SRS machine is fixed, and numbness in her leg

Dr Chris Anker has called us daily with updates on the SRS X-ray machine, and we heard this morning it is fixed. Yay!!! We have an appointment today for MRIs: to map her brain for SRS treatment on Monday and Tuesday, and also her lumbar spine area.

This week Liz has had pain in her left hip, thigh, and knee, getting lower and somewhat stronger daily. She has stayed horizontal on the couch with her leg elevated to ease the pain, and she takes her morphine and ibuprofen for it too. We figured it was from her Zometa infusion Monday.

Then last night (Thurs) Liz noticed she couldn't feel the heating pad on a portion of her lower leg, just below the knee on the outer front. She said it feels like pins and needles around the numb area. We know numbness and tingling are signs of possible pressure on her spinal cord, so there was a flurry of emails and calls this morning. So today she will get an MRI of her lumbar spine area too, to see if there is something new there. Liz also said she felt a bit less pain over the last few days in her lower back. She thought maybe the wedge that was left of T11 disc finally collapsed and thus hurts less (and it could have moved toward the spinal cord too).

Liz slept in her back brace to help keep things straight. She will wear it more often now, I think. She has started the steroid again for swelling, and is off her BRAF drug today so she can do SRS treatments.

We feel so glad to hear her SRS treatment will happen soon, despite Dr Shrieve and Dr Anker being out of town next week. We are grateful for the support of so many!

SRS delayed - machine is broken

As I think I wrote before, the X-ray machine used for SRS treatments has been broken at Huntsman for over a week. They got a part from Germany on Friday and hoped it would be fixed by Monday. No such luck.

Liz went yesterday to do the SRS planning MRI at 2pm. Because Liz had no success Friday with the IV, we were asked to get the IV line in at Infusion, who sent us to the blood lab nurses, who asked for the doctor who ordered the line, and we waited a while. Then Dr Anker called and said not to do the MRI because the SRS machine is still down. He was apologetic. He suggested Liz gets back on the B-Raf drug and then we can do the SRS when the machine is back up.

I don't like having her go back on the study drug if they might get it working in a day or two, as she already was off it for 5 days. (Dr Ribas said 4-7 days off, before and after radiation.) I asked if she might get treated elsewhere sooner. He said she could go to IHC / IMC for treatment. That would start with a consult appointment, then their MRI, then they use the "halo" to hold you still. (My word; he said pins, which are screws that go into your head. I saw the metal halo frame on TV long ago.) When Liz heard this she said she wanted to wait for the Huntsman machine, so she can do it with the mask instead.

Liz's veins looked good because she drank a lot all day Sunday, and a nurse there said she could do her infusion of Zometa now instead of on Wed, saving her a trip later. We got the infusion and Liz was glad to be done with that. Now we just hope the machine will be up and running shortly because the longer we wait to get the brain tumors the more radiation it will take. They are very small now - the biggest was about 1/2cm x 1 cm on 5/5 - and we'd like them treated asap before they grow much.

So she took a half dose of her study drugs last night. We hope the machine will be fixed and she can quickly get treated with less time off drug again. It is a guessing game we don't like to play. We want her to benefit from study drugs and not miss taking them for long; we also want to minimize effects of radiation on her skin/scalp when she is treated. Please join us in praying for those who can fix the machine to do so promptly. Thanks.

Tracy