What can I expect from brain rads?

[forher]

Hello,
I am new to the group. My husband posted for me a few days ago. I was just diagnosed as Stage 4, brain mets from breast cancer. It took us by surprise. I met with my onc and radiation doc and I have 4 brain lesions and will start high dose rads in a couple of weeks. I'm nervous about it and not sure what to expect. Will I still be able to work? How will the rads affect me? Will I feel sick or nauseous? Just looking for some words of support and experience. Thank you.

[catalina]

I saw on your husband's post you were having gamma knife. It is not bad, a bit of uncomfort during the procedure but very easily tolerated with little or no hair loss. She was back at work the next day at an elementary school.

My wife saw immediate benefits from the procedure. She had gamma knife for 6 tumors and it had no negative effect on her at all.

Take care and hang in there.

[forher]

Oh! Thank you so much for responding! I'm glad to hear that your wife is doing well. This is wonderful! The docs have me on dex but I don't think it's helping my headaches so I stopped taking it and I feel better. Weird, I know. But Ativan helps. Docs say that the tumors are small enough that I am probably asymptomatic, but like I said, I do have headaches. I must admit that my great fear is having a seizure. My other fear is WBR. I'm having another MRI of the brain done on Wed so that my mask/head gear can be made next week. My onc also said I might be eligible for tykerb. I asked her about herceptin since I'm stage 4 but she said "no herceptin" since my body is clear. Hmmm. I thought herceptin was continued if stage 4, but does it exclude me since I have brain mets?

[StephN]

Hello,
Sorry you have to join the Brain Mets Club! If you are having a mask made, it sounds like you are slated for cyberknife.
There is no mask for gamma knife, just a headframe that is fitted on the spot before the one-time treatment.

I had gamma knife on two tumors (one sizeable at 3cm). The dex kept me buzzing all during the time I had to take it. The day after my gamma knife I was driving down to the U of W to meet a member of this group who was in a vaccine trial. She was from Oregon, and we had met previously. She could see no difference in me after my treatment.

All the best for a complete and trouble-free result.

P.S. I was still on Herceptin when my brain mets appeared. And I stayed on it for another couple of years. Not sure what the standard of care is now for brain mets as first site of mets. Probably Rolepaul knows.

[forher]

Hi StephN,
Your signature history is very inspiring! It's so great to hear that you are NED and helping others. I asked my clinic today and they said that I'm scheduled for Stereotactic Radiation (SRS). What is the difference between SRS and cyberknife and gamma knife?

[Jackie07]

Hi,

Both GKRS and Cyber knife are a type of stereotactic radiosurgery:

http://neurosurgery.ucsf.edu/index.php/radiosurgery.html

Gamma knife has huge helmet looking machine containing 201 holes. The doctors 'map' the tumor with the holes and focus the beams on the tumor. This way, the radiation passing through the brain tissue is not as strong as the radiation destroying the tumor.

Cyber knife is one (much weaker) beam circulating in super fast speed around the brain (like 200 times per minute) to hit the tumor.

[embur102]

I had Gamma Knife in June, to one 2 cm area. The procedure and side effects were very manageable. Initially, I had a positive response, with tumor shrinking 50 %. One month later, tumor had grown twice the size. On steroids right now, will look at it again in two weeks to determine if we do surgery or not.

Monday, I also started chemo again (taxotere, herceptin, perjeta) for liver mets. If surgery is needed, will stop the chemo for the surgery, then start up again.

Sorry that you have to be in this group, but glad you found us....this is the best group of ladies I know :)