Brain met treatment w/ Xeloda/Temodar

MichelleMoon · 01-04-2007, 01:28 PM

Hi there,

As if stopping lung mets a few months ago wasn't enough display of my character

, now I need to beat back brain mets. I have a scattering of small lesions, the largest being 4 mm. Esther provided me an excellent overview of the radiation and surgery options. Although I haven't spoken directly with my doctor since finding this 2 days ago (argh!), the other oncologist said he would recommend WBR straight away.

Believe me, I don't want to mess around with these things, but is Xeloda/Temodar ever used as a first line treatment for brain mets? I know a few of you have gone this route after radiation.

I lurk very often and I'm amazed at the strength and knowledge of this group!

Michelle

Annemarie · 01-04-2007, 09:30 PM

Hi,
Sorry for your news. I have had brain mets 3 times. Twice tiny like yours. You would be an excellent candidate for gamma knife being it is so small. Then follows WBR. Tykerb will be out in Feb. which crosses the bbb. I do take Temodar because there is not a lot of options. The studies show it works well for primary brain tumors and not that impressive for brain mets.
Annemarie

Adriana Mangus · 01-05-2007, 11:12 PM

So sorry to hear about the brain mets. I worry so much about brain mets. I have a recurrence in 2003 to rt lung and was on navelbine + herceptin, I will start xeloda next week due to tumor growing back. I do not know about xeloda, but send a message to Stephan, she's been dealing with brain mets for awhile. Best whises for you. Take care.

Adriana Mangus · 01-05-2007, 11:19 PM

How did you find out you had mets to the brain? Also what does WBR mean?

MichelleMoon · 01-06-2007, 08:22 AM

I'm almost afraid to fess up about the brain met symptoms because I don't want to alarm all of you healthy people!

I began having mild intermittent headaches a couple months ago and initially blew it off as holiday tension. My oncologist ordered an MRI, more to appease me because he didn't seem concerned (I was staged in June). Well, wouldn't you know the MRI found 7 very small tumors. Neither my oncologist or the radiology oncologist believe these tumors caused headaches because I have no brain edema. The princess and the pea story comes to mind...

I'll be starting 15 rounds of WBR (whole brain radiation) next week. I'm hopeful this will take care of these.

Good health to you!

Sandy H · 01-06-2007, 08:52 AM

Michelle, I have a question. I see from your profile you are Her2- then why are you getting Herceptin???? It is for Her2+ patients. Is this your oncologist idea. I had a friend who's doc wanted to put her on Herceptin and hormones and she was negative for both. She went for a second opinion at Dana Farbar and was told no reason to take either she was negative. Her doctor said he felt it wouldn't do any harm for her to take these drugs it might help!!! Dana Farbar said no sense in putting any drugs not necessary in the body as they all have side effects. I hope I haven't opened up a can or worms here but I was just wondering. You may want to check this out. I am surprised your insurance will pay for it however, my friend's insurance was going to pay. Some things I don't understand with these insurances. Wishing you well and sorry to hear about your mets. hugs, Sandy

MichelleMoon · 01-06-2007, 08:56 AM

Hi Sandy,

I seem to be a unique case! I was triple negative upon my initial diagnosis in '99. My '06 lung mets had turned HER2+++, so that's why I'm on herceptin. This is why I encourage everyone to have their mets biopsied and retested. Maybe the length between my initial diagnosis and mets made this more possible?

Take care of you,

Annemarie · 01-06-2007, 08:26 PM

Each met gets biopsied and tested for hormone status, Her 2 status and other markers. It is not unheard of to have different status than the primary tumor. Mine were always the same as the primary.
Annemarie

chrisy · 01-06-2007, 08:56 PM

Michelle,
Have you talked with Christine Druther, the founder of this site? She was diagnosed with brain mets in I think 2001 and is not only a great advocate but a wealth of information in this area.

KathyA · 01-09-2007, 09:25 AM

Dear Michelle, don't know a thing about xeloda but I too found out about brain mets on Dec. 28, 2006. Today I have my sixth radiation (WBR) treatment. I am only having 10 rounds though. Thank God. I am finding them difficult except today is the mildest headache I've had. I have 12 lesions ranging from 2mm to 22mm. My onc also said that wbr was best because there are probably lesions that we can't see. I have blurred vision and some imbalances. I thought that I might have a lesion or two because of the symptoms but I sure was surprised with 12 even though they are small. I was diagnosed first in Feburaty 2003 and then mets May 2005. I have bone, liver, lung and now brain mets. What a trip. I've been on some kind of chemo every week for the past year and a half. The last two treatments Gemzar and Navelbine didn't do anything positive not even stable. However, and this is big, I don't feel badly, that is sickly. I am truely blessed. The radiation has for the first time, though, made me feel like I have Cancer. But only 5 more treatments counting today. Sure hope thing go well for you. I willbe praying for you and the rest of the crew on this site.

Love Kathy A

Ceesun · 01-09-2007, 05:17 PM

Good wishes to all, Ceesun