Brain mets back

[Mickey]

In Dec. I had gamma knife on one 5mm met. It went away and my next two MRI's were clear. This time not so good. Multiple mets all over brain. Largest one only 9mm. I start WBR tomorrow, low dose only 15 times. Any info or expectations would be appreciated. I call the Rad. Onc. the "cancer zapper" and he feels like some star wars charactor now.
Thanks,
Mickey

[imported_Joe]

Mickey,
Your experience is not uncommon. My wife Christine first had Gamma Knife in August of 1999 and a follow up MRI showed numerous mets the following spring.
She had WBR, but needed another Gamma Knife in October 2002.

There has been no recurrence since.

Are you taking Herceptin? Latest studies have shown a much longer time to recurrence if you are HER2 and on Herceptin at the time of radiation.

Did your rad/onc suggest that you enter Allos' ENRICH trial? A drug called EFAPROXYN is given prior to radiation and evidence has shown that the radiation is more effective.

Warmest Regards
Joe

[Mickey]

Thanks, Joe for the encouragement. I am on Herceptin and did not know about efaproxyn. I will ask him tomorrow. Is this a clinical trial and can only be received in certain places?
Mickey

[StephN]

Sorry to hear about the return and multiplying of the brain mets. You had only one little one, so things looked pretty good for you.
Can't remember, but are you NED otherwise?
Seems like you are also fighting some active cancer as well. The chances are better for no recurrence in the brain if we are NED otherwise. I sure hope that will be the case for me. But, if not, I know what to expect.

All best wishes for success with the WBR.

[Mickey]

Yes, Steph, I am NED otherwise. However I have just recently gotten there.

[Velva]

I'm sorry to hear of the brain mets return. I had a craniotomy in Nov. /04, f/u scans have been clear, last one April 04, 2005. I have been having some dull headaches for about 2 wks, so my onc & neurosurgeon recommended an MRI, which I'll have later today. It's always a challenge with this disease. Thanks to Christine & Joe for this website to help navigate/support us with breast ca mets. I hope your tx is speedy & permanent. Prayers, Velva

[StephN]

Hi Velva -
Sure hope you headaches are due to another source than brain mets return! Esp. since the April MRI seems to have been clear.

There is one caveat that I keep in mind when I am having my followup brain MRIs now. That is that those screening MRIs don't use as fine a cut as is possible. So, some very tiny spots can be missed and then grow enough in the 3 or so months before the next MRI to be seen the next time. Guess this is the reason the docs want to "take a look" so often once we have been shown to have the brain mets.
I, for one, will let them!

[Velva]

Steph N., Thanks, I'll post when I get the MRI results tomorrow. Velva

[Lisa]

Mickey,

So sorry to hear about your recurrence. I wish I could say it was unusual, but it's not.

I went through 21 days of WBR. What I experienced:

First 2 weeks, no side effect. Week 3 started big-time fatigue. Hair loss, too. Also change in vision, that they SWEAR isn't related, but I'm not so sure. The radiation does, after all, hit the optic nerve.

The fatigue can last months. If you can, and that's a big IF, try to do some type of exercise to overcome the fatigue. The hair loss is not like chemo, where it comes back quickly. It may come back partially, or very thin, or even not at all. My husband calls my few little "hairs", old man's chest hair. I call it lint. And I finished my WBR last Sept!

I also got sort of depressed. I've seen this with other women going through WBR, but I'm sure it doesn't hit everyone the same.

Check into supplements and dietary changes that help with radiation. I can't remember any at the moment, other than miso soup, but I know others on this site can help.

Wish I could give you better news. Only that with WBR, you'll have a good chance of no recurrence. And if you're not getting the maximum rads, you can still have gamma/cyberknife later if needed.

Keep fighting the fight.

Love and light,

Lisa

[Mickey]

Thanks, Lisa. I appreciate knowing what to expect. I had my first treatment yesterday. I have a headache today and slight nausea. 1 down, 14 to go.
Mickey