Brain Mets Sisters
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Hi Mara,
Thanks so much for your kind comments. I also had skull mets at the beginning. One has shrunk and the other has been "stable" for 4.5 years. I was fortunate then that neither had invaded the dura. I will be so happy to get through tonight and have the MRI tomorrow.
Your kindness is appreciated.
Nancy
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Hi,
I've been doing so well, but just got bad results from a brain MRI. I was told I have leptomeningeal cancer and this "changes the prognosis." I was feeling so well and not expecting this. The next step is whole brain radiation.
I feel so so sad. My youngest daughter turns 3 next month. My 6 year old just had her first in-person day of kindergarten today. It's just too soon.
Any words of advice or hope would be appreciated, thanks.
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Hi SuperDeNovo,
Oh, I am so sad to hear of your news. There are a couple of women here who are HER2+ and have had brain mets for years. I hope that they will jump here to offer you some reassurance. I have been living with bone and liver mets for more than five years. I actually just got home from a brain MRI - I would switch places with you if I could. I'm going to be 60 soon and my only son is grown.
I will be thinking of you and sending love and positive thoughts to you. There is also a new drug for us HER2+ gals that does pass the blood brain barrier. Not sure if it would apply to you, but you might ask your onc about Tukysa.
Take good care and please let us know how you are doing.
Love,
Nancy
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SuperDeNovo, I’m sorry to hear your news. I also have a 3 year old son so I get what you are feeling. My MO told me he has had success with combining abemaciclib and Keytruda for leptomenigeal mets. This is off label use so if your insurance doesn’t cover you/your mo can ask Merk for compassionate use. This combo may or may not work for you, but at least it may be an option to consider?
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Superdenovo, I can understand what you’re feeling as I’ve had the Lepto scare 3 times already. I know it’s different when it’s confirmed but I can tell you that I’ve had several discussions with my neuro onc on this and here’s what I’ve learned.
There’s are options.
WBR is typically the first one and is often successful, at least for a period of time depending on your individual response.
The new combo of Herceptin, Xeloda and Tukysa (which I am on) has shown to improve treatment of and length of time between mets.
Ommaya reservoir, this is a intracranial port where Herceptin and or other chemo meds can be delivered directly to the brain via infusion.
My neuro onc at MDA told me she has a few patients receiving treatment through the ommaya port for about 7 years so far.
I learned today that I have 2 new spots in my brain, so likely gamma knife for the 6th time, it’s getting old but I’ve been down this road before.Wishing everyone well tonight
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Thank you for your replies and advice. It gives me glimmer of hope to hear about the Ommaya port potentially working for so long.
I feel so shaken by this. I felt "safe" that I had a few years, but that has been taken away from me. I start WBR (which terrifies me) next week, and then Herceptin, Xeloda, and Tukysa. I started with 14 spots in my brain that were all zapped and looking clear, and somehow in the 3 months between scans I went to innumerable spots and leptomeningeal disease. This is so hard.
Illimae, good luck with your gamma knife.
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Superdenovo,
Good luck with the HXT combo. I found it tough at first with nausea and diarrhea but Promethazine and Imodium solved those issues and I am doing well now, pretty much normal.
Just spoke to neuro onc and the 2 new spots are in a ventricle again, so Spine MRI is being scheduled to check for lepto, ugh. Doing my best to not let this throw me.0 -
I will be in your pocket until you find out Mae.
Superdenovo, I can speak to the WBR end of things, it will likely make you very tired for a long while which is quite normal but once you start recovering from the fatigue, it is usually a quicker recovery. If you are able to and no mobility issues, walking is very beneficial, even 5 mins at a time to help with some energy. Good luck.
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Superdenovo,
I'm so sorry you're here. Our timelines are so similar- I was diagnosed age 40 in October 2020, also with so many mets. I was doing well until we checked the brain last month and found "innumerable" spots, no symptoms though. I too was terrified of WBR but am just over a week out from finishing and doing well. I've taken Mara's advice and walked everyday, although during WBR I had to reduce it a bit, as it seemed to make nausea worse, but I'm back at it now. I start HXT when I return from a much needed vacation. This is my first post, but this forum has brought me so much comfort this last month. I hope you find it too. Thanks everyone for sharing your experiences. I am in your pocket too, illimae, and just down the road in San Antonio.
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It's amazing how women pull together for each other. I will be thinking of you too illimae. Your posts have brought me much comfort since I joined in 2017. Prayers and positive thoughts all-around.
Hugs,
Nancy
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Thank you Mara and everyone for your advice.
Kikomoon, thanks so much for posting. Your words bring me so much comfort. I think it's just the feeling of not being alone in this.
Best wishes to us all.
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Kikomoon, howdy neighbor!
Nowardron, thanks so much, I appreciate it
. Super, you’re not alone here, we got your back.
Mara, as always, thanks for pocket duty, experience and motivation.
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SuperDenovo – My heart is breaking for you! It's so unfair that you're dealing with all this at such a young age and with very young children!!! What a terrible shock to develop leptomeningeal disease when your previously treated mets were dead and you were feeling well. I know several women who have had whole brain radiation and are doing very well many years later. The new Herceptin, Xeloda, and Tukysa combination had remarkable trial results, particularly in the brain. I was on Enhertu for 10 months which has also crosses the blood brain barrier. I'm HER2 low and HER2+ women are having even more remarkable results on Enhertu. It's a VERY promising drug!
Illmea - I'm sorry that you have two new brain mets and hope that gamma knife will take care of them. I hope that your spinal MRI will be negative for leptomeningeal disease!! I've appreciated all your posts. Thanks for sharing your knowledge, experience and support!
Kikimoon – I'm so happy that you are recovering well from your WBR treatment. Good for you for walking!
I'll share my experience in case it might help someone else. I had 6 brain mets treated with Cyberknife in April 2020. Everything looked dead until a recent brain MRI showed a white ring around one tumor, actually the ring initially showed up in Feb 2021, but it has increased in size over two brain MRIs. Apparently it is very difficult to distinguish between cancer growth and radiation necrosis. In my case, the neurosurgeon and Cyberknife doctor believe that it is cancer. Some reasons included: increased blood flow in the area, nodular appearance, and a cystic tumor type which doesn't respond as well to Cyberknife. Also none of my other treated tumors have developed radiation necrosis, so it is unlikely that only one tumor would respond that way. Some people consistently develop radiation necrosis in most tumors treated with Cyberknife and it shrinks over time. Anyways, my doctors recommended surgical removal or more wait and watch. The ring could be part radiation necrosis, so they don't want to treat it again with Cyberknife. I decided to have it surgically removed on April 26th. I didn't want to wait for it to get bigger. I'm doing my best to feel grateful that the tumor is easily accessible and that the neurosurgeon is willing to remove it...
Sending prayers and hugs!
Theresa
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Theresa, I had the same situation in January 2020. After a craniotomy, the area removed, once thought to be likely radiation necrosis ended up being mostly cancer. The idea of this surgery was certainly scary but it ended up as the right decision. Good luck and easy recovery,
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Theresa, I will also add my thought about the surgery. My tumour was 10 cm and I had the surgery on a Friday and was out of hospital by Monday (a goal I set for myself). I was already shopping at the grocery store for snacks as steroids really increased my appetite, staples and all.
For myself, the easiest treatment for me was actually the craniotomy. I healed quickly. I found radiation more tiring.
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Mae, I will say it at the risk of repeating myself, in your pocket until you find out about mets in the spine. Bringing the booze and barbecue if that's your thing.
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Illimae - Thank you so much for sharing your very similar experience! Did you have more Cyberknife to the tumor bed after the surgical removal? Sending you very best wishes tor negative leptomeningeal disease in your spinal MRI and effective gamma knife of the two new brain mets.
Mara - It's very encouraging that you healed so quickly after having a 10cm brain tumor removed!!! Thank you fo sharing your experience!
Theresa
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theresa45, not cyberknife but I did have 3 sessions of fractionated radiation to the surgical site (cerebellum) and more than a year later, I’ve had no new mets in that area, so that’s good.
As for the lepto, I’ve had suspicious mets 3 times, each time ruled out. My neuro onc is encouraged by the history, as am I but I can’t help feeling like it’s just a matter of time. Last time she said, “look, I’ve known you and treated you for years now, I am totally invested, if it is lepto, we will take care of you”. That was just what I need, no doom, no sugar coating, just dedication and a plan.
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Illimae - I'm very happy to hear that the tumor you had surgically removed and treated with radiation has not developed new mets in the year since treatment. Your neuro oncologist sounds perfect! We can't ask for anything more than honesty, dedication and a plan. Thanks again for sharing your experience. Wishing you the very best! Theresa
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thinking of you all.
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Thinking of you illimae. Keep us posted. I just started tukysa with xelida and herceptin. My onc changed from Herceptin and perjeta to that. Just wondering, if Herceptin wasn't stopping progression, why is it used along with the tukysa? I see onc in two weeks, and can ask, but wondering if anyone here knows?
I also have a separate ER+ MBC in my right breast thats progressing, pluera in the lungs, but I still feel fine. I'm a mess.
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Elenas, Herceptin is still the best medication for us HER2 patients, so if it slows progression, that is still a benefit. Tukysa is also a HER2+ med but I crossed the blood brain barrier, where Herceptin itself does not. I think of it as Herceptin for the body and Tukysa for the brain. And the Xeloda is a straight chemo, regardless of subtype that also crosses the BBB.
My spine MRI is scheduled for next Monday, so I’ll post an update soon after. Thank you all for the support. I have my moments of uneasiness but manage to remain mostly calm.
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Mae, I'll be in your pocket for Monday for the MRI hoping the best for you. Bringing whatever you need foodwise as well. I also appreciate your explanation of the drugs because I was not quite sure why all three are given together, now I understand it better.
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Hi, I started whole brain radiation today and I'm already experiencing nausea and headache. Has anyone else who did WBR experienced this? My first treatment was only 5 hours ago. I have 9 more treatments to go and am a bit worried...
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Superdenovo, I haven’t had WBR but from what I’ve read, those side effects are pretty common. Are you on Dex or some other steroids?
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No steroids, I was hoping to avoid dex and nobody mentioned that I should be taking it... just messaged my RO to see what she says.
I just researched and saw some people take Boswellia serrata , 4200 mg/day, and it seems to help. So I might try that.
I feel terrible. Hope it isn’t like this for every session. Also I hope it’s not the cancer progressing andmaking me feel this way. Ugh.
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SuperDeNovo - I'm sorry that you're feeling terrible! Of course you're concerned with 9 more treatments to go! I haven't had WBR, but I had Cyberknife to 6 brain mets in April 2020. I had 5 sessions total and was given dexamethasone each treatment day to reduce swelling. I seem to remember that it was a fairly low dose (~5mg) and I didn't experience side effects. I usually try to avoid additional meds, but they did not give me a choice... they actually watched me swallow it. I had my pre-op meeting today for my craniotomy on Monday (one of the six previously treated lesions has a suspicious ring around it, so we're removing it). The neurosurgeon said that I would be put on steroids and taper down over a week. He said that I might feel better 3 days after surgery and then feel worse when completely off the steroids. Best wishes for effective treatment and gentler side effects! Hugs!
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Theresa, good luck with your craniotomy, I had a rare complication with mine but aside from that recovery was much easier than I expected.
Superdenovo, I had some bad nausea from a chemo pill but promethazine solved that problem the first day I took it, might be worth asking about.
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Superdenovo,
I’m sorry you’re feeling bad from WBR. The evening after my first session I had a horrible headache that required ibuprofen and silence/darkness for 3 hours. After that I didn’t have many headache issues, but walking and housework seemed to make it flare up, so I had to take it easy for awhile. The worst part for me was nausea but I have 2 meds which helped (Prochlorperazine and Ondansetron). RO said dex if it got worse. I hope you find some relief and will be thinking of you.
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Hi! I do not have diagnosed brain mets and really don't think it's spread to my brain, but I am supposed to have a brain MRI on May 5. The reason why is because I ended up in the emergency room with two separate issues, I think. One of them was feeling very “wonky" in my head. The symptoms I'm having are just a weird pressure, not a total headache per se, but a pressure, and my eyes feel very funky and not able to fully focus. I have not fallen, but I'm not able to drive or watch my grandson until I figure this out.
I have lobular, so the chances are very low that it's spread to brain. When the MRI comes back negative, positive thoughts there, I don't know where to go next to figure out what's going on. This just started around April 7th or so. I just want this feeling to go away.
Any thoughts would be helpful. Medication has been the same, so nothing has been added.
Also, it’s constant whether I'm sitting up in bed or walking.0
