Recent brain mets help
 

My daughter was recently diagnosed with brain mets and I am at a loss - not to mention devastated! She has already been through so much. Can anyone offer suggestions with how she can deal with all of the side affects from this horrible diagnosis and what to expect going forward? She is currently undergoing whole brain radiation and they say cyber knife is not an option due to the number of mets. She has liver (2) and bone mets (1) which are stable at this time and also gets Herceptin every 3 weeks. She is also on decadron. Would like to hear from anyone going or who has gone through this. Thank you all.

Re: Recent brain mets help
 

Dear Joyce,
I am so sorry to hear that your daughter has to battle this frustratingly difficult disease.

While I have not had brain mets, I do chat with a woman at my Herceptin session who successfully went through whole brain radiation and is doing quite well. I've known her since the beginning of my treatment, so it's been at least 3 years since her WBR treatment.

Honestly...it sounds like it was a challenge, but she came out the other side is doing well. I understand the steroids (decadron) is one of the biggest challenges. Appears it is a necessary evil but required a lengthy transition off the steroids. I believe Kate took about 3 months off of work, but has since returned to her job and is a couple years from retirement.

Kate is a wonderful, caring person and I know would be willing to talk to you or your daughter. If you are interested, PM me with your contact information and I will try to get a hold of Kate if you'd like.

Many on this site have said this journey is a long distance event, not a sprint. Sometimes it is a matter of putting one foot in front of the other, even when it doesn't seem possible. But...soon the clouds part and you find you've survived.

Love....Lori

Re: Recent brain mets help
 

Thanks for the words of encouragement. Hope others will respond also.

Re: Recent brain mets help
 

How to I send a PM please?

Re: Recent brain mets help
 

Joyce,

At the top of the tool bar there is an option for "members list".

Click on the members list selection. I believe another bar appears with the letters of the alphabet. Select "L" for Lori R.

I am on about page 8. By Lori R you will see an option of send a PM. Type your info and hit enter. I will receive an e-mail, internal to the board.

Unfortunately, my next appt. for Herceptin is a couple of weeks away. I can call my onc's office and see if they can contact Kate to let her know I would like to get a hold of her. (of course, they won't give me her contact details)

We'll talk soon!!! Hang in there....Lori

Re: Recent brain mets help
 

Sorry this is in your life now.

Especially hard for mothers to see their daughters stricken.

I have not had whole brain rads, just Gamma Knife since I had only two brain mets. I have known several women who went the whole brain route. Most did very well and were able to drive and function near to normally once they were weaned off the very nasty decadron.

I also had to take decadron, but not for very long. However, it was very hard on me, and sapped the strength in my legs.

All the best for a good outcome for your daughter. Great news that her other spots are small and stable. There are several new treatments either out or on the way that should benefit her and hopefully get her in full remission.

Re: Recent brain mets help
 

Thank you for your response. Hoping to hear more from others who have had wbr and/or are taking decadron. Wishing the best for you!

Re: Recent brain mets help
 

Joyce,
I've had brain mets in June 2008. Had craniotomy to remove the tumor 1.2cm I think if I remember it correctly. The surgery was a success (aug.2008) then had 20 WBRT one month after the surgery. My chemo was put on hold until WBR is finish.
All my Brain MRI (every 3 months) since the surgery and wbr shows no recurrence.
I'll keep you and your daughter in my prayers. Pls. keep us updated.
Gemma

Re: Recent brain mets help
 

Wow you sure have had a lot to handle. It must be so difficult for you. I pray for good news for you and thank you for your post! Your post gives me some hope!