Gamma Knife and Herceptin

I had gamma knife for single brain met in early January. I also have edema. I have never gotten better. Horrific headaches and pressure still. However, I notice when the day after I take Herceptin, my headaches get worse. Have any of you with brain mets/Gamma Knife experpienced this? No one seems to know. Also, I have spoken to 3 radiation oncologist. They all tell me since I have edema, my syptoms will get worse before they get better, because the DNA is changing and the tumor is dying. Nothing to do with Herceptin. It has been 2 months since Gamma.They will do a brain MRI again in a month after 3 months since Gamma to see results. Those of you with brain mets and edema experience this? All they can do is put me on pain pills or decadron, which the neurosurgeon and I don't want to get because of the bad side effects it caused me. I pray that some of you will be able to help me with my questions. God bless you.

I have had both Gamma Knife and I get Herceptin every three weeks. The only thing that ever helped me was the decadron. I don't know what side effects you experienced but I was so afraid of having a stroke or a seizure. Decadron for me kept me wound up. I talked non-stop, could not sleep and lost a few pounds. I wish you luck and hope you feel better. Tomorrow I go for my three month MRI check up. I am so nervous.

[StephN]

Hi Hope -
Feel bad about your headaches, as I have not been cursed with them so far.
I DID suffer with the Decadrom for my inflammation, but am now off it and feeling better.
Do you think that a smaller dose of Decadron to get the edema down may be the only solution?? Is there another drug that does the same thing without such bad side effects??
Wish I had a better answer, but you will need to do something about the edema if it is contributing to headaches.

Have been taking my herceptin infusions every 3 weeks and this does not seem to have affected my Gamma Knife (or vice versa) outcome. Neither one bothered me to speak of.
Wish you well!

Hope, I started taking decadron in Feb, after experiencing the occasional dull headache and then soon after a head MRI indicating edema in the cerebullum. After taking the steroids for a month, the edema went away. Headaches also disappeared almost immediately.

I did have just one Gamma Knife back in Aug of last year. Tumor did shrink more than 50% over time, but grew back to almost the original size in Feb of this year. Was supposed to have brain surgery tmw, but based on today's head MRI, they are now saying maybe it is radiation damage, not a tumor, after all. So, surgery is indefinitely postponed / cancelled. Will know the answer in a month, after taking another MRI follow-up next month. Hopefully, the surgery is forever cancelled!

Anyway, they will be starting to taper me off decadron this week... YAY! I am getting weary of my wobbly knees & an appetite that is out of control!! Gotta lose those weight now!

Hope, you are in my thoughts & prayers. Please keep us posted.

Also on weekly Herceptin -- no side effects at all!

After failing an echo once in Jan of this year, I passed the next echo with flying colors, so I am back in the game!! :-)

[Isabelle]

Hi,

I am currently getting WBR for brain mets. They were not causing me any symptons but I have some edema so I had to go on decadron. I remember from getting it at chemo. that I react very strongly to this medicine. It makes me hyper and I can't sleep.

My radiation oncologist let me build up the week ahead slowly and I now take one 4mg. pills 2x a day. They wanted me to do 12 mg. I seem to be able tolerate it now, and also take something to sleep so I am doing OK.

If I start getting headaches from treatments, I may move up to another decadron pill.

I think the key is to taper on and off Decadron. It does give you relief from symptoms.

Make a plan with your healthcare providers to make it work for you. You need to get some relief! There are ways they can halp you.

Feel Better
Isabelle

Ann Mari, can I get a stroke or a seizure from the edema or the gamma knife?

Thanks a lot for all of your resoponses. Your probably right, I might have to go on Decadron again. Maybe, they can taper the dose. All I remember is last time I took it, I felt so hyper, couldn't sleep for 3 weeks and I felt physicaly terrible. I also landed in the hospital for 5 days. However, I don;t think it was from the decadron. Even though they never were able to pinpoint the cause. But after putting me on antibiotics, my fever wasgone. I must have had some kind of infection. The neurosurgeon doesn;t think to think edema is bad or can cause me major problems, but when I get these headaches in my temples and this pressure in my head, I just have to wonder. God bless you all! I'll keep you informed as to what happens. I start my radiation for my lung met for 3 weeks next Monday. Hope I don't get side effects from that. Please keep me in your thoughts and prayers.

[Alicia]

Hope,
I had gamma knife ( 9 tumors) in Jan and went back on decadron recently because I was having a lot of Nausea. I hated it when I was on it before... but I went on 2mg in the morning only and that has been enough to keep my nausea and headaches away.....i am still gaining a little weight but feel much better energy wise! sort of back to normal. If you can get results with a lower dose I found that to be the key!!!! Good Luck , alicia