Direction for Brain Mets treatments!

Okay experts. I know we do not do medical advise, but I need to know how much and what direction to push!

I just received a call from Cyndi’s Oncologist with the results of her brain MRI. There are “several� lesions approximately 6 to 10 with the largest about one cm. The onc. does NOT think she will be a CyberKnife or Gamma Knife candidate. His reasoning is that if we can see these lesions, that many more are probably not yet visible. The doc’s preliminary advice is to do a WBR in order to eliminate all the small (not yet visible) lesions as well as the lesions we know about.

I think we need to know more about numbers of lesions treatable with Stereotactic Radiation Procedures before we discuss options with the radiation Oncologist. CyberKnife is only available in Dallas at this time, Gamma is available in several more locations. We are about 400 miles from Dallas.

Thanks in advance for ALL you wonderful ladies (and gents) who have been there and are willing to share your experiences and knowledge. Special thanks to those who just lift Cyndi in a short prayer. You guys are great!

God Bless You,
ron

Ron,

This has been my personal experience. I have been able to get co-operation from docs who have LISTENED to me.

I have had as many as 15 visiable brain mets. I have been nearly asymptomatic. Since I have refused WBR since first dx in Sept. 02, I opted to have the four largest treated. One on brain stem. Then watch the remaining tumors with 2 month MRI's.

I had an additional four treated six months later still leaving the smaller ones.

Finally got a referral to our new CyberKnife Center where I had the remaining (turned out to be six) treated with CK in two treatments a few days apart.

Was originally dx'd with two met tumors. A 1.5cm and 6mm. Was told then, as you have been, that not doing WBR would probably show up more eventually. It took me 6 mos.

So, I have had three SRS procedures (like GK) and two CyberKnife treatments treating a total of 16 brain mets. With latest MRI showing no new ones.

Again, this has been my experience, with my personal health history. I have been lucky not to have 'more than can be counted' appear to this point.

I tend to get upset when friends of mine who have had the WBR end up with more brain mets anyway. Then desperate for treatment. Not to mention the side effects.

Best of luck to you both with your treatment decisions and in finding compassionate care givers.
pattyz

patty, I understand that you opted not to have WBR..but aren't many having WBR followed by RSR if needed? (particularly when there are several leisons? We are trying to figure all of this out too!!
Ron, my sister was recently diagnosed with brain mets, however it sounds like she may have had more than your wife.."clusters of small tumors". She has completed WBR. When we get the MRI results, we will see about a gammaknife boost for persistent tumors.

Dear Ron

While everyone hates to hear these words, brain mets, I am repeatedly told that brain mets are very treatable and probably will not be the ultimate cause of my demise. ( My lung mets are much worse .)

When I went looking at several institutions, I was told the standard line was anything over 4-5 lesions should be treated with whole brain FOLLOWED by stereotactic for any large lesions or lesions that remain on subsequent scans. Apparently, with brain mets they do scans that have a higher resolution to look for every possible met. Some places use double contrast but most places use 2 1/2 to 3 mm cuts instead of the standard 5 mm cuts. I was told that when these higher resolution scans are done 30% of the time more lesions are found.

That said, I also asked my neurosurgeon about not having whole brain but having only stereotactic. He ( unlike the rad onc who is very conservative ) was willing to consider this and even said that if there were lesions that he could remove if stereotactics didn't work, he would consider that. He was willing to work with me.

There is data that is going to be presented at ASCO this week on whole brain versus whole brain plus stereotactics ( better ) but I am not sure if there will be data comparing whole brain to stereotactic alone. Christine can surely fill you in on this.

As for the mechanism of delivery, gamma versus cyberknife versus linac, I was told there is NO data showing one is better than the other. The advantage to cyberknife is that you don't have to have the halo bolted to your head but I didn't find this so bad. Cyberknife might be better for lesions near other vital structures like the optic nerves. If you opt of LINAC though, you want to have a machine that is dedicated for brain lesions. Most LINAC machines are used all day for regular radition to other body parts, then they add a special attachement to convert to a stereotactic machine for brain mets and it is thought that this is not as accurate. I had my brain mets done on a dedicated LINAC by Novalis called Brain Lab. ( I wasn't willing to travel for the cyberknife, I just didn't feel up to it. )

Someone on the list also posted the fact that a compound called RSR 13 by Allos pharmaceuticals might have just gotten conditional FDA approval. It has been studied with whole brain and brain mets and while it didn't help any other kind of brain mets, it did improve survival with breast cancer brain mets.

So it seems like your decision is
1) Whole brain versus whole brain plus stereotactic radiosurgery. Most facilities will say no to stereotactic alone but if you are adamantly opposed to whole brain, you will find someone willing to work with you, but you will have to seek them out. By the way, usually you meet with both the rad onc and the neurosurgeon because the neurosurgeon puts the halo on.

2) If you opt for SRS, then you have the choice of gamma, cyber or LINAC preferably a dedicated machine. Other than no halo with a cyberknife, there is no survival advantage.

3) The possibility of adding RSR 13 if you opt for whole brain.

4) You need high resolution MRI's to look for all mets.

I know you and Cindy must be in shock right now, but with close monitoring and follow up, brain mets are very treatable!

One last thing, you have to be careful that whatever chemo she is on is not a radiosensitizer. I am on gemzar and apparently it is a strong radiosensitizer so they had to hold it a couple of weeks. There are also some studies that suggest that xeloda may be good for brain mets as it crosses the blood brain barrier. I was told that this barrier is leaky after radiation for a bit so I made sure I started my xeloda right after rads to get that effect. But I remember coming across several studies which I could fax to you on xeloda and brain mets.

Wishing you and Cindy the best in your search. It is daunting but I know you both will make the right decision.

Hugs,
Rosie