Hi everyone:
I had my first WBR treatment today, the first of 20. Christine told me about a drug specifically for b/c mets to brain that has been in a phase III clinical trial and has now been fast-tracked to the FDA. The drug apparently greatly enhances WBR. The problem is that the drug is now unavailable. A dr.'s office in Dallas was a part of the clinical trial, but it's now closed. The word is that they are not releasing the drug even on a "compassionate" basis. I found out that they give an infusion of the drug 10 times--about half of my prescribed 20 treatments. I am praying that this drug will be available to me soon. Also, I hope to feel better soon. My head hurts quite a bit. Does anyone have any predictions for feeling better? (or worse, as the case may be). I'm also lethargic and sleepy.
Carla

Hi Carla

It's me Jen again. I finished WBR about 8 weeks ago and I hate to tell you that I am just now feeling like my old self. I am still weak and not back into shape, but many things have improved.
My onc told me that while on the Dexamethasone or whatever steroid you are on is causing most of the symptoms. Doubled with the radiation, you will feel lots of things all of which are normal.
Remember you might feel lousy but that stuff is in there working, killing those nasty tumors. Take Prevacid for your tummy, sleep when you can and make sure to move around as much as possible to keep blood flowing and help healing.
If you have any specific questions you can e-mail me--I had every side effect under the sun. There is a light at the end of the tunnel.
Don't be afrain to ask for help--but remember this is not killing you, it is going to bring you one step closer to NED!!! Focus on that and keep up your spirits whatever way you can.

I will keep you in my prayers and keep fighting

Love hugs and prayers Jen

Thanks Jennifer. I had the 2nd treatment today. I've got a pretty bad headache all the time, and it gets worse at night. Hopefully, I'll have some relief soon. I'm so discouraged, but when I read words of you and others who've been through this and are on the other side, I continue to have faith that I can overcome this.
Carla

Were you operated on also? I had a craniotomy to have a 3 cn tumor removed and then had WBR. A lot of the symptoms are coming from the steroids. You must take them to keep the swelling down. Just take it slow and easy and you will be better than ever in a few months. Hugs,
Kathie