Need your Help/Advice - Got Dx with Brain Met
 

Hi ladies;
This week I started to have double vision when laying down. Unfortunately, I just got a call at 9am today they found a lesion on the brain stem/cerebellum size 1.6cm x 1.7cm.

Don't know what they are recommending to do but if any/all of you can lend your advice, I would greatly appreciate it.

I'll be spending my weekend reading posts here to get myself educated for Monday's visit with the Oncologist.

( : ... big disappointment needless to say. It also excludes me from finishing the Vaccine Trial. (:

Kris.....

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris, I am so sorry that you have to go through this. It is a BIG disappointment!!! I havn't gone through this but I know all the others who have will be sending you advice and support. I will be paraying for you. Best Wishes, Mary L

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris, my heart is sinking reading your post. Just a few days ago you were by my side supporting me with kind words and encouragements. I am sure many wonderful women here will help you with their own experience but I know how you feel. May our doctors work faster. Sending hugs. Michka

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris, I am offering my support to you - I'm sure some of our members with brain mets will be able to give you suggestions and advice.

all the best
caya

Re: Need your Help/Advice - Got Dx with Brain Met
 

Dear Kris -

Feel bad for your situation, and see you took quick steps. Did you have a brain MRI?
You seem to be picking yourself up and dusting yourself off in short order. That is what is good about this site.

It is sort of a shock at first to see that other BC patients REALLY DO have progression of their disease, but then to follow them down their new path can be very enlightening.

That is how it happened for me, because another member here had posted her stereotactical brain treatment in great detail.

I had the treatment info - just needed to get a grip on the fact that is was actually happening to ME.

It is my prayer that you will have just the one spot and that it is treatable by radiation means.

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris
I have no experience with this at all. I am sorry that you have yet another struggle. There are many here who've experienced excellent outcomes. Please keep the faith. Thinking of you,

Re: Need your Help/Advice - Got Dx with Brain Met
 

Hi Kris,
My thoughts are with you. It's upsetting to receive this news. I heard it 7 years ago this coming May. I assume that you will be treated with targeted radiation. You will not find this treatment too difficult, but I can understand that you are upset about not continuing the vaccine trial. It is likely that this brain met was seeded before your treatment begin. I have confidence that you will be fine after treatment, and will have the opportunity at some point to enter another vaccine trial.
Thinking of you!
Barbara H.

Re: Need your Help/Advice - Got Dx with Brain Met
 

Thank you all for posting your words of encouragement and suggestions. To StephN; yes I had a brain MRI and they faxed me the report this afternoon. My oncologist is away this weekend so I'll have to wait til Monday. Based on the report, it is only one lesion -- 1.4 x 1.6 x 1.9cm involving the right cerebellar peduncle; base of the brain. I really don't understand everything but it looks like that's the only place and there's a lot of nos, unremarkables, normals describng other parts of the brain and tumor type, so maybe that's promising.

Your encouragement and successes gives me to strength to fight this one off too. I only wish that I had a longer time before recurrence but those are the cards that have been dealt to me. You have all been a true safety net; there's always someone who knows what to do.

THANK YOU ALL; keep 'em coming on advice. I really appreciate it.

Kris....

Re: Need your Help/Advice - Got Dx with Brain Met
 

I'm so sorry to hear about this, Kris! I'll be thinking of and praying for you. I believe quite a few members have had success with Gamma Knife - be sure to ask your oncologist about it and keep us posted.

May you find a good and successful treatment plan soon,

Marcia

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris, I have no information or suggestion for you....just a heartfelt wish that you will soon have a good treatment plan that zaps the met. Thinking of you and sending a gentle hug.

Barb A.

Re: Need your Help/Advice - Got Dx with Brain Met
 

Hi and best of luck to you with your treatments. My daughter has brain mets (7) and is soon to have SRS (form of gamma knife) treatment after we see if Tykerb will work to reduce them. There are many options out there and by your reading all you can you'll become educated. So many say do not do whole brain radiation (WBR) and if the dr. feels tumor can be treated by gamma/cyber knife then definitely go for that over WBR. Maybe some of the others will weigh in on this too. My best to you
Joyce

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris,

The message board gave me a lot of support when my brain tumor was diagnosed. I was given a lot of comfort by members who had and who never had a brain met, as well as from women who are early stage.

The next step is to find out whether you are a candidate for stereotatic radiosurgery. I had a craniotomy followed by five dosages of stereotatic radiotherapy. I was disappointed initially because I though the tumor in my left front lobe could be handled in one targeted shot of radiation. The docs said that at 2.6 cm the tumor was too big for that and there would be better control with surgery followed by radiation, but Steph's tumor was larger than that and she had SRS, or one shot.

Let us know.

Joan

Re: Need your Help/Advice - Got Dx with Brain Met
 

Hi Kris,
I can't offer any advice that would be helpful...but I can say the word unremarkable is one of my favorite words since dx with bc. So your right...that is a positive on your MRI report.

Your in good hands here with your her2 family...I know they will give you good direction and advice so you can get this all behind you. Keeping you in my thoughts and prayers.

Chelee

Re: Need your Help/Advice - Got Dx with Brain Met
 

I just want to thank everyone again. I feel more hopeful and have a lot more knowledge than I did earlier this morning when I got the bad news. Thanks to all of you, I can sleep tonight.
A grateful HER2 Support Group member. You all have been so helpful to me.
Kris....

Re: Need your Help/Advice - Got Dx with Brain Met
 

Awww Kris...as you know I am just heart sick with this new development....
I can't believe Kavy too has been diagnosed with Brain mets...sometimes I feel like we are all in the Twilight Zone.

I just spent the last 10 minutes searching for a fabulous thread that StephN posted in 2005 with pictures of her gamma knife. I couldn't find it. StephN, if you read this...did you not post pictures of your procedure? I thought it was incredible; I remember feeling riveted at the time...is it still on this board? Or did we lose it during the transition?
Also, during my search I reread StephN's comments about steroids...I have not taken them, but I seem to recall that they can have challenging side effects....of course you may not have to deal with this so forgive me for jumping the gun.
As you get more info from your doctor, remember to touch base with Brenda (Hutchibk) too as she has had much experience with brain mets. Stay with us. God speed this week.
Love Kim from CT

Re: Need your Help/Advice - Got Dx with Brain Met
 

Hi Kris
I've been researching brain mets as I suspect I have a pretty high likelihood of developing them, in fact since I have never had an MRI I may be harbouring them as yet without symptoms. Rich posted a really good review article last year. I think I brought it up when I searched "Whole Brain Radiation" or "Brain Mets". I'm sure you are in good hands and will get the best treatment available.Thinking of you and hoping that your treatment is as efficient and effective as it has been for so many on this board.I'm really impressed by your ability to go forward with the next step-but then I guess that is no big surprise as you DID run the half marathon last year to my great admiration.
Trish

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris, My prayers and good thoughts are going out to you. Stay strong. Ceesun

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris,
So sorry to hear of the new challenge. It must be reassuring that some of our sisters have had directed treatments a number of years ago (that much more experience and refinement) AND are still doing very well.

Here is to a restful evening.

More hugs coming your way....Lori

Re: Need your Help/Advice - Got Dx with Brain Met
 

Kris
I was so sad to read this news it broke my heart.
Please try to hang in there till you can clearly find out about your options.As others have said there are many who have done really well after treatment.
Please let us know what happens.

Love Ellie

Re: Need your Help/Advice - Got Dx with Brain Met
 

Sorry to hear the news however if I knew then what I know now I believe my daughter would have opted for gamma knife surgery from the git-go. Therefore, since it seems you have just one tumor in the brain ask about it (or other SRS type) rather than whole brain radiation. My best to you
Joyce