Phooey--Brain Mets

[Mtngrl]

I am having double vision, and I'm also having trouble with balance. I haven't fallen but I'm quite wobbly.

I had a brain MRI Thursday and learned yesterday that I have three brain tumors and some swelling. I will start taking Decadron for that on Monday. And I will meet with the neurosurgeon on Wednesday.

The report says all the tumors are "resectable," which sounds like a good thing.

Any relevant experience, strength, or hope (or encouragement of any kind) would be welcome.

[StephN]

Sorry to hear that you are not now NED in your head, but you will be soon again. By "resectable" I hope the doctor means that you can get after those three spots with something like cyberknife or other radiosurgery. Maybe proton beam.

For me the decadron was the worst part about the whole process of treating my brain mets. I was very compliant with the pill schedule and this will keep you somewhat wired. At times I just talked and babbled because my mind was spinning from that drug!

I will be following for good news!

[Carol Ann]

Hi Amy,

Just seeing this after answering your other post ... standing by with StephN to hear those brain mets have been resected to the trash bin never to return!!

Carol Ann

[Mtngrl]

Thank you, Friends.

I have confidence in my cancer center and my oncologist. I am hoping for the best.

Decadron makes me "wired" and causes unpleasant personality changes, but I understand the need for it. I don't imagine we want our brains to swell!

I've had a good six years. I hope to see many more good years. No need to despair at this point.

Amy

[Pamelamary]

Amy, sorry to hear this news. Hope the treatment will totally eliminates the brain mets - you can take heart from the many women on this site who have beaten them, including our poster girl, StephN. All digits crossed for a great outcome.
Best wishes..... Pam

[jaykay]

Phooey is right! And resectable (as others have pointed out) sounds good to me.

Janis

[Mtngrl]

Luck is such an important, but random, factor, isn't it?

I'll keep you posted.

[Paula O]

I'm sorry you are going through all this, Amy. Cancer doesn't fight fair. I'm glad you have a great medical team you have confidence in, sounds like you are in good hands and getting excellent care.Wishing you the best and rooting for ya, Paula

[Ramsay_Bolton]

Sorry for your news. How big are the lesions? It is unusual to resect more then one lesion unless they are situated closely together.

Gamma knife is a better option if the leisons are less then 3cm and aren't causing mass effect. My wife has had 19 lesions treated by Gamma Knife over the past 18 months and they have all now virtually gone. The side effects are minimal.

[dawny]

Sending hugs Amy ❤️

[Laurel]

POOPITY-POOP, Amy! Gosh, I just want to swear up a storm at his news! Sorry, but seriously I just want to cuss a blue streak! Cancer makes me so mad!

I am so sorry you are facing this. "Resectable" does sound as though you will be a candidate for cyberknife or some such. When will you hear more about your plan for treatment? I am believing for an amazing response and outcome with whatever treatment you choose.

You have my sympathy about the need for decadron. That stuff made me a new level of wacko! I hope you don't pull all-nighters watching a marathon of "Ice Road Truckers" as I did once! I will keep you in my earnest prayers. Please keep us posted as things move forward.

In your corner,
Laurel

[Juls]

Hi Amy

Just wanted to say "thinking of you" & fingers crossed for a great treatment plan.

Juls

[Mtngrl]

Thanks everybody!

I will start targeted radiation treatment next Friday. Just 5 sessions. If all goes well I'll be back to normal in a few weeks.

I will get a leave of abscence from my PhD program--with a due date extension.

Feeling hopeful.

[Carol Ann]

Amy,

Holding the thought for you that exactly that happens!

Consider those mets GONE!!!

Standing by here with you,

Carol Ann

[DianaMK]

So sorry you are going thru this. Prayers sent.

[thinkpositive]

Amy,

I haven't been on the site much lately and was so bummed to see that you have brain mets. You've been through so much already it just seems so unfair that you've now got to contend with this. I don't know what to say. I hope your treatments are effective with manageable side effects. I'll be sending healing thoughts your way.

Take care,
Brenda

[caya]

Amy, I am hoping that your brain mets are knocked out from the radiation. Sending good thoughts and prayers from Canada.

all the best
caya

[MaineRottweilers]

Amy,

I just checked in after a short absence. Yuck, yuck, yuckity YUCK! I'm sorry you have to deal with this now. My fingers and toes are crossed for you. Keep us posted. I hope you are back to your PhD studies in no time at all, you've worked so hard.

[Rolepaul]

Amy,
I am in the Denver area. Nina is 5.5 years remission from Brain mets from HER+. Call me at 269-598-2863 or email me at chemengmba@aol.com. We used Intrathecal Herceptin and Toptecan. Rocky Mountain Cancer Center in Boulder is doing the systemic but Nina flies down to MD Anderson in Houston Texas for the IT herceptin treatment because that is where we started. Resectable means they are likely leptomeningeal, but confirm that. I have helped 25 to 30 women get treated with a high level of stability or remission. Carol from Malta, Mario's wife, is one of the few that has had the cancer come back, but that was after four years.
Paul

[Joan M]

Amy,

I'm hopeful that the targeted rads will eliminate the mets. Good luck with the treatment!

All my best,

Joan

[Mtngrl]

IT can turn on a dime! I just need to rest and wait

[Catherine]

Amy, all the best with your next treatment and the successful outcome we all want for you. Thank you to ROLEPAUL who is helping to share his knowledge about treatment for brain mets with other women per his post above. Our Her2 site is the best! ❤️

[SoCalGal]

Hey Amy,
Ugh - sorry to read about the brain mets. Rolepaul is a great resource. Also wanted to mention that I had a single met gamma knifed in 2008. Nothing's come back.

The steroids wreck havoc with emotions, I have to use Ativan to try to counter some of the hyper zipping. Even just the 40 mgs prednisone I take as premeds prior to herceptin each cycle make me crazy. Today is come down day and I'm a mess, but it does pass.

So glad that you seem to be staying steady. Sending tons of good wishes.
xo Flori

[Juls]

Hi Amy

Hope you are doing well.

I'm missing everyone's updates & posts. Seems very quiet on here recently!

Take care
Juls

[Donna H]

Hi Juls (and All)-

I was thinking the board has been very quiet as well. Hopefully everyone is enjoying their summer. Has anyone had any fun adventures, family bbqs or other fun summer activities?

Donna

[Melissa]

Amy,
I've Been thinking of you and I'm
Sending well wishes!
Melissa

[MaineRottweilers]

Hey, Amy, I hope you are feeling ok. You are on my mind.

[MaineRottweilers]

Amy? I am worried about you. Please check in, if you can.

[Mtngrl]

Oh, sorry! I've been meaning to check in.

I'm still recovering from the brain mets and/or radiation. Quite impaired physically. Slowly getting stronger. Still here!

[Laurel]

Sorry you struggling along, but glad you are getting stronger after your recent treatments. You keep whacking those moles, sister! I will remember you in my prayers.

[Juls]

Hi Amy
Just saw this.
Glad to see your post & that you are feeling stronger.
Take care
Juls

[Carol Ann]

So glad you checked in and are still here, Amy!

<3 <3 <3

Carol Ann

[jaykay]

Thanks for checking in!

[Becky]

Glad you checked in. Get the R&R you need.

Huge hugs

[thinkpositive]

Amy,

So glad you checked in. You had us all worried. Hope you get stronger each and every day.

Take care,
Brenda

[Bunty]

Good to hear from you Amy...... rest and recuperate.
Marie x

[dawny]

Good to see you Amy! xx

[MaineRottweilers]

Amy! Amy! Amy! I was so worried for you. I am thrilled you have checked in. R&R, lady, R&R! Stay strong. Much love.

[Lucy]

I haven't been on the board in a very long time and am sorry to hear you're dealing with this but glad to know you're getting stronger. You have a lot of support and love behind you!

[Melissa]

Amy,
Thinking of you - here's to stronger
And stronger each day!
Melissa

[JessicaV]

Hope you are getting better and better, it must be so hard battling through this one, but you are a battler.
with love
Jessica

[Joan M]

Always wish you the best, Amy.

Joan

[sassy]

Hey Amy, I've been an infrequent visitor of late, so just now learned of your brain mets. Glad to hear your are recovering and sending you prayers and good thoughts.