Brain Mets Sisters

Great to hear Becs!!

Good news and experiences ladies! just I want to say thr brain mets not only for HER+ as I read here and studies (some ladies here with HER- and brain mets). the point is that I listened a lot of success story of treatment of stage 4 mets. be positive.

Hi Ladies,

It's been a while, but wanted to share the latest on my mom. She was having seizures, 2 of them less than 2 weeks apart, January 5 and 15th. Found 3 new lesions and she was put on Keppra and steroid. She was scheduled for gamma knife on Feb. 6 and was unable to do it because they found 3 more that morning on the MRI that were tentacle like for lack of a better word. So she is doing WBRT again, this time 12 rounds at a higher dose. Her last WBRT was Jan. 2016. Has anyone heard of it being less effective the second time around?

Sogny...I think there's always hope. I was diagnosed in November with stage 4 - after being "clean" for 9 years. It was in my bones first, but in January I learned that it was also in my brain. I had gamma knife rads a few weeks ago and feel fine. I've heard from other with brain mets who are doing well a few years out. I look for stories that keep me hopeful.

Here's a story that helps me: http://www.mbcn.org/2016/09/29/eloise-ned-no-evide...

SOGNY, I was dx'd with more than 20 brain mets in August of last year (they stop counting after they reach 20). The two biggest are in the cerebellum, over 4 cm each. Surgery was NOT an option, only WBRT.

I was very hesitant about it at first because it can to lead neurological deficits and cognitive loss. But that was my only option. Too many mets to map out and do cyber or gamma. I'd only have a couple of months, I was told, if I did absolutely nothing. A couple of them were already bleeding internally.

So I threw the dice and went for it. I had ten sessions. My RO put me on a Rx for Namenda (generic Memantine), which is an Alzheimer's med to help with the deficits and memory loss. I'm doing pretty well. Every once in a while I forget a name, and when I get really excited and/or agitated, my mind sort of freezes up, but it clears in seconds.

WBRT is NOT a cure...it was only meant to buy me a few more months. Well, it's been five months now, and my blind spot is coming back, along w/ a bit of dizziness, random headaches, and whooshing sounds inside my ears is back now, too. This is to be expected as run-of-the-mill natural progression, given the size and how many brain mets I have. They can't radiate me again or I'll turn into a vegetable. I am taking a low-dose steroid (dexamethasone) and CBD tincture to keep seizures and blackouts at bay.

As I've said on this forum b4, every morning that I can wake up and still see, walk with my cane/walker, and string a couple of semi-coherent sentences together is a GOOD day! I don't know how long that will last, but I'm grateful for whatever quality I still have left. Things can change with this damn disease at any time. Getting TWENTY brain mets was the last thing in the world I ever expected, but that's how it goes.

I wish you well with whatever decision you make.

L

Adding my two cents SOGNY, WBR was done almost 18 months ago. It was a long recovery BUT have had no lasting effects other than some residual balding pattern. I sm fine with that since QOL is very good. I only had one large met that was removed by surgery but MO explained the risk of IBC growing aggressively if we did not try the WBR instead of local treatment. I have no other issues and feel much better, memory is better than it was over last couple years. WBR is not fun, but is doable and can certainly extend a deddnt QOL depending on where you were at pre dx. Good luck.

Tre4, I just want to say I am sorry about your Mom. I am unsure about effectiveness or risks of WBR the 2nd time around. Not sure if anyone is still around who had it twice.

Aww, hate it when it all comes at once for sure. Makes it so much harder for patients and caregivers to deal with, that much is true. Hopefully the WBR can at least provide some symptom relief for your mother.

Hi all. I'm not sure if this is the right spot to post but I'll try. My mom was diagnosed with stage 4 breast cancer the Thursday before December. It has spread to the brain among other places. Her hormonal therapy treatment was going well and everything was great until she finished radiation on February 6. On February 15, she started having some short term memory and confusion issues that rapidly got worse throughout the day and we ended up taking her to the ER. They basically said it was because of the cancer in the brain but to follow up with her oncologist the next day on Friday and we did. He told us to make an appointment with a neurologist and the soonest we could get in was Monday. Over that weekend, she started repeating things she was reading on tv. Long story short, the neurologist had her go into the hospital and I guess she was being weened off the steroid from the radiation too quickly so now she's home and back on it. Ever since she's been back, she's not the same. She's super negative and condescending to almost everything she says. Her memory is getting better but it's almost like she left her personality at the hospital. It's almost like everything I do is wrong and I'm so frustrated because I just want everything to be back to how it was before. She can't drive and we don't want her alone. Things are just getting really hard and I don't know what to do.

Maire, roid rage is real. I found my overall mood pretty happy but could snap. I also felt amped up and wired while on them. Only things helpful to me were walking to keep the nervous energy to a minimum. This was the approx 3 weeks I was on a high dose just before surgery. When I was in hospital, I wore down their floors walking around.

Tre4, an omaya reservoir can deliver chemo directly to the brain for sure. One of us, Agness has one to receive herceptin directly to her brain. She also has more experience with both the port and an LM diagnosis. She does post here from time to time, but may be worth a message to her. She can be quite informative. Take a look back through this thread as well as she has been very informative in the past.

As far as a second opinion, if you and mom do not feel she is being offered enough treatment and want to explore more, then definitely seek a 2nd opinion. As long as the patient is onboard and wants to pursue more avenues, you should do it. As long as she is wanting to do it herself and look around, follow what SHE wants. If she does not want to pursue other opinions, respect that too. Good luck to you both. Keep us posted.

Chowdog, first I’d like to say that I am very impressed with the detail and calmness of you post given what you’ve been hit with this month, that control will serve you well.

For SRS, I had Gamma Knife to 5 subcentimeter lesions in my cerebellum, it worked well, 4/5 are now gone and the remaining one continues to shrink. The numbing injection and head frame were scary but doable and the fact that it was a single treatment was great, recovery was also pretty easy. I’m not sure what the concern is though about your treatment for bone and lung mets, in my experience, one had no impact on the other. Best of luck to you

Illimae,

Thank your for your response. Just to provide a little bit more details and take a step back. So the 3.7cm was discovered this past Friday. My MO sent me to a RO right away. RO offers to do 3 sessions SRS/cyber/gamner knife to control the big tumor and one more session for the 3 tiny ones. He mentioned that my MO believes by treating/contolling lung and bone Mets,there will be less cancer cells traveling to brain, therefore it will be easier to contorl brain tumors. Logically, this makes sense to me.

Today, I met with a neurosurgeon ( who will collaborate with my RO on SRS) . However, the neurosurgeon painted a relatively grim picture for me. The whole consultation felt like he was trying to "influence"me to do surgery for the big tumor followed by SRS. For example, I asked the pros and cons if I choose to do SRS first and surgery (several months later pending how well I respond to SRS), he highlighted that due to the tumor size, if SRS can't control the tumor, it could cause hydrocephalus or serious issues like stroke and even coma. He also made it sound like it wouldbe a tougher surgery to do down the road if I do radiation first. ( skin issue and wound healing) He also said he thought the 3.7cm tumor has only only been there for couple of months. ( I have no neurological symptoms besides contact lens related blurry vision). I understand things could progress really fast. Finally, he mentioned 2x that I would have 3 to 4 months to live if I don't do both either surgery or radiation.( which I never said I would do neither). He basically said I would be taking a big risk if I choose SRS the surgery later, and that's why surgery is the standard recommendation.

On the lung and bone Mets, my main concern is since I don't know if my hormone/Her2+ status have changed since 2007, I don't know if I am on the right course of treatment. Now I hope the biopsy will solve that and get a proper treatment plan in place. However, I assume I can't start chemo or any targeted therapy during the brain surgery and the recovery period, while lung and bone Mets continue to progress?

Sorry for the long response. I hope it provides some clarity.

Thanks for the clarification chowdog. Yes, systematically the body mets need to get under control, perhaps no chemo and radiation together but Herceptin and Perjeta shouldn’t be a problem if you are confirmed HER2+.

I see now the surgical urgency since a large active tumor can potentially cause seizures, stroke,etc. I have heard of cyber knife to larger tumors with gamma or WBR to smaller ones.

Lita provided some great insight, hopefully others will as well. Please keep us posted

I'm going to be joining you, I have been having sinus infection feelings and my taxol has caused some neuropathy in my lower lip, well the side of my smile was off Dr immediately came in and said we going to do a mri, you know what we are afraid of, we'll I have Mets in several locations near the cerebellum and up above the eye,. I will meet with the radiation oncologist in the morning, to figure out the plan.... Starting on dexamethason...still numb

Amie