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.