brain mets plan...T/X now & wait to do rads?

[hutchibk]

Thanks so much Patty. Your info is such a HUGE help. If you would, can you re-share you brain mets history here... I don't know where to find it.

How many times have you had targeted rads? which kind of procedures for rads have you used? did you take temodar/xeloda at the same time as the rads?

Yours sounds like a treatment plan I could get on board with... your response has put my mind at ease. did you get side effects w/ temodar?

How long did you do Navelbine/Herceptin on 02 and on what cycle?

Luckily, I don't feel bullied by my docs, but I do feel that they like their plan enough to push for it. I don't mind pushing back, they can take it. I just got an email from my med onc telling me that to answer all of the questions I posed last night - he would get writer's cramp - so he asked to see me in office on Friday. (he is a fantastic man and quite the comedian, so we do have a lot of laughs through it all). I want to take him some alternate plans and approaches and see what he thinks. I will force him to expand the rubberband around his head a little!

Can I email with you about this? Thanks!

[pattyz]

Sorry for the length of this, I tried to be 'concise', but no luck!

Sept. 2002: dx'd brain mets. Opted for focalized tx, SRS Linear Accelerator - 'screwed on' headframe the worst of it. All day with frame on for about an hr on table. Totally successful. 1.5cm and 6mm lesions.

Scanned about every two months...

March '03 dx'd with 14 new brain mets, no symptoms, all small: 8mm down to 3mm. Fought tooth and nail, but had the support of my partner to keep refusing WBR when confronted by dire warning and angry rad onc.

? April '03: 4 brain mets, including 3mm on brainstem/pons treated with 2nd SRS. Successful, but needed a weeks worth of low dose decadron.

?July '03: 4 more brain mets done successfully with 3rd SRS procedure.

Dec. '03: 'Final' six mets treated in two CyberKnife procedures two days apart. These were all in my cerrebellum. I lost hair in tx'd areas, but it fully grew back in 'normal' time. The CyberKnife was also successful and I much preferred it. No screwed on headframe, but a very tight form fitted face mask.

I did 'need' a low dose of dec for a week after each procedure. None treated have recurred or become necrotic.

Back then, I didn't have the information to ASK for any added drug concurrent with tx's. So, no, I didn't have X or T along with rads.

May '05: MRi showed new 8 lesions. Nearly 1-1/2 yrs after last radiation.

My onc created a schedule of dosing just for me with the Xeloda/Temodar. Shortly afterwards, I found the small study done on bc brain mets using these two drugs with some small successes. My schedule: 2000mg Xeloda per day tot. x 14das. Along with 250mg Temodar per day x 7 days. two weeks off.

I have had no side effects other than fatigue and complicated constipation. Have missed my Zofran ONCE before taking the Temodar... never to be repeated!!! vomiting in wee hrs not fun at all......

And now, the reason for my current tx with my latest brain mets: the focalized rads are cumulative. All but two of these 8 are in my cerrebellum (one again on brainstem, one frontal lobe)... any more focalized rads to the area carry high risk of permanent damage.

yet......... I was once again advised to do WBR. sigh..... so you see, it has been one fight after another, yet my medical onc is totally 'on board' with my decisions. He likes being able to use me as encouragement to others )

Right before my first brain mets dx, I was dx'd with mediastinal nodal mets, spots on lung and pelvis. Following my initial rads tx for the brain, I became NED in body after a short time on Navelbine/Herceptin. Knock wood, still NED body.

If there is anything else I may be able to help you with, ofcourse! you can email me...

with hugs,
patty

[Joy]

love, prayers, courage and good decision-making mojo! I think Patty is such a great resource for all of us and has offered brilliant advice and great support. Please continue to share all of your thoughts and decisions and then how it is all working, okay?

[StephN]

Hi - Brain mets are scary, but we must get a grip.
I don't see why you have not sought out a specialized center for Gamma Knife or Cyberknife. With these radiosurgery techniques there should be NO worry about damage to surrounding tissue. Gamma Knife is accurate to within ONE MILLIMETER of the target!

In my case I had Leksell Gamma Knife done on two tumors in my brain. The largest was 3cm located behind my left ear in cerebellum. The smaller one was about 1/2 cm or 5mm and located in my superior vermis. They both have been treated successfully - I had no new spots show up since initial treatment in Jan of 2005.

There is a ton of info on this procedure and the research shows it is very successful when the patient has THREE OR LESS tumors. Get a cutting edge specialist and move on.

On the day of the GK procedure they do a special MRI with a finer cut and if there are any new spots that show they will put those into the treatment plan as well. Take advantage of the latest equipment and leave the WBR for another time if needed.

[hutchibk]

I hadn't sought that out yet because up until yesterday we were leaning towards Linac targeted rads on the 3 spots only. I was supposed to start that yesteday afternoon... but then yesterday morning the med onc and rads onc reviewed again and both had started leaning more toward WBR again late last week after seeing my PET from last Weds...

So I told them yesterday that I wasn't going to be there for WBR in the afternoon, I had a lot more questions that needed answering and needed to do alot more research. I plan to go to MD Anderson in the next couple of weeks to see what their plan would be. I don't want to do WBR right now, I want to try the wack-a-mole method first. LOL