brain mets

02-20-2006, 12:36 PM

theank you all for you input on brain mets.
I am weaning off decadron 4 mgs, per day, now after 3 mgs., 2 mgs. for four days. Started wrb thursday and onc. tries to get me oxygen/hemoglobin booster sri efaproxin. Like I said, I have had really bad news lately, no doctor has given me hope except for the two that have not seen my mri. We had a appt. in LA and that was a big disappointment, very clinical and not at all hopeful. It was very stressful. I am up on stuff bt always waiting for novel or new news. you know around here they go by the book so it is reallty not thinking out of the box. why not ? i'm a human guinia pig anyway. what am i--afraid to die?
i am finding that my friends are a little scared and i don't want to "press" them into service yet again. they avoid me and i don't blame them--i used to avoid sick people too because it reminded me of my mortality. well, abour brain mets...lets get down to business and quit the feeling sorry thing...any news , encouragement. but mainly hard-core treatments are appreciated.

aquinis2000 · 02-20-2006, 07:57 PM

I'm sorry to hear about your bummer week. and your bad news. there is alot of info on this board about brain mets and treatments. Steph and Ester both have alot of knowadge. If you go to the toolbar you will see a tab for "search". use the dropdown arrow and type in brain mets. it will pull up hundreds of post on the topic. covering treatments, drugs, clinical trials, ect. I just know you will get some help from this. i can't help you anymore than telling you i will pray for you, that God gives you peace and wisdom to deal with this. keep in touch

Lolly · 02-20-2006, 07:57 PM

Hello, I just want to offer my encouragement to you and say there are several here who are treating them and several survivors so you will get some advice from these soon.

You are thoughtful of your friends, but remember they may be waiting for you to ask or just reach out as it's sometimes difficult to make the first move out of fear of not saying the right words...

I'm glad you're posting here, as we are here for you.

<3 Lolly

Annemarie · 02-20-2006, 10:18 PM

I have had single lesion brain mets 3 times. I have had bc no where else except for the brain mets. It is manageable. I was orginally diagnosed nearly 6 years ago and the brain mets came a little bit over 4 years ago. All I can say is I am still here!
Annemarie

Esther · 02-23-2006, 11:09 AM

Annemarie, that's great to hear, 4 years and going strong with Brain mets. What type of treatment are you doing to manage your brain mets?

al from Canada · 02-23-2006, 11:39 AM

There is trial with xeloda and tremodar and another with lapatinib. Other than that, it's pretty slim pickings. Good luck getting into the ALLOS trial

What you should know is that these mets are very treatable, far more so than a brain primary tumor. Christine has had WBR and that was over 8 years ago?? There are survivors. Don't take your cues from body language as that is most often misinterpreted.
Good luck,
Al

Kim in CA · 02-23-2006, 01:56 PM

Just wanted to send some encouragement your way. As a fellow brain met inductee, I know how helpful it is to be able to compare what others are doing. I don't have alot to add as far as experience goes (I just had a single met treated with GammaKnife last August) but wanted to offer my support and remind you, that when things get overwhelming all you can do is just keep putting one foot in front of the other and never quit fighting. We just have to keep it at bay until they find the drug that is going to work for us.

Hang in there, you can do this

Kim

Annemarie · 02-23-2006, 03:59 PM

I have had single lesions all three times. My lesions were 3cm, 5mm and 7mm. I have had 2 craniotomies the first time followed by WBR and Temodar. My last lesion was removed with gamma knife. I went back on Temodar and get Herceptin once every 3 weeks. I feel great, look fine, I am married, have a career and a baby boy (via surrogacy). So there is plenty of hope!
Warmest regards,
Annemarie