Brain Mets Sisters
Comments
-
Thanks for sharing! I'm new to brain mets, had gamma knife almost two weeks ago and very much appreciate hearing good news! Congrats
0 -
Great to hear Becs!!
0 -
So good to hear Becs. I have followed you since my actual dx in 2016, though I was told probably had my brain met since dx in 2015. You were one of the ones I read before and after actual dx of the brain met.
0 -
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.
0 -
great news Becs
0 -
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?
0 -
Hi, I been coming to the tread since my brain met diagnosis but I have not introduced my self to the group. I am self-conscious of my writing but today I decided to "talk" to you...lol...here it goes: After 16 weeks of THP I continued on Herceptin and Perjeta every 3 weeks until the present moment. No evidence of systemic disease as for jan PET SCAN), unfortunately the Brain MRI results was finding of 4 very small lesions.
Scheduled SRS to zap the lesions . On pre treatment MRI new findings: Multiple (at least 20) enhancing lesions in
supratentorial and infratentorial brain. Now WBRT is the only treatment option given.
Asked MO about immunotherapy options she said since HP is working in the rest of body she does not recommend change because we don't know for sure if other med will work , it is better not to risk, but I don't see any point of not trying because in my mind after WBRT I don't have much more time anyway, i see very small chances of working long term so what is good about keeping HP woking in the the rest of body. My thinking has been confusing for sure , probably symptomatic of the brain cancer.... I would like to ask if all of you had to do radiation therapy before trying any other med combo ? maybe you could give me some insight of the logic of it..... I need to make a decision on the WBRT and I appreciate any input . Thank you all.
:
0 -
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...
0 -
Azs40
Thank you. It is great that you had the option of doing Gamma Knife, how many lesions did you treat? I have seen many successful stories with Gamma knife/ Cyberknife/SRS but localized treatment is not an option in my case, too many lesions.. unfortunately I don't see many WBRT cases with same results...I don't get why they have to do WBRT before trying meds that can reach the brain , are the risks /SE the same?
PS...after i wrote this ..I saw the link you posted, what inspiring story !! thank you for sharing it!
0 -
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
0 -
Big hug, Lita.
0 -
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.
0 -
I was not offered other meds since I responded so well to tx I am on now. Still on Herceptin and Perjeta. Have been NED below the brain for almost 3 years. I would not have wanted to switch meds.
0 -
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.
0 -
Thank you Mara. She has 4 sessions of WBRT left. Her last MRI also mentions leptomeningeal which I know is not good. It is heart breaking and all happened so quickly.
0 -
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.
0 -
Hi all.
Anyone have a success story with leptomeningeal mets? If so, please share. I have an area at left front of my head and we haven't been sure if it's skull or other. I had gamma 3 weeks ago and am on Ibrance since early December. I went to the ER on Friday with pins and needles sensation on left side of face and left arms. Ruled out stroke/hemmorhage/clot. And no changes in brain, except possible uptake in that left front area. Waiting for my onc (at different hospital) to go over all scans and call me back after hospitalist where I went to ED suggested anti-seizure meds. ANYWAY, support needed.
Thanks all
0 -
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.
0 -
Saextro, I don’t have brain mets but I do know steroids. While everyone has a different experience I know that when I was coming off I didn’t like myself. I used to say you should just lock me in a room for a couple of days. I was nasty to everyone. It was awful but did go away eventually. I hate taking steroids but they are miracle drugs in some ways. Have patience with your mom but make sure the doctor knows about everything you’ve noticed. Docs never tell you about these side effects. Sometimes I think docs should have to try every drug they prescribe! Take care of yourself as well as your mom. Hugs to you both.0
-
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.
0 -
Hi All,
I would like to get your opinions on this. Being that my mom has LM, her MO was talking about it and saying that they could administer chemo through a port in her brain, but said "oh you're not gonna do that its just a bandaid." Even though I know this diagnosis is not good, he was basically saying now that you have this, once the radiation is done that's all there is. She has been off chemo for her liver since Dec. 14 due to a chemo break and then these new findings. He doesn't want to put her back on because he feels it's too much right now. Is it crazy or naive of me to want her to get different opinions due to this diagnosis? She IS very tired and weak since this 2nd round of radiation began, but still in pretty good spirits. We have an appointment March 9 at Dana Farber.
0 -
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.
0 -
Hi All,
I have followed the Brain Mets Sisters for about a week. A little bit background about myself: diagnosed with Stage IIA IDC (no node involvement, ER/PR+, Her2-, BRCA - ) back in 2007 when I was 30. I had bilateral mastectomy, followed by AC+T and 5years of Tamoxifen and Lupron.
Fast forward to Jan/early Feb, I went to see my primary for upper back pain that has been coming and going for several months, and subsequently discovered that I had pleural effusion. Long story short, CT/PET scan shows mets to right lung (pleural based nodules) and about 5 to 6 spots on my spine (T2-T6, T12 and L3). Last Friday, brain MRI shows a ~3.7cm tumor in my cerebellum and 3 other tiny spots (up to 4mm) scatted in the frontal brain.
I am interested in hearing fellow sisters' experience in 1) using SRS as first line of treatment for larger brain tumor (anything > 3cm) rather than surgery, 2) SRS first then follow by craintomy if tumor is not well controlled by SRS, and Or if choose surgery over SRS and why.
The reason I am torn between SRS and surgery/craintomy is that : we have yet to confirm my mets hormone status (biopsy to be done tomorrow), so my MO has put me on tamoxifen since early Feb under the assumption it's ER+. I have no idea how fast the lung mets is progressing. I really want to start doing something other than tamoxifen to have below the neck under control.
I feel brain surgery/craintomy would further delay the treatment plan, while I may be able to attack both brain and below neck together if I do SRS and Ibrance (or whatever chemo I may be on).
0 -
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
0 -
Hi, everyone. I'm posting for my sister again. In November they discovered brain mets (15+) and she did 15 rounds of WBR. Today she had her first brain scan, post WBR. Tomorrow morning we meet with the oncologist to discuss the results. She had a PET scan in December that was clean.
Obviously all we want to hear tomorrow is that all the tumors are gone. I'm not sure whether that's realistic or not? If there are brain mets remaining, what kind of questions should we be asking? Lastly, she's distressed that her hair hasn't started growing back yet. I thought the radiologist said it would take several months, but she'd love to know what your experience has been.
Thank you !
0 -
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.
0 -
i have 20+ brain tumors. Two of them are over 4 cm, located in cerebellum. I only had 10 sessions of wbr, nothing else. NO SURGERY, was told it was too risky and it would delay systemic treatment of bone and organ mets and they would progress. That was back in sept. I am still here 5 1/2 months later.
I'd get a second opinion if you can.
L
0 -
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
0 -
Lita,
Thank you for sharing your experience. I have read about your journey and just want to say you are amazing!
illimae,
I had another meeting with my RO and gained a better understanding of pros/cons of radiation vs. surgery. My RO has a much better understanding of breast cancer as well as my overall condition and is on the same page with me treating the disease systematically rather than taking the tumor out (especially i have no neurological symptoms) and delaying systematical treatment. I have decided to go with cyberknife for now. My RO also offered to collaborate with another neurosurgeon instead of the one I met.
A bit of rant: it was one of the worst surgeons i have met. he mentioned 2x during the meeting how he gave up lunch to meet with me. Hmm, I am no surgeon, but I have (we all have) given up lunch/moved things around to make priorities for our jobs. He wouldn't have made a big deal about it if he truly cared about me as a patient rather than statistics. Also he bragged about his low surgical infection rate as well. The whole thing was like a big WTF.
I will keep everybody posted.
Much appreciated.
0 -
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
0
