Brain mets

[Leigh]

Hi ladies, if you remember i've mentioned before that i have brain mets and was worried because i live in Belgium how i would get the treatment.Well thanks to info from here , i nagged at my doctors until they gave in about the gamma knife and so on.Anyway i started a radiotherapy called novalis.Has anyone heard of it?I have around 10 lesions 5 being about 2 cm.I will need 14 treatments in total.I had wbr last year and some shrank.I feel good that i'm doing something about them.I have to go back to Brussels tommorrow for my third treatment.Thankyou to you all and especialy to you Christine.
Hugs

[Kathy]

Anyone out there with a solitary brain met who underwent WBRT? I'm scheduled for gamma knife in the future and was wondering when the fatigue and weakness improved. Some days I can't seem to get the energy to do anything. I'm also experiencing some vision problems and was wondering if that was from the radiation. Its funny the radiation people tell you none of these things are from the radiation...cover your a..... thanks

[celina]

Kathy,
My sister had WBR 8 wks ago and it was extremely hard on her. She, too, was unbelievably tired and weak, unable to even get out of bed for days. Her vision was blurred and she felt quite dizzy. The good news is that she has recovered from it, and although she is now in the midst of chemo, most of the effects from radiation appear to be behind her..her vision is slowly improving as well and she has more energy. So....hang in there, I'm sure it will get better.
Celina

[Kathy]

Thank you so much. Sometimes just hearing others are going through the same thing helps to make it easier. God Bless you and her.

[Sue C]

i had solitary tumor and had it removed by surgery and then went through WBR. it was quite difficult for me. i was tired all the time and i mostly spent the time in bed, either resting or sleeping. it went away soon after the treatment ended. i hope you feel better soon.

[Kathie in New Jersey]

I had a 3 cn tumor removed from my Cerebellum and then underwent 10 days of WBR. The radiation made me very very tired and my vision was effected. It does eventually subside once treatment ceases. I did have residual ear problems with them popping and feeling full but has also gone away finally. Wish you well soon
Kathie

[Anonymous]

Hi Kathy I am sorry about your brain mets I will pray for you and wish you luck. Thanks for your reply to my post above for Herceptin early stage it was helpful too. Avril

[shannon]

My mom has been recently diagnosed with brain mets. The cancer is virtually at a standstill everywhere else in her body. She has 4 small areas on her brain and they are going to do radiation on her whole brain and a chemo drug for the brain. Has anyone here had brain mets and if so what has worked to keep them at bay after radiation is used?

Thanks for any input.

Shannon

[celina]

Hi Shanon,
My sister has brain mets..has completed WBR. There are a few ladies on this site who have/or will have gammaknife or cyberknife radiosurgery. Perhaps this is something she could consider at a later date if needed. Would you mind telling me if your mother is receiving chemo for her brain mets...if so, what is it she is taking?
I wish you and your mother well.
Celina

[Lisa]

Many women here have had brain mets, including Christine, the founder. I'm sure you'll hear from them. You mentioned her 4 tumors, but didn't mention the size. I just wonder why they're doing whole brain radiation (WBR) rather than gamma knife or cyberknife. If they can be used, they are less invasive with fewer side effects. You might ask her onc.

We'd be curious to know what type of chemo they'll be using, too, since most chemos do not cross the blood-brain barrier.

Thanks for helping your mom!

Love and light,

Lisa

[Christine]

Shannon,
I had both forms of Rad therapy. Initialy I had 3 small brain mets that were treated with Gamma-knfe stereotactic radio-surgery. Cyber-knife is a similar therapy, but has a moveable arm and can target difficult locations if necessary, After my 6 month follow-up MRI scan, where I recurred with 5-6 tiny mets in vaious locations, My Rad-Onc suggested I have WBR to make sure any more cells that were hiding were attacked before they can grow. It was a logigical plan, so I went ahead withit on a 20 day schedule daily with weekends off. I had a total of 4000 rads that really has worked for me so far. I was on Herceptin/Taxol at the same time and feel that the chemo was able to go through the Blood-brain barrier as the edema perferated the barrier during radiation. My Onc believes I should go for brain surveillance every 6 months for now, even though I haven't had a problem for 4 yrs. Gamma-knife or Cyber are wonderful and could be used at anytime in the future and will not damage the brain.
I have heard of other chemo's that are used for tumors, but no comments about the success rate has been reported so far.
I understand the platin salts are most aggressive and maybe your mom will be on one of them for a short course. Keep us posted.

Warmest Hugs to you and your lovely mother....

[shannon]

Celina,

She is receiving a drug called Temodar with her radiation. It is in a pill form.

Shannon

[Annemarie]

I had brain mets twice. Both times single lesions and did partial brain (against my Drs. advice). They said I may lose my hair permanently. I had lose my breast, my hair was growing back all of my friends were having babies and here I was being told not my hair will not come back. It may sound dumb. So I took this with Temodar. I got a reoccurance. Currently I am NED and trying to get Herceptin. My neurosurgeon said the literature for Temodar is great for glioblastnoma but not as effective for brain mets. He said a study showed it extended brain mets pts. lives several months. With glio pts. he has a few pts. two years out. He is estatic because he said average was about 7 months with glio and now that is not the case. He thinks it is a miracle drug but not as effective with mets. He is not opposed to it at all.

[Shannon]

Christine,

Thank you so much for your post! My mom and dad needed to hear some positive news and your story was perfect!

May God bless you and all of the other ladies fighting this disease with continued health!

Shannon