Jump to content

worried about brain metastases


spicysashimi

Recommended Posts

Hi all,

Once again I worry that the disease has crawled into my head. Most notably, I've had vision problems - blurring. I think its more in one eye than the other. The computer screen is hard to look at, for example. I've also felt like crap - but I did get treatment 5 days ago, so that may have something to do with it. I can't seem to get anything done or "get it together". I just keep waiting to improve but I'm afraid I'm not improving. I don't really have any headaches just the usual. This is really frustrating because I have to start a trial on monday (my first). Another thing to note is, since Monday, I've stopped taking Lyrica, a nerve drug known to cause vision problems and other things. I've also stopped taking steroids - I hate them.

Anyway, Julia and I are really worried. If its the worst case scenario - how bad is it? Any success stories?

thanks,

aaron

Link to comment
Share on other sites

Well, I felt really bad when I learned I had the brain met, but after talking to the radiation oncs, I feel much better. They told me they would consider doing SRS for up to 5 mets at a time given my age and performance status. They also did not recommend WBR at this time, since I only had the one small one that took quite a while, relatively, to develop. They said, in the event that I do have to have WBR, they would go very slow to try to minimize any cognitive difficulties. The last thing was, that although median survival after brain mets in NSCLC is on the low side, they expected me to do quite a lot better than that because I was an "exceptional" LC patient. They think they can control my brain at this point at least. Oh, they also said SRS was at least comparable to resection, if not better, according to both rad.onc. and neurosurgeon.

Also, if progression is only in brain, your chemo is still working, so that's good news. Hopefully it's just your medicine. When do you get scans?

Link to comment
Share on other sites

It was odd, whenever Mom had symptoms that appeared to point to brain mets, her scans came back clear. When she had her first mets, (discovered when she was symptom-free) they were easily dealt with through Gamma. After her last ones were discovered, she was just too tired of the process to keep going, though her radiation onc. said it could have a favorable outcome.

I have a friend whose husband has survived 8 years after a nasty brain met. There are amazing strides in tx.

Hope everything turns out to be hunky-dorey.

:) Kelly

Link to comment
Share on other sites

Guest Kaylei

I've been treated for six brain mets in the last 14 months since my diagnosis. I'm doing very well. For me, the brain mets have been very manageable to treat. Have had Gamma on 5 and localized radiation on one. Hope this helps.

Link to comment
Share on other sites

Aaron, please talk to your Doc. they may not be brain mets. 2 month ago they found me 4 they did the WBR, they are gone & the only thing that happened to me is get bold (big deal),The brain mets don't kill you, but you probably don't even have them.

hugs bucky

Link to comment
Share on other sites

My mom had 2 brain mets upon diagnosis that she had treated with WBR. It took care of them completely. She had one other one pop up near the surface and it was surgically removed. It was scary to have the surgery but it was actually pretty quick and painless. She went home the next day! She is doing well and her MRI's have been clear. The one that was near the surface was the one that was effecting her vision. She was seeing flashers in the corners of her eyes. I know it is scary to think about brain mets but they are treatable. I have been chatting on another site with a woman who had 8 brain mets shortly after diagnosis and, I believe, that was about 4 years ago! She is doing pretty well. Good luck!

Link to comment
Share on other sites

Hi Aaron,

If you think for a second you may have brain met, call your Dr and get an MRI.

Better to have MRI and know everything is fine, than

not having one and there be even a small met that could grow.

Alan had 1 brain met that was treated with WBR and them IMRT treatments

and has had clear scans ever since (2 years now).

Please keep us posted and you continue to be in our prayers.

Link to comment
Share on other sites

UPDATE: no word from doc on last Friday's MRI but I feel vision is worsening. Now sometimes I see a twinkling object in the upper sphere of vision. Damn. This is really annoying. I'm getting an eyepatch because it either mostly or entirely the left eye that's problematic. That'll be a nice look, just in time for my first trial.

Hardy har har mateys!!!

Link to comment
Share on other sites

Hey, I LOVE the pirate look! I have Captain Jack bumper stickers on my car, posters of him hanging in my computer room.... I think you'll look excellent!

Seriously, good luck with your MRI results. Maybe they'll just say you need glasses!

Take care,

Nova

Link to comment
Share on other sites

My thinking was that if they weren't calling me hours after my scan to tell me bad stuff (like they were after my PET when they were worried about my femur fracturing), then it probably isn't immediately dire. So, maybe still a met or mets, but not likely to be horrific news, hopefully. That's my philosophy anyways. Sorry about the pirate look for the trial, but I hope it's less annoying if you cover up the eye.

Link to comment
Share on other sites

Ok Aaron, that eye patch is going to be sexy! But the eye strain could be stress. My mom has "ocular" migranes. She has blurred vision and auras but no headache. She was having them right before her last scan, but once she got the results (good news) she hasn't had another one. I'd get checked to make sure, but it could be stress (hmm, first trial, treatment, being scared---nope, no stress there).

Susan

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.