On 3/31/2007
Petula wrote:
On 3/6/2007
Dally k wrote:
my mom has had mets to lung and brain. Left kidney removed.
brain mets are inoperable. They are two small ones we see at the tip top but the neurosurgeon does not think it makes sense to put her through surgery becasue he says she may have 20 mets but they may not show up on the CT. And yea, he can take out two but not far down the road, more will most likly show up.
She's on sutent. After 2nd cycle they will do more scans. SHe's doing really well. Working on her cook book again which is a good sign.
if anyone has had experience with mets to the brain, please tell me your story...
Dally
Dally, sorry to hear about your mom. I know exactly what you are going through as my mom (63 yrs old) also has RCC with mets to the brain and lungs. She had her right kidney removed in February then 2 weeks later we found out she had mets in her brain and then 2 weeks later we found mets in her lungs. She also had to have her lung drained 2 times because it was full of fluid and had collapsed.
She has 2 mets on the brain both in operable places and less than 1cm in size. She opted to do gammaknife instead of neurosurgery for now and had it done on Wednesday morning. She also started Sutent on Monday for the mets to the lung. Unfortunately, on Thursday we had to bring her to the hospital and it turned out that one of her brain tumours was bleeding. They say it was caused by the sutent so she is off that medication until she gets better. She is currently in the hospital recovering.
What country are you from? We are in Canada but my mom is getting treated in Canada and the US. Canada is treating the lung mets only. They only wanted to do whole brain radiation because they said that since she has 2 spots they won't do surgery. They also said that there could be many more spots on the brain but so far no more have showed up and she just had an MRI on Wednesday before the gamma knife.
She is getting treated for the brain mets in the US - Roswell Park Cancer Center in Buffalo, NY. She had the gamma knife there on Wednesday morning. Unfortunately, we are not covered in the US so we have to pay for her treatment there but that is the least of our worries. We will pay/do whatever it takes to get her the treatment that we think will benefit her the most.
Don't give up on your mom. I think you should request an MRI of her brain as it will show greater detail if there are smaller spots. At the very least, I hope you can find a place that will do gamma knife.
I wish your mom the very best. I pray for my mom everyday and I will now add your mom to my prayers.
Petula
hi Petula,
we're in Trinidad in the west indies, so as you can imagine, resources are limited. Gamma knife is not an option down here but mom did whole brain radiation as soon as we found out. Unfortunately there was not much shrinkage from that. Probably VERY slight.
Mom's brain mets had caused all of the problems. Even though there is a tumor in the lung which was discovered last august, she has still had no problems with breathing etc. Praise god. From this site, sutent seems to work well on lung mets so hopefully by the next scans there will be good results.
The brain mets however, we discovered last september after mom's limbs started to go paralysed on the left side. They were very small but causing mass swelling. Once that was brought down, she regained use of everything but she is STILL bed ridden. Honestly, she is so normal lying down there, i think if she pushed herself, she'd be walking long time. But she admits she's not one to overly push herself. She does alot of exercise and can sit on the side of the bed. Praying that she will be able to walk soon.
she just started second round of sutent. First round only really caused a very sore mouth so now she's on a lower dose. After this round, they will do more scans and see what happened. She's already beaten the odds in a sense cause back in sept they said she'd have 6 months and its already over that.
she's VERY bright and herself, very chatty, breathing well, writing etc. Its just that she's in bed all day which frustrates her. We have a nurse during the day.
She has no health insurance as my dad passed away from pancreatic cancer ten years ago so we've been depending on the gov't to cover the sutent. So far, so good, they've paid for these recent two even though they said they'd only cover one! There is no question that they have to help us cause we can't afford it.
keep me up to date on your mom. Have faith....
praying and wishing you all the best! Dally