[VirginiaGirl]

Hi Pam & everybody,
I was dx with brain mets end of Jan, immediately started wbr, and just now am getting around to writing everyone. First, thank you for all the supportive responses I received, and my apologies for not writing sooner. Besides tx, I have had tons of visits from family and friends, trying to deal with everyone's feelings about the brain mets and get some things in order. It's been incredibly busy.

I found wbr to be harder than I thought, and worse in some respects than chemo. Initially they thought I had 11 spots, but a follow-up mri 2 wks after finishing rads actually was written more clearly and showed I had more like 16 spots. The wbr results are some shrinkage in all spots, and significantly reduced swelling around the largest tumor, which was about 2 cm and went down a little bit - this was the one was causing some symptoms like tension-type headaches and serious risk of seizure. The rest of the spots are less than a cm. I guess now I'm "stable." I started tykerb/herceptin 2 weeks ago, we're going to give that a chance to work on my systemic issues and hope it continues to shrink the brain mets. We are looking into whether I can get targeted rads to the largest tumors later on. I am not in a hurry to do any more rads to my brain.

Onc had immediately started me on 12 mg decadron to get swelling down, and that was very hard to manage. I am not a big person to start with and tend to get over-medicated anyway and hate steroids. i was ravenous, swelled up fast, still having some insomnia, it was awful. Steroids also mess with your blood sugar, and I am having issues with that as well. I have been down to 4 mg a day for the past 2 weeks, which is manageable, but I was hoping to be off it all together by now.

By the second week of rads I had serious short-term memory issues, moments of almost panic when I couldn't remember things, started having to write everything down. The docs said any cognitive dysfunction/memory issues I was experiencing at the time would not get better and that freaked me out! I was supposed to get 14 txs, but realized toward the end I was getting more than the standard dose (3500 units vs 3000) and the only reason I got for this (from a nurse) was that the doc probably thought since i'm younger (45) I could handle more rads. I disagree (I think being younger and with a 13-year-old daughter I need all the brain cells I can keep!) and skipped the last one. But I have found the memory issues have improved and it's not nearly as bad as it was when I was in the middle and end of treatment, it's been a month since rads ended. I was also light-headed a lot, found I'd get dizzy pretty easily if I was turning around a lot, like trying to grocery shop or cook dinner. I was able to do stuff like that, things around the house, etc. but some days it was exhausting, too. This is the first time since my initial surgeries 6 years ago that i have been unable to work at all during treatment, and frankly don't know how I could work with the memory issues anyway. I am looking now at going on disability so I can stay home and take care of my family.

Anyway, complicating all of this is that a couple viruses swept through my house the first week I was doing rads, and while I thought I'd escaped the worst of it, I have now been on two different antibiotics, first for bronchitis, now finishing up on one for some pneumonia in my left lung they found by ct scan last week. These have had their own set of side effects that have made it more difficult to determine what is causing what. I am finishing the last antibiotic today and plan to start the weaning schedule my onc & I came up with a while ago. He said weaning off steroids have their own set of side effects too as it does mess with your hormones.

The docs didn't "officially" remove my ability to drive, but did say it would be months before I could since I had a greater risk of seizure than the "normal" brain. I did not want to drive at all anyway while I was getting rads and felt this way. I was often light-headed, sometimes nauseas. I do feel now like I can drive short distances during the day, like up to the grocery store, but am still hesitant to drive at night. Am hopeful to get off all steroids by next week and see how I am feeling then.

I was due to start the expanded-access T-DM1 trial (scans for trial how we found brain mets), but was told that with brain mets I have to have completed tx & be off all steroids for at least 30 days (unless steroids are being used for some other health issue, they will consider) before I can participate. Since trial site is an hour drive away, we're doing the tykerb/herceptin, a new combo for me, and when that stops responding move into the T-DM1 trial. I had not heard that the t-dm1 crosses the b-b barrier, anyone have more info on that?

Hope to hear from others how you're treatments are going!

Peace and Blessings