Well had results from stereo tactic radiosurgery on brain. Good news and not so good news. Original tumour has shrunk which is great but there is now another one and about 8 very small ones. Bummer! Recommended to have whole brain radiotherapy to get them all and prevent further from appearing. Bit anxious about this and side effects from whole brain radio.
Any comments from those who have had it would be grateful.
Hi Belinda, I was wondering how you were going. Sounds like you've got a lot on your plate at the moment. I hope things start to settle down for you soon. What chemo have they put you on now? I am having my CT on Tuesday and feeling pretty nervous about it for some reason. Just concerned that the thickening and mediastinal nodes haven't changed, but I guess I will find out soon enough.
Hoping things settle soon. Thinking of you.
Take care
Tracey
H Linda
Sorry about your crappy news - enough is enough I say!
I have had lung and mediastinal node mets for 6 years. In September I had a "large" brain tumour sugically removed from my right occipital lobe. I also have a small tumour centrally which wasn't touched. 6 weeks later I had 10 sessions (2 weeks) of WBRT to zap any nasties left around the surgery site or elsewhere and for the small tumour. I had an MRI and saw my neurosurgeon in early December. Luckily at this very early point the news was good with no residual at the craniotomy site, and the small tumour had shrunk. I don't have to go back for 6 months.
The WBRT was OK. I absolutely hated the mask that they made for me and clipped on to the machine for each treatment. I found it really claustrophobic. Different to the MRI but unpleasant. Each treatment is quite quick 5-10 mins and painless although I did end up with a slight burn at the top of my forehead. I also had a lot of nausea but drugs sorted that. I've also been very tired. The worst side effect personally was hairloss. My hair was 98% 0k after neurosurgery but 98 % not OK after WBRT. I lost nearly all my hair about 2 weeks after finishing WBRT, and have been left with a wide band like a mowhawk from front to back....sorry to say really, really ugly. even when I cut it back it stays thick and dark so there's no disguising it.
I started chemo for my lung mets only a couple of days after finishing the WBRT so my hair hasn't had much chance to grow back. I'm still very tired and nausea is causing problems.
I figure I have no choice with all this. As a friend on another forum has said recently. "I never learn to accept it; I learn to live with it". It's a pretty crappy journey we're on but at the moment I'm doing ok.
Take care Linda, I'll be thinking of you.
Belinda
