Brain Mets Sisters
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mara, you are such an encouragement in so many ways. Thank you!
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Good morning everyone, Mr. Igloo's wife. I wanted to thank this board for existing and providing us with good news in light of a very dark situation. When my oncologist dropped the news about my brain mets, she said the prognosis was two years. However, I achieved PCR, have no mets neck down, and am asymptomatic. We are frustrated she gave me such a dire timeline when I have read many uplifting stories of women who lived years with brain mets. We are excited to see what Sloan Kettering and MD Anderson have to say and hope to add positive news moving forward.
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Jhill, I go to MDA and was never given a timeline. I had a single bone met at diagnosis, it healed and still have no progression below the neck. It’s been 6 years with brain mets and even with suspected lepto (cancer in the brain/spinal fluid) my neuro onc always said that no matter what happens they’ll take care of me. Her name is Dr. Yeboa and I just love her, she’s talked me off the ledge a few times, lol.
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igloo, any questions, feel free to send them my way. I am in the camp it definitely works and can be a long term solution as well. It all depends on location of mets etc. Any issues Ive had with coordination etc I blame on being on meds almost 9 years, not so much the brain met as that met was not in a location that has anything to do with mobility.
I am doing pretty well today. Not sure what if anything I will do today. Going to make my own egg sandwich today. Been eating a few of those from McDonalds but should make my own as that is cheaper and I have the english muffins and eggs to use. Still have some sausage patties to use too. Still working on using up groceries before buying more. Other than that, not much else going on. Debating a bus ride to the mall for a walkaround. I want to avoid buying too many more groceries, maybe a couple of meat pies but that would be it. I blew the paratransit, phoned too late for the hospital trip, will phone earlier in the morning.
I am in everybody's pocket and hope you all have a really good day.
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Why do some people give us timelines? I still don't have an expiration date on my forehead. I remember being told, when I was first diagnosed with Stage IV, that this was not a death sentence. It felt like one, though.
I usually roll my eyes, or snort, when I watch a movie and the doctor comes into the patient's room and tells them they have cancer, and they have six months to live.
I did get a little freaked out when a nurse mentioned the word "palliative" when I was there to set up my radiation treatments for the bone mets. It helped to learn that "palliative" just meant that it was not intended to cure, but rather to manage the symptoms.
You're in a safe place here.
Carol
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Welcome, @jhill7389! We're glad you found us!
Thank you for sharing your story with us. We understand the frustration that may come with receiving challenging news, and as you can already see, we're here to provide support and encouragement. Please, let us know if you have questions for us, Mods
Thank you for being a part of our community, and we look forward to hearing more from you soon!
The Mods
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I agree with the sentiments here about timelines. I have 6 brain mets and my RO has been very positive about the fact that they are small and I have no major symptoms from them. When I was diagnosed with mets to the pleura of the lungs (lymphangitic spread) my MO gave me a timeline of 6 mo to a year. That was in July so I am almost at my first "expire by" prognosis. I no longer believe it. I am meeting too many people here and and at the cancer center who defy the prognosis odds to think that anyone can predict how long any of us has. I used to work as an ICU nurse and that led me to conclude nobody knows how long they have or what their circumstances will be, whether we have cancer or not.
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Just wanted to bump this thread. Hope you all are doing well and enjoying a peaceful holiday season as much as humanly possible.
My better half, jhill7389, has completed 7 wbr treatments. It hasn’t hit her too hard yet. Sometimes her vision is a little blurry and she’s starting to get sleepy enough to sleep 6-7 hours a night. Still up early with anxiety but its something.
We go to Sloan Kettering in about 10 days to level up our treatment team. I’m hoping wbr and a treatment like Trodelvy can hit the bbb while its weak. Any other treatments effective for tnbc? And should she try to get back on Keytruda to keep the rest of the body clear?
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igloo, thank you for the update on your better half. I have no advice, but just wanted to send you love and support.
Carol
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Hi all! Popping in to share this Research News from SABCS 2023 that you might find helpful as it specifically calls out a benefit for brain mets:
We hope you find this helpful!
—The Mods
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Hello again. We learned during a meeting with my wife's oncologist that her brain tumor resection expressed 5% positivity for Estrogen Receptors and 1% (almost negativity) for HER2 Receptors. Because she has been triple negative since her diagnosis, estrogen receptors are an entirely new world for us to learn about. Does anyone on this board have experience with ER-low positivity? Would endocrine therapy, Ibrance or another chemotherapy be worthwhile? These are questions we plan to explore over the next few weeks, but I was curious of your opinion. You all are the experts in a lot of ways.
Secondarily, with only 1% expression, should I give up on my hopes for using Enhertu on these brain mets? It's still technically 1+ but I realize its just a sliver. The good news coming out about that drug had me excited, but if its not possible, we'll find another way to have success.
Our primary oncologist wants to start Jhill on Xeloda before the new year, though she is deferring to the expertise of Sloan Kettering who we fly to see next week. Either way, the ball will soon be rolling on a treatment strategy. Thank you all for your kind words and allowing me to post on Jhill's behalf from time to time. I hope you have a drama free holiday season with lots of loved ones.
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Its quiet so i’ll give a small update. We’re in New York and had a consult with Sloan Kettering. They want my wife to start a 7/7 schedule of Xeloda as the first line of treatment, saving Trodelvy and Enhertu for later options. She got a pcr in August and had a PET in October. She has one more PET next week and we’re hopeful that will confirm that everything below the neck is clear. Then its just a matter of a) hoping the wbr and Xeloda work a very long time and b) fighting any reoccurrances as quickly as we can. She is tnbc so options are limited.
last thought but its difficult to know how hopeful to be when both wbr and xeloda have such variance. Both have people saying “it didn’t work for me” and both have people saying “it saved me for years.” So we’re holding our breath, forever if we’re lucky
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Hi there, @igloo89! Thank you for the update. Wishing your wife all the best as she begins the new treatment with Xeloda. Here's a discussion we thought you might find interesting: Xeloda and TNBC. Feel free to jump in and say Hi!
Best wishes,
From the Mods
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has anyone had lower back issues, possibly related to leptomeningeal disease or possibly just sciatica/a herniated disc?
my wife is having trouble walking, with numbness and pain in her right butt and leg. A pet scan showed irritation but no bone mets, but we’re working on a spinal mri as soon as possible.
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My latest brain MRI showed that one of my brain lesions has doubled in size. The radiation oncologist wants to do stereotactic radiation to zap it. I’m going on a 3 week vacation starting on January. He agreed to wait until I’m back. But tumor marker test (CEA) has also doubled and is really high (20.3). Wondering if I should get it done before the trip.
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AJ, i’m just a caregiver, but if it was possible to do SRS before vacation, I would do it. That way your mind can be more at ease when you’re trying to relax.
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Going in to get stereotactic radio surgery tomorrow! Wish me luck!
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Best of luck, @AJ! Sending you positive vibes.🌺
The Mods
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Hello, anybody here with LM? Last weekend I went to ER because I couldn’t talk, I slur, and I numbness in my right face and arm. It lasted for 1/2 hour. They did an MRI and found a hardening in my left brain membrane (4 mm thick) They rule out stroke, they said I had a seizure. They did a spinal tap and results are not in yet. They send me home with anti seizure med, today I also started Xeloda. This is really devastating and depressing.
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We're so sorry to hear this @anx789, we understand how devastating and scary this is. We have a few threads that would be helpful for you to read through, it's been discussed several times in this and other stage IV threads. We'd also like to connect you to another member who was recently diagnosed with LM, we'll send you a PM with some information.
We're thinking of you and we're here for you!
The Mods
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@anx789 I just wanted you to know I'm praying for you and hope you find a treatment that works. I've had a spinal tap checking out various diagnosis. I was anxious and depressed but fortunate that my brain MRI and spinal were negative. Please know we are all in your corner! Hugs, Laurel
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Me. Having intratecal chemo and Enhertu.
Not nice but it is not over until it is over
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@anotherone I pray that you have a long run on your meds and the chemo clears the LM quickly. Sending strength and comfort to you.
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@anotherone were you on Xeloda?
@irishlove thank you very much!
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I have a question for the group. I got the results of my MRI yesterday and it's not good. When the report read "multiple lesions" it meant that my scan looks like someone took white paint and sprinkled it on the image. I couldn't even count them all. Fortunately they are what my RO called "tiny". My options were to do WBR starting immediately or as soon as they can fit me in the schedule or to wait and watch them until I had symptoms and then do WBR. The second option didn't make sense to me. Has anyone here had WBR? I am going to be doing treatment Monday through Friday for 10 weeks. I'm just not sure what to expect in terms of side effects. Thanks. I'm a little devastated right now.
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@emac877, we're sorry to hear about your MRI results. While WBR can be intense, we know that some people have minimal side effects, and we hope this is the case for you!
Sending you strength, and positive vibes! Please, let us know how you're doing, We are thinking of you 💌
The Mods
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Since my last post, my wife has been diagnosed with Leptomeningeal Disease. Its mostly concentrated at the base of her spine, in the cauda equina region. She has significant numbness/weakness in the pelvis and feet, some headaches and blurred vision. MRIs of the head, thoracic and cervical spine all were clear, other than the already treated lesions in the brain that are showing reduction from WBR.
She starts radiation to the lumbar spine tomorrow, and we're hopeful that we can move to intrathetical chemo and/or a clinical trial soon. We've reached out to MD Anderson and Sloan Kettering for additional assistance. Very challenging. Very sad. Very scary. I just want to keep my family together with good quality of life for as long as possible.
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