WBR questions/concerns

[JenK]

Hi,

I am SueF2's daughter Jennifer. After her brain mets diagnosis last Wednesday of 4 small spots and one larger (but not large) one on the cerebellum, she started whole brain radiation (WBR) Friday. By Sunday she was in the hospital. A couple hours after radiation on Friday she began vomiting and was very dizzy. She was like this all weekend and couldn't keep anything down. Sunday afternoon my brother had her taken to the hospital. This reaction is apparantly not an unusual side effect of WBR, especially when targeting the cerebellum. Can anyone confirm this? Without any treatments over the weekend she was a bit better this morning, but had the same bad reaction after treatment today. My brother says she is basically incoherent. The doctor says he wants to continue WBR, but keep her in the hospital (I hope) while they do (until next Thursday, after 10 treatments). I have not talked to a doctor personally, as I am in Connecticut. I will be going down this weekend. I am wondering if continuing is wise or if other options (sterotactic, Gamma/Cyber Knife) should be looked at. Of course, reading on the Internet I think I know more than the doctor, but I hate seeing my mom go through all this pain. I guess I am just looking for reassurance that the doctor knows what he's doing and that things will improve by the end of next week. I hope to talk to her onc tomorrow, maybe the radiologist too. Has anyone had success with WBR being the first course of treatment for brain mets? Thanks for listening.

[Carla]

I had 20 treatments of WBR in Dec-Jan. My lesions were primarily in the cerebellum also. I never had any problems that you describe. A couple of times I got bad headaches, but I took pain medicine and phenergan (spelling?) for nausea. I have had more side effects since the WBR treatments have stopped. I hope the dr.s can get your mom's situation under control. Wishing you the best-
Carla

[pattyz]

I would encourage you, your mom, to get a second or third opinion. I do not think it is too late to stop the WBR and get a consultation to have one of the other focal radiation treatment procedures done.

Her doctor sounds determined to continue with the WBR no matter how ill your mom becomes. I have gone head to head with my rad onc about this, and continue to refuse the WBR, opting instead for five stereotactic procedures treating a total of 16 tumors. Six tumors in two back to back sessions of CyberKnife.

Hoping and praying your mom will get some compassionate forward looking help.

pattyz

[Patty D]

I had WBR last summer for 6 tumors- Had 15 treatments- daily for 3 weeks- It got rid of 3 - I am now having cyberknife for the remaining 3-which are small. I was tired during the WBR and on Decadron which is a steroid to help reduce swelling etc. That made my appetite increase and I could not sleep very well. I am still on it and hope to go off it after the yberknife.

[Sue C]

when i had WBR, i had a terrible headache and couldn't stop throwing up the first day. that was cured by taking decadron. my doc said it comes from swelling of the brain. After that I didn't experience that again. maybe you should ask your mom's doctor about the steroid (decadron)