Brain Mets

[marym]

I met with my radiation oncologist who recommends WBR. He felt that I had 12 months between the initial radio surgery and the need for a second surgery. Then, between the 2nd surgey and 4 months, none and one month later 3 new mets. From that he perceives the pattern of the disease to have changed.

I said this was a data point, not a pattern (although I know he has experience to consider). I feel well and have no symptoms. I work and do all that I did before my diagnosis. I told him based upon that I wouldn't even consider WBR unless I had a general change in how I felt or symptoms that forced the decision on me.

We agreed to do another MRI in a few weeks and see if any new mets have developed. He will also meet with the nuerosurgeons and see if they agree with radio surgery. (I think unless there are lots of mets, they will agree.) Anyway, I asked that as a second choice, we should look at what chemo options may be available. So he will also pursue that as well.

I wonder if symptoms can come upon you like overnight? Or is there some leading up to a change?

Has anyone had experience with a chemo for brain mets?

Has anyone had cyberknife treatment that was more than 5 mets and is there a limit to the frequency,

(with allowance for swelling, healing ,etc.?

I would like to hear peoples experience, thoughts on this, or any other information you think would be valuable to me.

Thanks.

Mary

[Nick C]

Second opinion I think is key here. If you have 3 mets I would think a targeted radiation would still be an option...so seek out that opinion. And you are feeling good, so again, second opinon.

Anyway, I asked that as a second choice, we should look at what chemo options may be available. So he will also pursue that as well.

Chemo (I'm not medical, just going on what I learned with Mom) does not pass the blood brain barrier. So Chemo shouldn't be an option for brain mets...let me know if the Dr says otherwise.

I wonder if symptoms can come upon you like overnight? Or is there some leading up to a change?

Mom's changes were gradual in that her motor skills weren't quite right for a couple of months prompting her to find out what was wrong.

Has anyone had experience with a chemo for brain mets?

Again, this doesn't sound right to me.

Has anyone had cyberknife treatment that was more than 5 mets and is there a limit to the frequency,

(with allowance for swelling, healing ,etc.?

Opinions vary depending on the doctor actually.

One other point, I know you said no WBR, and I would support any decision, but I would ask what the impact of the success of the treatment would be to start after symptoms vs. earlier. I always got the general feel the earlier the treatment the better the success. I would want you to weigh that.

I'll pray for your doctors to be wise and your decisions to bring you comfort!

[Don]

Iwould hope Gamma Knife couldd be used before WBR. It worked on me but I had only one tumor. But I do remember the doc saying he would do up to 8 mets at a time.

God Bless

Don

[john]

I am guessing that gamma or cyber could be used for 3 mets, though it might depend where they are located.

Some chemos do seem to pass the blood-brain-barrier.

Topotecan is supposed to be one.

There is a fairly new drug called Temodar temozolomide that is used for mets.

There are also radiosensitizers. I think one is RSR13? That are used to make the tumors more sensitive to the radiation.

[karen335]

Mary,

Go to: cyberknifesupport.org/forum

There sre real doctors there affiliated with Gammaknife AND Cyberknife. They WILL answer questions very promptly. In fact one os the doctors is from Florida. That is where Trish MIller's husband was treated for either 22 or 44 brain mets...

Hugs and prayers,

Karen

[pammie]

Had my fourth brain tumor in a year zappped last Friday. Doing well at this point. The group of oncs we see discuss case by case. My main onc is interested in me doing WBR but the others have not wanted to do that yet. The neurosurgeon said if there was a "flurry of activity" we might consider it. I asked him to define flurry of activity. He said four mets popping up in a short amount of time. It apppears people seem to tolerate gamma and cyberknife quite well if the swelling and necrosis can be controlled. Lubbbock is getting a gammma knife installed this month (Dec) so we are very excited about that development. Seems we are so very very blessed in this country. We don't have to wait for months for treatment, testing or surgery. We all have struggles in this world but the blessings from God are too many to count. pammie

[Tracey Huguley]

Mary,

I will be praying for you...for wisdom....for the best possible outcome....

Love,

Tracey Huguley

[Cheryl Ferguson]

Mary, I had WBR back in Jan. of '05 and my Brain MRI's have all been stable since. Like John said, My onc chose to use Termador as a chemo with the WBR. My symptoms came overnight with the loss off hearing in my right ear(temporary). Once you do WBR, you cannot do it again. I still have the option for steriotactic or gamma if the need arises. Hope this helps.

Cheryl