. She's such an inspiration to me...and like many of us...I miss her.

Think of me on Wednesday...I'll let you know as soon as I know.
Denise

[yanyan]

Dear Denise, sending you prayers for good news !! I am not an expert on brain mets, hopefully Paul and others will give you more info. Don't lose hope !

[BonnieR]

I often think of you but will especially do so on Wednesday. Keep the faith

[KDR]

Denise,
I can understand your anxiety all too well.
I also know there is little anyone can say to make the feelings go away...until after your test results. This is the Hell we have all come to know. But something tells me you are going to be very happy with your MRI results. Hang around at the office, tell them you need the results NOW. A special invocation going out to St. Therese, Little Flower. Look for a rose.
Sent with love,
Karen

[greenacres]

I am praying for you also! I know the pain you are feeling as I blew out a disc in my neck, had it fixed and now the level above is going to hell-in-a-hand basket :) Percocet daily...but not high doses. I will continue to pray this new activity is not new mets. Sandra

[ammebarb]

Sending my love and prayers, Denise.

[tammymarie1971]

Denise here's hoping it's nothing but swelling and necrosis causing this dizziness or simply eye changes!
Dear Father, you know the anxious thoughts that are stealing Denise's peace, I ask that you please replace those anxious thoughts for feelings of hope and the peace that passes all understanding and that she may get good results from the mri and be able to rest easy and enjoy the life you have given her! I pray this in your name, amen.

[chrisy]

Denise, add my special prayers for peace and healing. Don't get ahead of yourself until you know the results if the scam. Easy peasy, right:)

Ha ha iPhone callsds the scan a scam. Hoping it turns out just so.

[chekmark]

Denise oh Denise, I know nothing about brain mets and hope to keep it that way but could it be something minor like vertigo or an ear infection? I think your break is coming and it is nothing new. You r always in my prayers and will continue to be. Good luck.

[Mandamoo]

Oh Denise - no wonder you are frightened. You have received lovely wise words here. I too will have you in my prayers that it is mere swelling and healing.
I hope you can ease your mind and distract yourself until you have the results.
Amanda xx

[Bunty]

As Chrisy says, don't get ahead of yourself Denise..... I'm sending you love and hope and will send up a few words! I'm glad you shared your worry with us, as there is a big collection of some strong spirits here to help raise yours!
Love Marie x

[LoisLane]

Denise sending healing prayers and strength will be thinking of you xo

[Laurel]

Got your back, kiddo.

[Pamelamary]

Denise, will be thinking of you and sending positive vibes your way. And till Wednesday, just remember to breathe!
Pam. XOX!!

[Ellie F]

Praying x

Hugs
Ellie

[fullofbeans]

prayer coming your way, I think you are amazing

[karen z]

I am thinking about you Denise.
Try and push to get the results by the end of the day.

[caya]

Big hugs and prayers coming your way dear Denise. I agree with karen - push for results by the end of the day. Believe me, if you were the doc's wife, daughter, mother, sister - those results would be ready lickety-split!

all the best
caya

[KsGal]

Praying that it is just more of the healing process. I'm in a similar boat...but having some different symptoms. Im off balance and I am nauseated 100 percent of the time despite nausea meds. I had an MRI and get the results on Friday. I'll virtually hold your hand...Im sad and scared as well. Big hugs...

[NEDenise]

Thank you my friends!
Your prayers and encouragement mean so much...more than I can express! You are a rock in stormy seas...a safe little island of hope where I can catch my breath and know that others have my back. You all really help me "keep the faith".

Karen- since the scan is so late in the afternoon, I may have to wait until morning for results...but I'm planning to show up early...just in case I can get the scan sooner...then the results might be released today. :) Good news would certainly be welcome early...not so good news...I can wait till morning I think. New lesions would be a definite life-changer.

Sandra - sorry your neck is giving you pain. I still have some neck trouble myself - NOTHING compared to the back thing. But the good news is that my back feels great! I hope you get more relief soon.

Chris - Scam!! Not quite as funny as your phone's ammonium/immodium mix-up, but still made me smile. :) I'm really not "trying" to get ahead of myself...or borrow trouble...but it's soooo hard to contemplate Tykerb giving up on me so soon. I know I can have new lesions zapped...no big deal. But I'd much prefer to be able to stop new ones from forming in the first place! That's what will keep me around to see my kids grow up! My poor brain can only take so much zapping before it's had enough.

Geez! Pretty gruesome and a huge downer from someone who claims NOT to be borrowing trouble. Sorry...I guess I need to work on focusing on the poitive a little more. So far, Tykerb is working. Till an MRI says differently...that's my reality. Period.

FOB - I'm amazing!? If that's not the pot calling the kettle black?...what is!!?

KsGal - I'm right there with ya. Really, I am. Until someone walks where we are, I'm not sure they can truly understand the violation we feel. Now, we not only have the beast in our bodies, like all our sisters, but in a very real sense, it's trying to kill not just our bodies, but the person we are. It's trying to scrape away at our personality, our memories... in an instant, it could rob us of the person we are...one bleed...one seizure...and the person we are, could be gone forever. Our bodies might survive but that's not what I want for my family. I admit freely, that I don't feel as "sick" as many of our sisters with mets in other places...their SEs are a misery for them and those who love them. But, for me, having an invader in my brain is horrifying. I don't want to lose me. So, you can bet, I'm praying for both of us to get the kind of news we need to pick ourselves up and fight on! Sending a HUGE hug, filled with strength!

And friends...how sweet are you, that you think I deserve special treatment, early results, just because you love me!! Thank you all for thinking so highly of me...I don't know if it will have any pull in the MRI department, but I'll be sure to mention that I have friends, very special friends, all around the world, who would reeeaaally appreciate a quick report.

I love you guys!
Denise

[sassy]

Praying hard, Denise!

[NanaJoni]

Denise - I hope you know how much we all love you and how hard we are praying.

[JennyB]

Denise - I am waiting with baited breath for your GOOD news - I am sure that is what it will be.
Prayers
Jenny

[Jackie07]

Keeping you company in a sleepless night ...

[dawny]

I am waiting with you too Denise

[NEDenise]

No news yet.
If I don't hear by 9 am...I'm going to call. Patience is usually one of my virtues...but today...not so much! :)

Denise

[carlatte7]

I'm here waiting too

[bejuce]

Praying for good news for you!

[greenacres]

fingers and toes xxxxxxxxxxx for good news.

[Ellie F]

Still praying x
Love Ellie

[caya]

Prayers here too -

all the best
caya

[ammebarb]

Continuing to pray.

[KsGal]

I'm here too....big cyber ((hugs)) I've lit a candle (that's my routine when Im praying for a specific person). Come on good news...

[LeahM]

praying....

[Kellennea]

Oh! I just saw this... I am sending prayers up and tons & tons of good juju too!

[jaykay]

praying, too

[NEDenise]

Well...
It's not good news or bad news...it's unclear news.

There is definitely increased swelling in the area around where the larger lesion was zapped. It's very unclear as to whether this shows swelling associated with necrosis and healing...or swelling due to disease progression.

My neurosurgeon is out of town so two others looked at my scans and definitely want to schedule surgery for next week. I, on the other hand, don't know these fine doctors from Adam, and am thus unimpressed by their advice.

My surgeon, whom I love, will return next week, and I will consult with him on Tuesday. He told me when this whole mess started last summer, that the location of that lesion was too close to my brain stem for his comfort. He didn't want to "cut" there if at all possible. I 'm thinking until I hear from his lips that it's time to change that...it's still Gospel.

So, in the mean time...I'm supposed to increase my steroid intake, and bide my time. And since the symptoms have been helped by steroids so far, I feel like the swellling may well be of the healing variety. You know I'll be spending a LOT of time praying...so please feel free to join me.

And I can't tell you how touched I am by all your support. How could God ever fail to hear the prayers you've been sending from all over the globe. You are a blessing, all of you!

I'll keep you posted...since the steroids won't let me sleep anyway...I'll be awake and around! :)
Denise

[StephN]

Glad to hear there is nothing NEW, and it seems to be just the treated area acting up or in its death throes.

I vote for death throes. It is a sensible move to wait a bit as it is also giving more chance for the steroids to calm the inflammed area.

Now take a deep breath, and give those nerves a soak in a nice warm tub. Always works for me. Fix some herb tea (you don't need to add cafeine to the roids!) to sip while you are at it.

[BonnieR]

Denise,I love your fiestiness! You are so right to wait for your surgeon to return. I still regret being rushed into lung surgery without benefit of a more conservative opinion. Nothing is so urgent that it can't wait a few days for a considered decision Unless of course you are bleeding to death! You are an amazing example of being one's own best advocate. You rock! Keep the faith

[adelay]

Prayers still heading your way~

[ammebarb]

Denise, I too am holding on to the swelling theory. If your increased steroids help additionally, maybe that can reassure you until your neurosurgeon is back. I too am spending much time in prayer, and you sre always included!

[caya]

Denise, Tuesday is only a few days away... very sensible of you to wait for your surgeon, and see what his opinion is. In the meantime, prayers are continuing from Canada, from your friend Caryn, and many others here on this wonderful site.

all the best
caya

[Kellennea]

You are amazing, Denise. I will continue with the good juju and start chanting "healing"

xoxo

[KDR]

Denise
Isn't it always the way?! You just want to put an end to the suspense and know for sure there's nothing left to worry about except some swelling, and your doctor is out.
i hope you spend the weekend doing peaceful things-will be thinking of you.
Yours
Karen

[yanyan]

Prayering for you Denise ! I can't imagine those doctors made such a drastic decision to do surgery next week ! Brain surgery is serious stuff don't they need more evidence to prove the medical necessity for your best interest :(

[LeahM]

Oh Denise...prayers continue...I am looking forward to good news on Tues. Hugs...
Leah

[karen z]

Denise,
I would do what you are doing- absolutely. In the meantime (and I know I would have a difficult time with what I am suggesting) I would take those warm baths Steph is suggesting and try to distract yourself as much as possible. Think of some things you would like to do and do them to relax. Your person will be back soon. Focus on that and not much else.

[Mandamoo]

I believe you are making a wise choice. May next week bring good news of mere swelling due to healing.
A s

[michka]

Denise, you are in my thoughts. It is so difficult not to know. I am sending hugs and I hope you will have good news next week. Michka

[Bunty]

I too am right behind you on the decision you have made Denise, and it's possibly a blessing in disguise having the extra days on the steroids to calm the swelling.

So prayers continue to come from this part of the world for you Denise. Now, how about some ideas for what Denise can do in all those night time hours..... Chat to your friends in Australia during our daylight hours? Online scrabble? Although I'm sure you'd whoop us all being a school teacher, on steroids and obviously a lover of words given your entertaining posts! I'll send a PM with my contact details.

Cheers Marie

[marvass]

Glad to hear that there is no new things to deal with, but the swelling thing could be just the chemicals killing cells, usually this can be controlled by steroids. Can you increase the dose of steroids a little? In the mean time wait for your doctor to see his opinion. Praying for you and wishing you luck!
Mario

[Paula O]

I'm praying for you and am glad you are waiting on your surgeon.

All the best,

Paula

[JillaryJill]

Prayers for "Denise from Philly" On the weekends I have extra time for prayer...and I will offer up an entire rosary for you!

[NEDenise]

Morning Friends,
Hot bath...chamomile tea...check! Thanks for the idea, it helped calm me down enough for a nap last night!

Thanks for all the votes of confidence. Your opinions matter to me. I'm feeling very secure about waiting for my "real" surgeon's opinion. I'm just hoping that he agrees with me...that the swelling is from healing. An actual, open-up-my-skull brain surgery, scares the heck out of me. Of course I'll do it if it's the only option, but so many things could go wrong. It's not something I hope to spend much time thinking about between now and Tuesday. I guess "de-Nile" is not just a river in Egypt! And, why borrow trouble.

Thanks for all the prayers too. I know in my heart that it's the only thing holding me together through all this waiting and uncertainty. And Jill, wow! an entire Rosary! That's a powerful prayer! Thanks!

I'm sooooo looking forward to the day...in the not too distant future...when I can look back on this week and think, "Sheesh, I'm glad that's over! What a lot of worrying over a little swelling!"

Oh! In fairness to the two surgeons who recommended surgery, they thought I was already on high doses of steroids...and my brain was swelling anyway. Once they were informed that the steroids could be "upped" and that my sypmtoms had been decreasing...they backed off of the emergency craniotomy thing.

Sooo...deep breaths, good books...lots of praying...and laughing with my family.
Thanks for hanging with me while I wait.
With love,
Denise

[ammebarb]

Many prayers every day, Denise.

[KsGal]

Well, I too agree it's a good decision to wait for your own surgeon to come back, who is more familiar with your situation and who you feel comfortable with. The waiting just sucks though, with all the thoughts that can run through your mind. I think these brain tumors are a whole other kind of scanxiety.
Im glad the steroids are controlling your symptoms, and also sorry you have to take them.
The results of my brain scan this morning showed I still have three tumors of the original five, and they are about half the size they were. Im six weeks out from whole brain radiation, so they want to wait another six weeks to see the "final result" before we move ahead. I still have quite a bit of swelling, and my doctor said that can go on for many weeks. So, Im thinking it is totally logical and probable that is what is going on with you too, irritation and swelling from the dying tissues.
I say a prayer for you every day...Big hugs to you. I wish you would have gotten some definitive results so your mind would be at ease, but am hopeful when your surgeon returns Tuesday he will have answers for you. :)

[tammymarie1971]

Denise, prayers going up for peace and patience as you wait for Tuesday, which does seem like a wise idea to wait for your regular guy! But the news may simply be continued response to previous treatment...It sounds logical to me!
Tammy

[NEDenise]

Just checking in, friends!
Still hanging in there. :)
Steroids are really starting to aggravate my tummy. Besides my regular Nexium I'm popping Maalox like M&Ms.

And, naturally, my sleep cycles are whacked. I'm mentally tired, but my body is wired.

The other thing I forgot about from my last stink on Decadron...was the joint pain. My hips, knees, and ankles feel like they're MUCH older than I am.

But, on the bright side...no headache! No balance issues! No weird spastic handwriting issues! And, no dizziness! So, what's a little indigestion and sleeplessness in the big scheme of things!?

Not sure what Tuesday's neuorology appt will bring...but hopefully NOT a recommendation for a craniotomy. I guess I'm a big baby...but that just scares me so much! Too many bad 1970s doctor shows and movies maybe?

Anyway...since you're all being so wonderfully supportive...and praying for good news...I just wanted to give you an update.
With love,
Denise

[ammebarb]

Oh Denise, so very glad you posted an update; have been thinking about you often and sending a prayer each time I do. I'm sorry you are having all the crappy side effects from the steroids, but it sure sounds encouraging that they are taking care of the headache, dizziness, balance and handwriting issues. Will continue to hope that a craniotomy won't be necessary. Sending bushels of love.

Barb A.

[karen z]

Denise,
We are all thinking of you and have you enveloped in an old-fashioned group hug. Only a couple of more days now until your person is back.
K

[Rolepaul]

Denise,

Just got a chance to do catching up. Mario knows about the swelling and edema that his wife went through. I am leaning on increasing the steroids as a solution to the issues you saw as well. I know how you feel as we went from November 2, 2009 until now with the worry. As both Carol and Nina show, there are options other than surgery to get this resolved! Tell your doctor that MD Anderson in Houston and Orlando are treating patients if there is progress of the disease. Sorry for getting out of the game so long, but personal matters got in the way.

Paul
(now SuperiorPaul)

[marvass]

Just took a look at your medicine. I think that Nexium and Tykerb do not go together, check it out Denise. I am so glad you avoided the surgery. Still, I suggest you try IT herceptin before anything else. Ask your doctor what he thinks about it.
Mario

[NEDenise]

Mario, Paul, Friends...
Thanks for hanging in with me on this. I will definitely be talking IT Herceptin before considering a craniotomy. It just makes so much sense to me. The ONLY hesitation I would have is the logistics of it all. I'm not convinced my current facility would try it...and both MD Anderson sites would involve a good deal of travel, and expense. But, Hey! If that's what it takes, I'll make it work!

I will also definitely discuss the Nexium/Tykerb "thing" with my onc. I've been viewing Tykerb as my life preserver...I don't want anything to interfere with that!

Thanks again! My best to all of you!
Denise

[PinkGirl]

One of my official duties here is to be the typo-police.
Did you mean 'your last stint' ... because 'your last stink'
works well too ... just wondering if this is like when Sheila
said she didn't like wearing a wig so she just put a banana on
her head ... just wondering ... I like stink better. :)

[NEDenise]

Thank you so much for the giggle!!

When I re-read it later...I noticed it said stink...instead of stint...but I wasn't sure which I liked better! To be mentioned in the same breath as our dear Sheila...well that's an honor I'll treasure...so stink it shall remain!!

I'm off to see the neurologist! Thanks again for the giggle!
I'll post news from appt. later!
Denise

[NEDenise]

Ok!
So at the neurologist today I got a definite maybe. Which, as we all realize is way better than definite bad news!

Here's the news... since the symptoms seem to be resolving with steroids...we're hoping the swelling is caused by...wait for this awesome phrase...

"agonal signs of tumor death"

Does that sound wonderful or what?! In my mind, anything that causes tumors to be in agony...ROCKS!

So the plan, is to wean from the steroids ever so slowly over the next month. In six weeks I'll have an MRI which will be enhanced somehow so they can see the blood vessels and other "stuff" around the old lesion...to help determine whether the lesion is sucking up too much blood, and trying to grow.

I'm feeling well. And relieved. The doctor didn't seem to think the density of the area in the last scan looked like disease progression...but of course, he's not willing to guarantee that. But...there also wasn't any other "new" stuff on the scan either...so that's good too.

Soooo...now I wait and watch for the return of symptoms as I wean from the steroids...heaven forbid. And, of course...I pray...and try to get my house clean before the steroid rush ends! :)

Thanks for hangin' with me friends. Keep the prayers coming!
Denise

[bejuce]

Denise, you are a ROCK STAR. Awesome all around. I love the "agonal signs of tumor death". Hoping for much more of that for all of us. May our tumors agonize and die in face of our strength and courage. Here's to much agony to all tumors!!!

[ammebarb]

Yes, yes, yes! Agonal signs of tumor death sounds absolutely wonderful. I know that it would probably have been most reassuring if he could have given you an absolute, but absolutes are awfully rare with cancer. So, I'd say you had a good appointment and I am glad you didn't get any "bad" news. Now, clean if you must, but don't forget to be relieved and do some resting too....you probably have a few sleepless nights to catch up ! Hugs and continued prayers.

Barb A.

[Bunty]

Thank goodness for your neurologist! Sooooo happy Denise, and of course we'll keep the prayers up. You do indeed ROCK Denise.

Cheers Marie

[jacqueline1102]

How wonderful, Denise! Love the tumor death phrase. Peace be with you during your wait.

Take care,

Jackie

[BonnieR]

Use your rush on something more fun than cleaning!
So happy for you. Keep on keeping the faith!

[Laurel]

Hey, Denise!!!! Terrific news! Can I just say that I love you? And, Pink, loved the whole stint vs stink observation! Really cracked me up.

[KDR]

What a relief! But, told you so!

Love
Karen

[marvass]

So glad for u!

[JillaryJill]

Tumor death phrase = awesome. Congrats! Keeping up the prayers....BTW do you win a prize for over 70 responses in this thread?

[NEDenise]

The PRIZE is all the love!!
Thanks everyone!!

:) Denise

[karen z]

"agonal signs of tumor death"

That phrase REALLY has a nice ring to it !!!
I am relieved.........and happy to hear about this.
karen z

[europa]

agonal signs of tumor death....love it. So happy for you. Yey!

[whatz]

Though I understand your desire for a clean house I'm with Bonnie. Use that steroid rush for something more fun than cleaning :-). So Happy for the No bad News!!!!

[Rolepaul]

Keep on kicking those tumors.

[LeahM]

"agonal signs of tumor death"

what a beautiful phrase.

Always thinking of you Denise!
Leah

[dearjilly]

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

[Mandamoo]

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

[NEDenise]

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

[embur102]

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 ~~~~~~~~~~~~~~~~~~

[Kim in CA]

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=aopdD9Cu-So&feature=player_detailpage

Hugs,
Kim

[Mtngrl]

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.

[Kellennea]

Yay Denise xoxoxo

[KG1993]

Good-bye tumors!

[NEDenise]

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

[ammebarb]

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.

[NanaJoni]

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.

[dearjilly]

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

[BonnieR]

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

[NEDenise]

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

[Rolepaul]

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.

[NEDenise]

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

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

[Bunty]

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

[Jackie07]

Denise and all,

Happy Easter!

[Mtngrl]

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.

[candlegranny]

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.

[KsGal]

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.

[KG1993]

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

[KG1993]

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!!!

[NEDenise]

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

[KG1993]

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