Brain Mets Sisters
Comments
-
Igloo, I’m sorry that LMD is confirmed, it’s a tough diagnosis. A friend of mine was diagnosed recently as well, she’s a few treatments in with the IT chemo and is tired but doing well. I’m always looking for positive results too, as I suspect I’ll join the club eventually. I wish your wife well and you too.
1 -
AJ - I will do that. I don't have a start date yet as my RO is trying to figure out when they can get me in the schedule and I was told that could take a few weeks.
1 -
@igloo89 Prayers for treatment plan that clears LM quickly and that you have many years of family life together. I'm so sorry your family is faced with this unexpected turn of events. Just checking if the medical personnel did more then one spinal tap? Not an expert, but I had read it usually requires a repeated tap to eliminate differential diagnosis.
0 -
@irishlove my understanding is that a lumbar puncture can often be a false negative, if it doesn’t pick up any cancer cells on first try. They did find cancerous cells on the first try so it doesn’t have to be redone.
1 -
Emac, I've had WBR. I did not experience pain, reading was hard to follow, fatigue settled in but lifted after a few weeks. I also recovered after starting to walk, chair or bed marching would be good if your balance. In your pocket for this.
0 -
Thank you for your encouragement Mara!
0 -
Inx,yes I was on Xeloda when I developed it. Were you on Enhertu?
Igloo, I am sorry you have to deal with it. I can not see your stats - is it Er+ or Her+?
Wishing you the best for WBR, Mara seems to be doing OK after it for years
0 -
Anybody here had a brain biopsy or brain membrane biopsy. My lumbar puncture was negative but I have another attack (can’t talk, I slur, numbness of my face and arm) MRI rule stroke, so they did a brain membrane biopsy , it’s positive. It’s been 2 weeks now, I’m not feeling better, there were good day and bad day. Fatigue and couldn’t sleep at night.
0 -
Anx, I’ve only had a brain tumor biopsied after it was surgically removed, we weren’t sure if it was necrosis or cancer, it was cancer. But, I think you’re referring to something else. I’m sorry for the issues you’re having and I know confirmation must be very difficult.
0 -
Anx, no symptoms. An unrelated tension headache lead to my original diagnosis of brain mets, other than that, it was the location of new mets (in ventricles) that were suspicious for lepto but numerous spine MRI’s and lumbar punctures failed to confirm, so far.
1 -
anx, why do you think you have LMD? I'm also concerned about an ongoing (several months) headache. I'm really afraid. I have a brain MRI next Tuesday and my PET scan next Friday. "Something" is going on—I just don't know what. I'm afraid of having LMD, too.
0 -
Have you spoken to your MOs about your concerns with LMD (Leptomeningeal Disease/Leptomeningeal Carcinomatosis), @anx789 and @sunshine99?
A 2017 article stated that LMD is diagnosed "via cerebrospinal fluid cytology for malignant cells, but neuro-imaging with high quality T1-weighted magnetic resonance imaging can aid diagnosis and localization" (Nayar et al, 2017). An updated systematic review from Italy showed that MRIs and cerebrospinal fluid cytology are the current best methods for diagnosis of LMD (Mollica et al, 2021).
0 -
I do have my next appointment with my MO on 4/3/24 after my scans on 3/19 and 3/22. She ordered an MRI because of the ongoing headaches. She's concerned with my rising tumor markers. I'm not panicking (yet), but also had a school classmate with Stage IV BC who also died recently after her cancer spread to her brain. So, of course, I'm thinking about all the things that might be.
I'm not usually a worrier as you might know if you read my blog. I'm just "concerned."
@anx789, your post was from Feb 23. Any word? (It's not allowing me to tag you. Sorry.)
0 -
It's understandable, @sunshine99. That fear is always in the back of one's mind, especially when you recently experience the passing of someone from MBC. Well we will hope for the best and await your updates once you have them. ❤️
0 -
I just wanted to say I had this scare and it turned out to be skull mets, tension headaches and MS. Did a brain MRI and a lumbar puncture, which was negative. Prayers and love for @anx789 and @sunshine99 and all fighting this disease.
Laurel
0 -
Thank you, Irish. It’s comforting to hear stories of others’ experiences. It gives me hope, no matter what the outcome might be.
1 -
@sunshine99 sorry for the late reply. Last January I couldn’t talk, I slur, and felt numbness on my right side of my face, arm, and arm. I went to the ER, they did CT scan and MRI, they ruled out stroke, they said I’m having seizure. MRI shows hardening of the membrane in the left side of my membrane. They did lumbar puncture, which came out negative. Two weeks later, I have another attack, went back to ER again, they decided to do a biopsy the membrane which came out positive for breast cancer.
0 -
@anx789 I'm so sorry, but glad, in a way, that you have some answers. What's the next step for you? I'm also on an anti-seizure medication.
(((hugs)))
Carol
0 -
i have an appointment with radiologist Onco this Friday. What anti seizure med are you taking? I used to be on Keppra but it me anxious so the change it to Vimpat.
0 -
I’m on keppra, too. I started with a liquid form since I was having trouble with pills due to the esophageal mets. No issues with the pills, thankfully.
0 -
What is wbr, my RO doesn’t know what it is. He will zap my brain.
0 -
Anx, WBR is whole brain radiation.
1 -
*cross posting on Stage IV de novo thread*
Hi everyone, I guess I will be joining this group. I was diagnosed with Stage IV de novo HR- HER2+++ with mets to bone and liver last August. I am currently on the Phesgo injection (Herceptin and Perjeta) and participating in the HER2CLIMB-05 double blind trial (Tucatinib or placebo pills 2x per day). I’ve also had a single mastectomy - no residual IDC, only two small high grade DCIS (10mm and 11mm) that were removed with clear margins. My latest PET scan from February showed no evidence of disease in my body.
I recently had a brain MRI as part of the HER2 trial and it seems as though I have two brain mets. One is 10mm x 8mm (was 2mm at the end of December but they weren’t sure if it was a met or not) and the newest one is 5mm. I guess this means I am on the placebo and not Tucatinib. I am assuming that there was already CNS involvement at diagnosis/on THP treatment, as opposed to true progression. Just waiting for the call for gamma knife.
Going forward, I can either stay on the trial since we don’t know I have the placebo for sure and continue to treat any new mets with gamma knife (which my MO says can be treated well for a long time - months or years), or I can be more aggressive and switch to Herceptin, Xeloda and Tucatinib. My MO says I can’t just be given Tucatinib by itself, which is unfortunate. I can expect a brain MRI every 3 months or so.
I asked my MO if she thinks there are more cancer cells circulating around up there just waiting to latch onto my brain and she feels that is unlikely as these are so small. I don’t know if that’s true or if I can expect more mets to show up down the road.
I will read this thread from start to finish, but if anyone has any experiences or thoughts they would like to share, I would appreciate it. Thank you.
0 -
@harrow We're so sorry to hear of your progression. You're sure to get wonderful support here! Sending big hugs to you.
—The Mods
0 -
Harrow, I was on Tukysa with Herceptin and Xeloda for 18 months and the combo didn’t slow down progression in my brain, as I still had a couple pop up every 6 months, so you never know. But, it would be great if you did have the placebo and the combo works great for you. Brain mets suck but yours are tiny and treatable. There’s also Enhertu and whatever else is currently in trials. I wish you well as you deal with this unpleasant setback.
0 -
@harrow i understand what a blow this is but there is absolutely hope. I was diagnosed with brain mets in 2017, in that time I’ve had gamma knife several times and brain surgery but I’m here, doing really well and haven’t had anything new pop up in my brain in 2 years, thanks to Enhertu. There’s no reason why you shouldn’t have similar or better results.
0 -
@illimae thank you for providing me with some hope based on your personal experience! I really appreciate it. This might be an unfair question to ask, but based on your experience with similar drugs as me, would you take a wait and see approach before switching to another line of treatment? I will be doing the gamma knife for the two spots, but I have the option to stay status quo, wait and see if more develop or do I try to be more aggressive and move onto the Herceptin/Xeloda/Tukysa? I am a bit hesitant because of how well H&P have worked for me. I want to get the most out of each line of treatment as I can. With no cancer in the rest of my body, I’ve read that can help with brain mets not coming back but I don’t know how true that is.
Keeping everyone here in my thoughts. I’m sorry we’re all here.
0 -
@harrow Knowing what I do now, I would have gamma knife and continue on H&P but since H&P doesn’t cross the BBB (blood brain barrier), I would switch to the Tukysa/Xeloda/Herceptin combo when/if new mets are detected in the brain. I had good periods of stability 6mo-1yr on H&P after gamma knife without anything new popping up. As much as I praise Enhertu, I’d try the combo first as you may get a good amount of control and time out of it.
0
