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dhealey
10-20-2007, 05:54 AM
I am freaking out alittle. Tuesday I had a herceptin treatment and saw my oncologist. Showed her a swelling I have in my neck and complained of dizziness and stumbling problem I have had lately. She sent me for a CT sacn of my neck and head on Thursday. Got the CT results yesterday and I have two 2-3mm enhanced areas on the left and right side of my brain. I was called to get a MRI scan this morning at 6:00am. I was really taken by surprise by all of this and am waiting to hear results sometime today. Very disappointed as I was to walk the marathon in the Avon Walk for Breast Cancer today which also marked my one year survival. My daughters and I raised $7,200 for this event and I have trained all summer. Very disappointing. My husband and I did drive to Charlotte last night to turn in the donations. My question is how do they treat small brain mets? I know several of you on the board have had to deal with this and need advice. Has anyone had mets within a year of diagnosis? I know the chemo and herceptin do not pass the blood barriers of the neck. Please advise me anyway you can.

KRISS
10-20-2007, 06:06 AM
I don't have the answer to your question, sorry. But I just wanted you to know that I will send a prayer or two your way. These things are never easy and the waiting is worse. And what a disapointment abput the walk. But just know that you are there walking in the spirt of all the women there. Let us know as soon as you get your results.

Mary Anne in TX
10-20-2007, 06:07 AM
Debbie, I wish I knew what to tell you, but I don't. I just want you to know I care and will pray for quick NED. mary anne

Jean
10-20-2007, 07:14 AM
Debbie,
I am so very sorry that your MRI showed mets. Please know I will be saying special prayers for you. I know other ladies on the board have
delt with this successfully...Brenda I believe just recently.

As far as your walk for the cure....you are there my dear in your
beautiful spirit. Please keep us updated....

God Bless,
Jean

Becky
10-20-2007, 07:39 AM
Dear Debbie

First, CTs are not reliable on the brain. However, that said, it did show something and the brain MRI will be able to give you a better picture of what is going on (could just be vascularization).

I know it is hard to not worry so I will not even suggest it because I worry regardless. Just know that I am here worrying about you worrying and I am thinking about you and have my arms wrapped around you. We are all here for you. I hope you hear your news as soon as possible.

Love and big hugs

dhealey
10-20-2007, 07:53 AM
Thank you all for you concern and kind words. I will let you know what the next step is.

Sandy in Silicon Valley
10-20-2007, 08:42 AM
Hi, Debbie -

Depending on what the brain MRI today shows, if the two spots that showed on the CT scan are indicated on the brain MRI, you'll likely be given the option of SRS (stereotactic radiation surgery: GammaKnife, CyberKnife, XKnife, Novalis).

SRS is very easy and non-invasive - one or two out-patient sessions, maybe an hour each. They involve sending very low-rads beams, computer-guided, aimed at the spots from numerous places around your head, which are too weak to cause any damage to your skin or healthy brain cells on the way in, but when they all meet at the spot, they zap/fry whatever cancer cells are there.

I've had 3 different CyberKnife procedures, and they were all easy. The MRI itself is noisy and enclosed - I don't happen to suffer from claustrophobia, so only the noise & staying still bothers me, and I take an Ativan beforehand. Some of the SRS treatments require a mask that is "bolted" to your head to keep you still during the procedure - and I've heard that the bolts can leave temporary dents and a pressure headache - nothing too serious. CyberKnife involves a foam mesh mask that is custom-made for each patient, and snaps onto a neck pad - no bolts, no headache.

If SRS is in the cards for you, you might want to ask your onc about going on Tykerb (Lapatinib) - a dual kinase inhibitor that patients on Herceptin are eligible to take - its advantage is that it is a small molecule, and considered to be able to pass through the BBB (blood-brain barrier). It also goes to the CENTER of the cancer cells, rather than the outside membrane, as Herceptin does. I've been taking Tykerb, along with Herceptin, since July 1 of this year. I have experienced some side effects - diarrhea and an acne-like rash and itching, but if it works to prevent further brain mets from developing, I consider it well-worth the side effects.

Hoping that the brain MRI does not indicate bc brain mets, but if it does - about 25-30% of HER2neu+++ patients develop brain mets, and they are quite treatable.

(((hugs)))
Sandy in Silicon Valley

tousled1
10-20-2007, 09:01 AM
Debbie,

I developed a 5mm brain met only 3 months after my last Herceptin treatment. At first they thought it might just be somethng vascualr but sent me for an MRI to make sure - sure enough it was a brain met. I had CyberKnife procedure done and everything turned out fine. Try not to worry until you have the results of the MRI. You are in my prayers.

dhealey
10-20-2007, 10:57 AM
Sandy and Kate, Thank you for the info. Sandy you explained the procedures very well. It helps to know someone who has been there. Kate one of the places they saw on CT they think is vascular, my thinking is it is a met. Still haven't heard any results yet, but if these are mets I am ready to fight with all I've got. Thank you all again for your quick responses you have put me at ease even if this is the nasty cancer coming back. Bless you all!!!

Sheila
10-20-2007, 11:41 AM
Debbie
Are you on any meds now? Brenda is on Tykerb/Xeloda (both oral ) for brain mets and is having great response so far , with nor surgery....I am hoping the MRI shows it is just vascular....and nothing to worry about, but if it is mets, you are very lucky to have caught it early, and many on this board have been in the same spot and will walk with you on this joourney....you are in my prayers and sending a hug and healing thoughts your way.

StephN
10-20-2007, 11:48 AM
You will have checkups in the future where you get the same good news.
Wow, Debbie, I am REALLY impressed with the amount you and daughters raised for the Avon Walk. Great going!

Over the years we have had a few members of this board report getting small brain mets before or just after they were finished with adjuvent treatment. Not very many, but they were all treated and seem to be fine as far as we know. If you do have a small met or two, the prognosis is excellent for 3 and under with a radio surgery procedure (like 92% success rate).

I am almost three years post Gamma Knife for two mets. One was quite large in my cerebellum, but still within the limit to have Gamma Knife on it.
In the time since treatment there have been no more spots show up in my brain, and I have not taken anything for that which can cross the blood/brain barrier. These were isolated mets that sneaked in during my outbreak in my liver.

Most major metropolitan areas will have Gamma Knife and more are getting Cyberknife. You may have to check into what the various hospitals/universities near you have to offer and consult with more than one place. (I did that, but since the procedures were similar, I opted to stay in my main hospital group.)

My rad onc gave me good news yesterday that my MRI scan this week showed improvement in my previously treated areas and nothing new. He had been giving some bad news before he saw me and I could see his relief and pleasure in my continued good results. He said I should have hubby take me out to celebrate!

P.S. If you do a search for Gamma Knife and my name, you will find a detailed account of my experience. Patty Z also posted her details.

Lolly
10-20-2007, 01:17 PM
Debbie, just want you to know I'm thinking of you as you wait for the results.

<3 Lolly

Patb
10-20-2007, 02:20 PM
Debbie

I also posted about my bone scan which showed an activity at base of
scull and will have an MRI of the brain Monday night. Must be an open
one for me. I had the same questions you did. I hate the waiting for
the results. Best of luck with your test and praying you results will be
ok. I am also taking herceptin until the end of November.
patb

dhealey
10-20-2007, 02:51 PM
The only meds I am currently on are Herceptin every three weeks (only had 3 more to go) and aromasin. The hospital where my oncologist group is from does offer gamma knife. I live in Lexington, NC. We have many hospitals here with cutting edge treatment much to my relief (Duke, Chapel Hill, Wake Forrest. Steph I pray you have continued success with your treatment. Thank you all for your input.

lilyecuadorian
10-21-2007, 07:33 AM
Dear Debbie I was treat it with NOVALIS procedure and so far GOOD ..on carolina medical center ..that have the best Doctors ...I hear the Chapel hill have a good Doctors also ,,I think if you have some on your brain you are going to be Ok because you cath eary ....and like sister Kate (tousled1) said "the procedure is like walk on the park" that is very true ...