Being foolish tonight...

hannah68 · 06-28-2006, 06:29 AM

Dear All,
I am being foolish tonight, posting this for all to see..( by the way it's night time in Malaysia), but I have this urge to tell everyone that I am having a relapse. I am diagnosed with brain mets early this month. I got seizures and was admitted to the hospital. Did the Brain CT Scan, the result showed there are 2 lesions.Did the Bone Scan and CT Scan on other organs, NED. Underwent WBR, 20 GY, for 5 days.

Went to two different oncologist, both recommends Temodar and maybe Gamma Knife if the lesions are still there after finishing Temodar. Will continue herceptin because my husband and I strongly believe it is working for my other organs except unfortunately it didnt managed to break the BBB. We are mad because my usual Oncologist wants me to discontinue Herceptin because he doesnt believe it worked.
But we fought hard about taking Herceptin at his hospital and finally managed to convince him. I am taking Herceptin tomorrow and Temodar next week.
Enough foolishness from me. Wishing everybody good health too and take care.

Hannah68
D'xd in Feb 2005
Her2+++
Grade 1,
Stage 3,
(ER/PR-),Neoadjuvant AC, Mastectomy,15x RT,finishing a year Herceptin treatment in Sept 2006
Brain mets June 2006

Cathya · 06-28-2006, 06:35 AM

Hannah;

You are not being foolish at all!!! I totally agree with you about continuing to take herceptin......forever if you can ..... unless something better comes along. Are you going to try to get lapatinib? It cross the blood/brain barrier and I understand has some proven effectiveness against brain mets. Others will comment on treatment as I am not familiar but I would try to get the lapatinib. If you look around the site you will see that it is available now for you if you contact the company. All the very best......keep us informed of your progress. Be comforted by Christine and others who have not even had recurrences in 5 years or so. God bless.

Cathy

Lolly · 06-28-2006, 07:26 AM

Dear Hanna,

We are a family here, and sharing and supporting is what it's all about, so please don't feel foolish. Kudos for convincing your oncologist to continue Herceptin, as you are correct in believing it's keeping the rest of your body NED. Several members have the same situation, continuing Herceptin to remain NED in body while treating brain mets separately.

Temodor is promising, in fact PattyZ is treating multiple lesions with a combination of Temodor and Xeloda, which also is believed to cross the BBB. Hope she'll see this thread and respond, or you could post a question to her directly.

Have you considered going directly to Gamma Knife, then following with the chemo as a back-up? Don't even know if that would be standard protocol, but I would want to explore all options for hitting this recurrence hard and fast.

Many hugs to you and please keep us posted.

<3 Lolly

TriciaK · 06-28-2006, 10:15 AM

Dear Hannah, You are not being foolish! We are all on your side and praying for you! Hugs, Tricia

al from Canada · 06-28-2006, 03:58 PM

Hannah,
There is considerable evidence out their that WBR does blast large enough holes in the BBB to allow herceptin to pass through. That said, tykerb (lapatinib) does block HER2 in a different way than herceptin so I certainly wouldn't abandon the chase.
All the best,
Al

Esther · 06-29-2006, 09:32 AM

Dr. Black at Cedars-Sinai believes the BBB is there to protect the brain, and that once mets cancer cells have migrated there, the BBB is already leaky and able to allow some larger molecules through.

mamacze · 06-29-2006, 11:36 AM

Hannah,
What is foolish about telling your "family"?! If you can't tell us, well then, who can you tell?!
Good for you for hanging on to your Herceptin. There is plenty of brain mets experience on this board so make sure you do a search. Also, ask your oncologist about Tykerb or check out the ASCO web site on Tykerb and brain mets and other abstracts on brain mets.
Hang in there and be inspired by your sisters who are giving brain mets a run for their money.
Love Kim from CT
ps what are you doing in Maylasia?!

hannah68 · 06-29-2006, 10:23 PM

thanks everybody for responding to my post. I feel connected to all my cyber sisters and brothers. We feel and care for each other and that is what I need to get through this terrible journey..

Kim, I work and live in Malaysia, but I have been to the other side of the world during my younger days. I used to study in Quebec, Canada for few years back then. Love the snow but couldnt stand the cold weather....
Have a good summer now.
Lots of love and God Bless.