worried about brain metastases

[spicysashimi]

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

[raneyf]

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?

[kamataca]

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

[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.

[recce101]

Spicy:

There's a good chance it's the chemo. Take a look at this thread on onctalk.com:

http://onctalk.com/bbPress/topic.php?id=344

Aloha,

Ned

[Welthy]

Aaron,

Ned's right. Tony gets blurred vision for a week or so after his chemo treatment. Some treatments are worse than others. Some people react more than others. I'm hoping that's all it is for you.

Welthy

[alexan]

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

[wondermom]

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!

[dchurchi]

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.

[missyk]

I agree, call the dr. and get the symptoms off your chest...might be chemo, that was my first thought when I read what you'd written.

Brain mets are treatable...amazingly so.

Wishing you all the best...

[spicysashimi]

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!!!

[Nova]

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

[raneyf]

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.

[wondermom]

I really hate waiting for results. BUT sometimes it is good when you don't hear right away. Maybe they just haven't contacted you yet because it isn't anything to worry about. Praying that is the case for you.

[fillise]

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

[Nushka]

Can't contribute to the information already here but wanted to tell you I'm thinking about you and saying a little prayer that everything will be ok. Let us know the MRI results.

Nina

[Welthy]

Oh Aaron, I'm sorry about the vision thing and hope you get some answers soon.

On the upside, if the trial goes long enough, you'll be in good form for "Talk Like a Pirate Day" on September 19. Yarrrr!

Welthy

[dscherer]

I hope sending prayers for good news, and who knows maybe the patch will become your signature!!!!

I see a TV show in the works!

Please keep us posted,

Dana

[Welthy]

Aaron,

Any news yet?

I loved Dana's comment re: tv show. I can see it now -- "Aaron xxxxx: Pirate D.A." (Sorry, I'm sooo warped lately.)

Prayers for good news.

Welthy

[Connie B]

I sure hope by now you have heard something, any news yet?? Sending you positive vibes.

[teriw]

Aaron,

Thinking of you and praying for good test results.

[Treebywater]

Praying here too.

[DanaBrooke]

thinking of you!!

[mary colleen]

Aaron, thinking of you and watching for news.

You will look cool with an eye patch:)

Keep us posted. MC

[spicysashimi]

Well, I called the doc after the MRI for the results - he couldn't talk and told his secretary to tell me the MRI was "fine" and that we'll talk at our next appt. Now, my nurse relayed some more specific information: "there's no scary stuff, but the radiologist noted some minor vascular irregularities that should be examined on a follow-up exam." She didn't think there was much to that and I know, even before talking to my doc, he's going to make nothing of that. Just a little blip that most healthy people would have (or something similar) if they went for an mri. Anyway, no tumors in the noggin. I guess that's the important part.

Now, what about the eye. It hasn't really improved. Doc wants to see results of my PET scan, which was taken late yesterday (Friday) before he refers me to eye doc., because, according to my nurse, if the PET shows the cancer is active, he is more likely to think the eye problem may be cancer related. Makes sense. Although, if the MRI is clear, how could new tumor development in my back or neck or chest interfere with my left eyeball? We'll talk about the PET results this Monday, when I am supposed to get treatment, which hopefully will continue, because this stuff is way tolerable.

I'm with my dad on this one who thinks I might have an infection - resulting from my immuno-deprived position post-treatment. To support that contention, I've noticed that walking around outside, for example, with both eyes open, my left eye will tear up while my right eye will be fine. Similarly, I've felt "pressure," for lack of a better word in my left eye. All of this makes me think that this eye problem is more local than dispersed somewhere throughout my body.

What I am hoping for: PET shows reduction or stability. I'm kind of worried because I had some burning in my chest last night and these past two weeks I have felt like sh*%, pain and low grade fevers. Then again, I've learned that pain is actually a bad indicator of regression/progression. I am also hoping that this eye thing is just a simple infection that may require some antibiotic eyedrops.

Thanks for all of your concern. I'll update after Monday in the Test Time section.

aaron