From Leslie: Hi Everyone, I have brain mets and need your support
 

This thread is for Leslie.

She is in the hospital being treated for brainmets and having a hard time starting a thread.

Leslie we are here to support you through this,

Alice

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Alice,
Which Leslie? (fauxgypsy) Or a different one? Regardless I am so sorry to hear this news. There are some wonderful ladies that have battled brain mets and are doing well. I'm sure once we get some more information they will chime in and help in anyway possible. I will be keeping Leslie in my thoughts and prayers.

Chelee

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

I'm guessing it is Leslie 304:

Leslie
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 - started radiation
11-11-09 - Tumor markers normal! Radiation continues.......
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin...flying without a parachute!
11/8 - Brain METS! CRAP! WBRT, chemo again. Then what?

Leslie,

There are other options besides/after WBRT. I'm seeing a radiation oncologist on the 23rd to discuss radiosurgery (the hospital just purchased a Novalis Tx in June) One of the two enlarged tumors (Central Neurocytoma - unrelated to BC)has the potential to block the cerebral spinal fluid to the third ventricle.

Check out 'stereotactic radiosurgery - LINAC' and ask your doctor if it's an option for you. Seems Christine (the Founder of this website) has had whole brain radiation. And she's been doing well for the past 10 years.

Take it easy - know that we are rooting for you. Sending prayers from Central Texas.

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Sending positive thoughts and prayers. I am assuming it's Leslie 304. Please let us know .

Ellie

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Sending ((((hugs)))) and lots of positive vibes Leslie!

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Dear Alice,

I have no advice for brain met txs. I am sad to read that Leslie is being challenged with this. Please let her know that we are praying for her to receive the best tx to kick this cancer's butt.

Hugs and Prayers,
Lexi

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Oh No I'm so very, very sorry to hear about Leslie. Prayers will be going out for her.

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Hi, Yes Leslie 304, She is in a hospital in NY and being treated for 4 brain mets. I am not clear but believe her current treatment is whole brain radiation.

Her treatment is for 25 minutes a day. Her family is about 2 hours away.

She wanted to talk to you all and couldn't figure out how to start a thread.
I think she will be responding soon.

She sounded very strong and is thinking about going to Fox Chase to see Dr. C. If you remember, she went to MDAnderson to see him early on. and was treated in NY.

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

My thoughts and prayers go out to Leslie. Stay strong!

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Sending postive thoughts and healing energy to you Leslie. I have not walked in your shoes and have no personal insight on brain mets but know that others here will chip in on their experiences.

Take care .... remember to breathe....
Karen

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Stay strong sister - you can do this Leslie. Many of us are living well with a brain mets diagnosis. And you can too. I hope the WBR blasts them all to oblivion and you can go about the business of living your life after its over. Love and prayers coming your way, doll.

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Thanks Courtney, I need to hear people have beat this! The rad onc and med onc are using words like worrisome, and so sorry. NOT what I want to hear! I need to focus on your story ... having gotten through it!!! What meds are you presently on?

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

You can and will beat this Leslie - keep the faith girl. I've now had a total of 18 brain mets and I'm alive and kickin - and plan on staying that way for a long LONG time. To answer your question, I am currently on Herceptin, Tykerb, Zometa and the vaccine trial at the U of Washington. We decided not to add a chemo at this time because this combo of treatments was shrinking the brain mets by itself before I had my most recent round of Gamma Knife. We will revisit this decision in January after I finish the trial to see if chemo is warranted. I'm hoping I won't need it but we've talked about Temodar.

Did you already start WBR? Any chance you could do SRS instead?

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Oh yeah, and I take mega doses of Boswellia - an herbal supplement. To read more about the roll of Boswellia in treating brain mets, read:

http://bcwatchdigest-brain.evidencewatch.com/

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Pm from Leslie, she is hanging in there, Her mind is a little fussy.

Stay strong friend, Alice

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

I am sending positive vibes and good wishes to you Leslie. Take good care of yourself and hang in there.

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

An update from Leslie,

Hi Alice, You are the best! Thanks so much for your help with thread and encouragement. I am hanging on to the fact that you are doing so well. I am still processing this news and don't have definitive answers from onc until next week about what to expect going forward. I have had 7 WBRT so far and need three more, then chemo will start again and probably Herceptin. I'm trying not to second guess myself but I wonder if I should have never stopped the Herceptin. It was visibly effective on the primary tumor and perhaps that's why onc didn't think it was warranted but maybe I should never have been drug free!! It sure was nice to feel well fro a while though. No fatigue and no foggy thought processes. Hopefull after Wedesday I will have some answers and a treatment plan and an idea what my future holds. Meanwhile I am so grateful to know I have my friends on this forum chiming in with any advice or suggestions that might help guide my future decisions. I am all ears ladies and gents! Thanks, Leslie

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Leslie, I hope everything improves for you.

Leslie (fauxgypsy)

Re: From Leslie: Hi Everyone, I have brain mets and need your support
 

Leslie (via Alice)- thanks for the update! Hang in there sweetie....
And as for the photos on FB - I will post more new ones this week for your escape trip in your mind here to Italy!

Nostra casa e tua casa! (OUR HOUSE IS YOUR HOUSE!) Anytime you want to come girl --- you let me know!

xoxo Baci - Karen