Re: Progression or Necrosis in the brain?
 

Jill,
Guess what...I was a young mom too...and my sister is one now...I'm used to talking on the phone while being interrupted repeatedly by precious little voices who need mommy's immediate attention. :)

Looking forward to a long chat soon!
Till then...thinking of you, praying, and sending love...
Denise

Re: Progression or Necrosis in the brain?
 

Jill...I just wanted to add my prayers. Im also a member of the brain mets club, and I also have a tumor close to my brain stem. :( Reading what Steph and Denise wrote, all I can really offer is make sure you discuss all the options and all the risks thoroughly with your doctors. I'm so sorry that you are going through this. I know it must make it even more difficult having young children who cannot possibly understand what is going on...and that just breaks my heart. Lots of positive energy headed your way...Jody

Re: Progression or Necrosis in the brain?
 

Hello all -
a little update for you and the fact that I'm typing this may help my mood, as I get to get things off my chest. (like there's much on my chest literally, haha, funny?)
I am really down. Well, up and down. I am happy that the neurosurgeon and I decided to take a wait and see approach for either necrosis or growth. I will have another MRI in 2 months. I think I am having a really tough time because of my vision. I think it's gotten worse. It's only on one side though. I worry about my other side, even though, I know the chances of that happening to the other side or HUGE, it still scares me. I have to bring myself back to "in the moment" and living one day at a time. I'm a bit of a dreamer, so it's a different life living in the moment. It's nice and peaceful, once I'm there though.
The surgeon also said something about lipids and cholorides or something?!?! How one indicates perhaps regrowth and the other necrosis and it's showing both. Now, I know that these are just scans and it's not under a microscope, so there is really no way of 100% knowing until the darn thing is biopsies, but even that could not show 100% he said. If they went in and only got a sample of necrosis, and there was actual regrowth, then it was for nothing anyway. Argh! I'm frustrated. I'm on a rollercoaster. I feel like I need help. I feel like I talk about it too much with my family and they may be getting drained. I also feel that I was feeling fine, just a couple of headaches, but since I started dex, I'm dizzy now. I want to up the dex dose though, because we are going on a plane tomorrow and I don't want any problems. Dex is no friend of mine, or my fella! lol poor guy.
Anyway, thanks for letting me went.
I really love you all. You have helped me so much.
Love Jilly xoxo

Re: Progression or Necrosis in the brain?
 

Jill,
My advice...take the dex. Swelling is BAD. Vacations in Florida...VERY good!
Get on that plane! Relax! Enjoy!

Don't forget to pack the Ativan too!

Talk to you soon!
Denise

Re: Progression or Necrosis in the brain?
 

Thanks Ceesun.
Update: Going to taper down on the dex. From 8mg to 4mg, then see what's it's like to go off completely.
I'm back from Florida and MARRIED!!! I'm Mrs. McCullough. :)
Got married on Anna Maria Island Beach, just the four of us. (my little family)
Anyway, I am still trying to cope with the uncertainty of this brain poop.
I feel like I'm fine,, but get really scared about my vision. I just want my vision to either stay the same or get better. NOT WORSE!
I've been thinking to everything you've all said/written, and I hold on to all of it really tight when I go to the dark place, so I can grab on to the hope that you have given me and yank myself out. I love you ladies for your help.
I have an appoint with my onc tomorrow to talk to her about lapatinib or a clinical trail. I really want drugs, but she doesn't want to drug me if my brain is NED. I feel like I'm constantly having this discussion with her. I don't know what to do. My SRS doc said I should be be on a drug, so what gives?
argh.
anyway, chat soon.
xo Jilly

Re: Progression or Necrosis in the brain?
 

YEY!!!! Congrats on your wedding! So happy for you and your little family. How wonderful. :)

Re: Progression or Necrosis in the brain?
 

MARRIED!!!!! How perfectly wonderful. Blessings on you and your family!
Keep the faith. XOXO

Re: Progression or Necrosis in the brain?
 

Congratulations on getting married. I wish you and your family all the best. I hope you follow up MRI is ok.

Re: Progression or Necrosis in the brain?
 

Jill,

Congratulations on your wedding !!! Love it!!

Joan
xo

Re: Progression or Necrosis in the brain?
 

Oh my goodness, congratulations on your marriage! It sounds perfectly wonderful on the beach with your family...I never traveled much (read at all) because I was always a single mom and couldn't afford it, but for my 40th birthday I was finally able to go with my family to Florida, Amelia Island, and I just loved it! I would have stayed forever. Of course, I live in Kansas (ummm, not very scenic..lol), so it was a big change for me.
I hope the appointment with your onc went well, and you have agreed on a treatment. Lots of prayers and positive energy headed your way, and congratulations again. :)

Re: Progression or Necrosis in the brain?
 

Huge Blessings on your marriage!!! Beautiful!!! <3

Re: Progression or Necrosis in the brain?
 

Thanks ladies,
Nice to hear some good news for a change.
Trips are nice. Nice to get away and "try" to forget about everything else.
I wait another 4 weeks to have another MRI and then we will see what to do from there. A drug may be on the horizon. Hopefully something works for me and I'll have more good news to tell.
Love all your comments and congratulations. You all make me smile.
KsGal, I'm glad you got to finally go to Florida. It's such a nice, relaxing, sunny place. Love the oranges, sandy white beaches, and SEAFOOD!!!! ;) I get it. I live in Oshawa, ON Canada and it is NOT scenic here at all!!! We always planned on moving to the East Coast here in Canada, but stupid cancer decided to make an appearance and has put a bit of a delay on our future plans. I am still dreaming of it though.
Jill

Re: Progression or Necrosis in the brain?
 

Congrats Mrs. McCullough! Sounds like you had a wonderful time with your family, I'm glad.

Hope you have great news on that MRI in four weeks and that your vision improves soon.

Paula

Re: Progression or Necrosis in the brain?
 

Thank you Paula. xoxo fingers crossed! much love
Susan, hugs. Thank you.
I'm very happy to be Todd's wife, finally.

Re: Progression or Necrosis in the brain?
 

Your new avitar looks great! You look beautiful and radiant and what a lovely family you guys make together. :)

Did you get married on the beach?

Wishing you the best,

Paula

Re: Progression or Necrosis in the brain?
 

Thanks Paula! xo
That's very nice of you to say. We got married on Anna Maria Island Beach, FL. It was 6pm, the perfect time for a beautiful sunset.
It was such a great day!
Good memories.

Re: Progression or Necrosis in the brain?
 

Hello my pals!
Here is my update, in case some were wondering.....
Doc called today and said I look "stable"? WT? OMG!!!
I am very happy with this word. The last time I spoke with him, it was all about progression talk, today it seemed more radiation effect/scarring/necrosis talk.
This also made me happy.
So, next....get me off of these darn devil pills, and wait for another MRI in 6 weeks!
I also asked him if he thought I should go on Lapatinib and he said yes, as it penetrates the brain. I said, well, I'll have to convince my ONC, he said....I'll talk to her!! yipeeee......
So next stop...Lapatinibville, no biopsy, and a trip to NYC!
Take care all and thanks for your prayers, words, love, hugs, and all things positive. I wish more positive for all of you.
xoxo Jill

Re: Progression or Necrosis in the brain?
 

Hi Jill, just wanted to chime in and say "WOOHOO". that is great news! Stable is such a fine word, isn't it?

Congratulations on your recent wedding also, how magical having it on the beach. I think I will google now, and see where you were! I am such a sticky beak, like to know everything!

I have absolutely no knowledge on brain mets, but just wanted to send you good wishes from Australia
Dawn xx

Re: Progression or Necrosis in the brain?
 

Thanks Sticky beak. lol
We got married on Anna Maria Beach in Florida. We even have a slide show on Youtube, which I found randomly. I didn't post it! lol weird. Thanks for the Australian wishes. I must get back there one day!
xoxo Jill

Re: Progression or Necrosis in the brain?