Ugh Brain Mets!
 

Hello Lovelies, I need some of your advice again.

Just when things were going well....I just found out I have 3 little mets in my brain. Ugh. I had a seizure last week and the MRI found em. Doc very optimistic and I'm getting the cyber knife next week.

I remain NED except in da head. Interesting, no indication from my tumor markers on this one, all was normal low. I didn't really have any symptoms until the seizure hit.

Right now I'm on the dex steriods and Keppra. The dex is driving me batty, I am not sleeping well and crabby! I've been cleaning a lot around the house though lol! I'm off work for a bit until I get this zapped.

A couple of questions: any advice on manage the dex? I take 4 mg twice a day. I have the flushing face - thank goodness it's winter. Anything that can help with sleep?

Also - what's the cyber knife like? I had my mask made last week, now I just want to get I to get it over with. How long on Dex after the cyber is done?

Thanks as always for your help, it's good to know others have been down this road. I am very optimistic and looking forward to getting this behind me.

I guess I deserve my ID name now cuz I'm Dizzy!

Re: Ugh Brain Mets!
 

Hi, my sleep answers are:
1)A sixth to one half of a tab of Restivit and then (instead of trying to sleep) just lie down in a quiet dark and comfortable place and embrace the drowsiness. Let drowsiness flow into you and fill your mind and take you to that mmmm place where you are so drowsy you are likely to then fall asleep before you know it.
2) Meditate for blocks of 20 min to an hour or more. Lie in bed and let yourself go into a meditative trance where you bring yourself back to awareness of a word or a mantra or your breathing or a meditation tape you like. Be comfortable that this will rejuvenate the body so you will get away with a lot less sleep.
3) Remember that a recent study showed that people worried about not sleeping actually sleep several hours a night more that they think. You can be "thinking" and even "worrying" and still be asleep. People attached to machines thought they had not yet fallen asleep, but they had. So maybe you are worrying needlessly
4) Gather up a collection of really good books, and fancy flavoured tea. Or other good relaxing things (preferably not using a screen)eg massage chair, fav music, playing musical instruments , learning a foreign language, quilting, knitting or crocheting. Or just things to fill your "I can't-sleep" time well so you feel it is not wasted. "If I can't sleep at least I can have a good time lying in bed resting and NOT sleeping".

Re: Ugh Brain Mets!
 

Wife has been there, done that three times. Gamma Knife commonly will make you nauseous, and the steroids help. It will potentially cause minor hair loss, but it should not be significant. Brain mets need follow up MRI scans, preferably at the best place you can find. Know that if the Gamma knife does not work (it is 70% effective), that the options are there and your doctor may not know about them.
Dex steroids and Keppra will make you rough to be around, so do things you hate to do and blame your anger on having to perform those tasks. That way you do not blame the disease. Two to three weeks and you are good to go.
Balance might be an issue for a short period. The MRI scan after the Gamma Knife (actually the one about four weeks after the procedure) should be the all clear to go skiing, dancing, cheerleading or similar activities. Try not to do things that cause your head to shake significantly. Nina slept with a back pillow in a chair for the first week.
Make sure the doctors follow up with evaluations every 60 to 90 days.
And email onto this board so I can read how you are doing. It is not a death sentence or a shortened life span if you do the things needed. Tell the doctor you are in contact with someone that had brain lesions five years ago and that she is now in remission totally.

Re: Ugh Brain Mets!
 

Thanks for the replies Jessica and RolePaul. Love the idea of mediation and the sleep advice, I'll give that a whirl Jessica!

Your reply gave me a good teehee RolePaul, I am definitely a Dex Monster right now. I have been cleaning my house like a crazy woman. Good idea to do some crap jobs while I'm like this. Seriously this house has never been so clean.

Thanks for the sage advise, you all help make this less scary. I'm still on for gamma knife next week Tues and Thurs. After that, a couple of weeks and they will taper dex. Hopefully I'll go back to non monster mode. Doc told me MRI every 3 months for the foreseeable future.

Re: Ugh Brain Mets!
 

Hi Dizzy Do, you are currently living out my nightmare, but hearing how it is to be you going through this with such remarkable aplomb, plus informing feedback like RolePaul's, gives me the most amazing, valuable and somehow calming vision into the experience.

I love the way you are just going with it, doing all you can to make it work and to resolve the problems as they arise. You are amazing! Please keep on posting, sharing this, letting us travel with you. I will have much less fear of brain mets and cyberknives etc. I thank you deeply for this, and wish you every success and speedy healing.

Re: Ugh Brain Mets!
 

Thanks for all the support! I love the other posts as well about the stereotactic radiation successes. Right now I am hanging in here, my only issue is dealing with the dex. Wow this stuff is something else, hard to describe what this is even like. The rad doc's nurse helped me out a lot this week, adjusting the levels down a bit and checking up on me. So I feel well cared for, now just waiting for the procedure next week and then hopefully the taper off the dex. I have so much energy I think I will go clean the basement today. My attention span is about 15 seconds so that should be interesting.

I'm really curious about what the procedure will be like next week. Lots of people involved, rad doc, neuro doc, techs, a physicist (not sure what exactly he does, I suspect he designs the rads to shoot). I'll will be relieved when it's done and the spots are gone. It's a creepy feeling knowing these little buggers are in my brain.

Re: Ugh Brain Mets!
 

Dizzy do sorry about the brain mets... I hope the gamma knife takes care of this crap. I have no personal experience in relation to stage 4 cancer and I pray I never will.With that said I do have experience with the no sleep and 15se one attention span. The only thing that partially worked for me was 2 mg of Ativan. Even ambien was useless. Weird thing is Ativan at 1mg would wire me out but doc suggested 2 mg at night only and no narcs. Just throwing that out there for you

Re: Ugh Brain Mets!
 

Hi Dizzy,

In June, 2014 I had a brain met that was discovered by seizure, also....no other symptoms, or metastasis at that time.
Did the dex and Keppra....holy cow, was I a Hot Mess!!

Hang in there, it does get better. The nurse suggested taking the dex at 6 am, 10am, 2pm ,and 6pm, and adding melatonin about 8 pm, to be able to sleep. It did help ( i wasn't decoupaging the fridge at 3 am and getting confrontational with the neighbors anymore!)

I had a successful Gamma knife treatment, then had rebound swelling 6 months after. Currently weaning down from another huge round of dex ( started in Oct., now down to two milligrams a day, will finish Jan 31), but it has taken care of the swelling.

Switched from Keppra (which made me severely depressed) to Vimpat.

Liver mets discovered about the same time as the swelling, so now in treatment for that (Taxotere/Herceptin/Perjeta).

Know that you WILL get through this!! There is lots of love and support and "success" stories from the women on this board.

Good luck with the gamma.....let us know how it goes.
Holding you in Love and Light, and sending healing energy ~~~~~~~~~~

Re: Ugh Brain Mets!
 

I had my first session today with the gamma. Pretty much a non event, I almost fell asleep! Lots of people they made it easy. I get 2 more treatments over the next 2 weeks because there are 3 spots. They zapped the 5 mm one, they think that one game me the seizure because of the location. Right now I'm a bit tired, even with the Dex madness this seems to fatigue me a bit.

Nurse thanks for the advice, I asked for some Ativan today I will try it. They also put in for a sleeping pill, ambient, I'll leave that as plan B.

Embur thank you for sharing your experience that is so helpful to me! I laugh at the Fridge decoupage omg! I scrubbed the crap out of my fridge yesterday and then cleaned and arranged the magnets on the front of it. I don't know why, just some strange complusion. I also have been ordering lululemon clothes and forgetting it did it. This dex stuff is strange. The doctor cut me back a little bit more on dex starting Thursday, maybe I scared him today.

Thanks everyone for the support, I feel so less alone in this, it really helps!

Re: Ugh Brain Mets!
 

Well done for getting through it so well. I was intrigued to learn that after 6-9 months the tumor/s should swell as a sign the process is working, and then start to shrink, and continue to have changes for up to 18months as tumor the cells die and necrotize. It is amazing to have such a relatively non-invasive process able to target metastatic brain tumors so well. Sounds much better that Whole Brain Radiation! I hope it is completely successful as StephN's was, and that you will continue to give us feedback and share your amazing experience of this process with us.Thank you so much and hope the next few days and weeks are gentle on you.

Re: Ugh Brain Mets!
 

Yea! One down!

Glad to hear it went well. You will notice some fatigue, even with the crazy-making Dex. ( my therapist said the steroid-mania is like the mania in Bipolar Disorder. You may do things like compulsive spending, committing to projects that you can't complete, or compulsively scrubbing the fridge , and then not remember. Wild stuff!)

Allow yourself to rest when you need to.....especially with multiple treatments. Don't push too hard.....There will be plenty of time for that later.

Keep on keeping on....we will keep sending good energy and prayers your way!!

Re: Ugh Brain Mets!
 

Hi everyone! Just an update - I'm still doing good - I had my second treatment this week and I am scheduled for the final one next week. Definitely the worst part of this is the Dex, my skin is breaking out and I am acting crazy! Embur that is interesting that it is like the manic phase of bipolar, it does feel like that. It is a bit better since the dose was cut. Also Nurse thank you for the advice on the Ativan, that worked for me and I am sleeping better than I was. The other issue is a bit of fatigue like embur described and some confusion at times, but really not too bad. I am still working as I can. I can't drive because of the seizure (6 months restriction Washington state) but getting by with lots of rides from coworkers, family and friends.

Some of my craziness - I'm now a strawberry blonde, redid My wardrobe mostly lululemon and still cleaning the house on a daily basis. Last night I woke up at 2 and decided I needed to cook some bacon.....Dex taper will start after next treatment sometime, my poor husband will be so relived I am sure....

Re: Ugh Brain Mets!
 

Two down, one to go! You are making it thru, girl!! :)

I love the "cooking bacon at 2 am" and strawberry blonde! Have fun with this...it makes all yukky stuff easier. ( I almost miss the mania....now just have the puffiness/weight gain...acne is starting clear up, too)

Keep us updated and know that we are praying/sending healing to you.

{{{{{{{{{{{{{dizzydo}}}}}}}}}}}}}}}}}}}}}

Re: Ugh Brain Mets!
 

Hi, I think you are absolutely amazing and I really admire your courage. I find myself that the important thing about periods of madness is to continue to like and understand and accept yourself, and that must be easier if you are not attacking people and or doing dangerous, risk-taking type crazy stuff eg becoming totally promiscuous or spending hundreds or thousands of dollars you cannot afford. All your mad things are actually quite quirky, admirable and ones that will not hurt anyone. I do hope you are keeping a journal of this period. And I wish you all the best for the third treatment and overall outcomes. My thoughts and admiration are with you.

Re: Ugh Brain Mets!
 

Hi everyone - just an update - I finished my treatment two weeks ago, it was pretty straight forward. Now it's wait and see - MRI will be in 2 months. Tapering off the Dex is a bit rougher than I expected, I hated it so much I could not wait to get off. I've been fatigued and have had to back up a couple of times due to headaches, right now I on only 1 mg per day versus 12 at the Max so I'm getting there. Slow and steady seems to work. Definitely the Dex was the worst part of this.

Thanks for all the encouragement and sharing of your personal experiences, that really helps make this less. Love you all!

Re: Ugh Brain Mets!
 

Fingers crossed and prayers going up!

Re: Ugh Brain Mets!
 

Thank you for keeping us all in the loop. I'm glad you're done with treatment and tapering off the steroids.

For me, having to take Decadron was the worst part of being on Taxol. Nobody warned me that it would make me crazy and bitchy. I would say things that, while "true," were completely inappropriate.

Re: Ugh Brain Mets!
 

Hi I have read your post a few times. Have Gamma Knife on Thursday in the UK - here it is a relatively new treatment so few people I can link with and your post fills me with hope. I have been on Herceptin with NED continuously for 3 years so the new sudden diagnosis was a real shock.

Re: Ugh Brain Mets!
 

Hi DizzyDo,
How are you feeling now?
I had stereotactic surgery in Dec 2014 for 4 brain mets. I didn't really need the dex. Have you tapered off now? I had an MRI about 1 month later. Did you have your mri yet? And they are checking me every 3 months. I don't have systemic disease so there's not much to do. I can take Tykerb, but opted to wait until the results if my next MRI. I also asked my onc to start back up on herceptin which I know doesn't cross the BBB, but I'm hoping it will keep my body clear. Are you on any other treatment? Keep us posted.

Re: Ugh Brain Mets!
 

Hi bevinSomerset,
I remember being newly diagnosed with brain mets. I was also in shock. I had 2 days back to back of SRS treatment that left me fatigued. I just wanted to lie down all the time and had some trouble concentrating. Honestly, i just keep wondering if it worked. But I'm still working and try to do the usual things in my life. I wish you the best and please keep us posted.

Re: Ugh Brain Mets!
 

Hi DizzyDo,
I had surgery and stereotactic radiation for a 3 cm tumor to my pre-frontal cortex in 2004. I also hated the Dex. I am on Tykerb and Herceptin and continue to be NED. My thoughts are with you.
Barbara H.

Re: Ugh Brain Mets!
 

Thanks everyone for the kind comments and support! I just got the results of my MRI two months post treatment. No new lesions, the large one is down to 8 mm from 15. The small ones are about the same or a bit smaller. No indication of active disease was the call from the radiation onc. I am so relieved! The onc said it will take a while for the body to reabsorb the tissue from the lesions and possibly might have some scarring. No edema was present (thank goodness, I don't want any more dex!). The rest of me stays NED (well sorta Ned, I have some bone scars).

I still have some fatigue and I gained 20 lbs on the dex. Doc said that should continue to improve, I'm walking about an hour a day and that seems to help.

So the stereotactic rads seemed to have worked. I will be getting MRIs every 3 months for a while now. I'm still on Keppra and probably will be for another 6 months at least. Hopefully I'll get a break for a while, though it's hard to tell on this roller coaster ride!

Re: Ugh Brain Mets!
 

Hi!
So happy to hear from you and good news to boot!

Looks like all the right things are in place for a long, slow dance with NED.

Re: Ugh Brain Mets!
 

Hi, I am delighted for you that your treatment has worked, and hope the 18-24month process of "tumor-disintegration and reabsorption" is not too anxiety-provoking for you.
For losing weight, I found three-to-four-day "fasting diet periods" (ie max 600 calories per day of really healthy food) every 3wks really helped drop the 10kg I gained on chemo. It is also meant to do wonders for the immune system-Volter Longo at University Southern California has been researching this for a while.
http://www.medicalnewstoday.com/articles/277860.php
http://news.nationalpost.com/health/...ew-study-finds
Worth looking into maybe?

Re: Ugh Brain Mets!
 

DizzyDo,
Good to hear that lesions are smaller and no new ones!

@JessicaV: I have been trying to "fast" as well and find this topic fascinating. I would love to have more discussions on fasting, but won't side track from DizzyDo's great news!

Re: Ugh Brain Mets!
 

What a challenge - brain mets and a failed implant. You are braver than you think. Things sound positive. Forget the implants and concentrate on survival.

Re: Ugh Brain Mets!
 

I'm glad to hear things are improving. I hope things only get better. :)

Re: Ugh Brain Mets!
 

Hello! I haven't posted here in a while. I had five brain mets. I first was treated with whole brain radiation. Two mets were still there on my next scan, and I received Cyberknife on those. Like others said the sex was the worst part of the whole thing. I was on them for months. Gained fifty pounds! My house was soooo clean. Lol. I just wanted to tell you that since the cyberknife I have been all clear. It's been about eight months now. Definitely an effective treatment and pretty painless.

Re: Ugh Brain Mets!
 

Lolol. The Dex was the worst part! (Although the sex wasn't that great either))) haha

Re: Ugh Brain Mets!
 

KsGal, thanks for the belly laugh! Glad to hear to hear of your positive results DizzyDo.

Re: Ugh Brain Mets!
 

KSGal - oh loved the typo, too funny! I spit coffee on my iPad when I saw it, I was laughing so hard. Thanks all for the positive thoughts and best to all of you. For those of you doing the SRS, hang in there, it does get better!

Re: Ugh Brain Mets!
 

Hi All This is Bev in Somerset England
Just thought I ought to update and maybe get some advice. After the Gamma Knife in March I eventually came off Dex and tumour reduced to 1.4cm. However, in Sept they found signs of"progression" and the current wait and see view is a hard way to live. The MultDiscipline Team are hoping it is necrosis. Some symptoms returned - mainly nerve pain and back on 6mg Dexamethasone plus Gabapentin. Anyone else had this 'necrosis' issue after Gamma Knife?

Re: Ugh Brain Mets!
 

Hi Bev.

I had rebound swelling and necrosis from Gamma knife 6 months after the treatment. Was put back on a heavy dose of dex----how we all know the UGH that comes with dex!!--and watched and waited. ( discussed the very real chance of awake craniotomy needing to happen...on Christmas Eve! Dodged that bullet, thankfully)

Symptoms subsided with the steroids, and the follow up MRI showed significantly decreased edema. The next MRI showed minimal edema and a slight decrease in necrosis and tumor size, no new lesions. Scheduled for a 6 month MRI in November...so far, no neurological symptoms, so I am hoping for continued good news.

I was on Keppra....made my depression worse.tried Lamictal but had an allergic reaction, now on Vimpat, hoping to wean off that if good MRI report in November.

Surprising to say, and experience!, but there IS life after/with brain mets...I am alive, and functioning well, 16 months after brain mets diagnosis, and subsequent liver mets dx. A year ago, I was sure I wouldn't be alive in September 2015....yet, here I am. This disease is a difficult thing to track, it can change course at the drop of a hat. I am so grateful we have each other!!

Re: Ugh Brain Mets!
 

Hi Embur
Thank you so much for your quick response and information. Sleep would be so good. Feel it is months since I slept through the night. I am going to try to reduce Dex starting tomorrow. My met is wrapped around the Thalamus so have sensory issues, vision and nerve pain all down right side of face/body. Thinking of exploring alternatives for pain management such as acupuncture as pain medication almost seems futile. Knowing someone else is in this world who has been through similar is strangely comforting. Dont feel so alone. Bev

Re: Ugh Brain Mets!
 

Funny, Bev, I am not known for quick responses! Quite the opposite...I am not on this forum regularly, and rarely respond. I just happened to be on the site today!

Yes, I know the sleeplessness very well...spent 8 months on high doses of dex...you should see my house hahahaha....while most women are spending those frantic hours cleaning, I was suddenly "artistic" and felt compelled to do things like decoupage the refrigerator, paint inspiring words like "believe" "vibrant healing" and " focus outward" all over the walls, and scotch tape pictures of sunflowers all over the kitchen! It is quite the masterpiece ;)

For the sleeplessness, I found valerian, and Yogi Kava Stress Relief tea, to be somewhat helpful. Also, the neuro nurse said to stagger the doses throughout the day, getting all doses in before 6 pm, and not take any dex after 6 pm so that maybe I could get some sleep. That worked a little bit, too.

I don't have too much pain, I do have monthly acupuncture and sound therapy ( more if needed) I meditate/pray daily, practice yoga. I do what I can to look forward...obviously that is easier to do when I'm feeling well. This past winter was a rough haul, and I wasn't really feeling the whole "holistic, positive" vibe hahaha
One day at a time :)

We are out here for you, Bev...maybe not physically with you, but always spiritually. You are never alone :)

Peacelovehugsjoy

Re: Ugh Brain Mets!
 

Embur You are a star that message was just what I needed. Ordered the glasses today and will have prisms fitted next week so double vision should be obliterated from my life. Looking into acupuncture and will stagger Dex - so helpful. Not one for praying but with two of my 3 children now living in USA and discovering they have gained from a Georgia/Florida 'Southern' life adaptation I think its time I learned from them and at least look into Yoga.

Re: Ugh Brain Mets!
 

Hi Bev, Can I ask where you had your SRS done?

Re: Ugh Brain Mets!
 

hi godzilla

Carried out by NHS in Bristol, UK, there are 7 gamma knife centres in uk. Due to funding issues the equipment is only used 2 days a week. Crazy when so many more cancer patients could benefit.

Re: Ugh Brain Mets!
 

Thanks, My Girlfriend and I have got an appointment at St Thomas's in London on Thursday to talk about SRS to thhe tumour bed.

Agreed, more should be used of the facilities.

Re: Ugh Brain Mets!
 

So so sorry that I used wrong name! Bit weary today. Good luck with St Thomas - main centre in UK for cancer related illness is Royal Marsden in London. I am hoping to transfer my case to them soon.