Brain Mets Sisters
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Just wanting to get the word out about a new weekly Zoom meeting getting set up. You do not need to be working to attend this meeting but the intention is to have a time that will work for those of us that can't make the current Zoom meeting times that are held during the work day. Here's a link to the thread for the input on a time and day that works for you: https://community.breastcancer.org/forum/8/topics/882768?page=1#idx_3 . Thank you!
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Hi everyone,
I've been reading a lot of posts in this thread in light of a lesion found in my my mom brain MRI. For context, she was dx with MBC last month with mets to her lungs and bones. She's HR- Her2+ so I asked her oncologist for a brain MRI despite no symptoms. I admit, I am spiraling a bit after hearing about the results but also wanted to prepare for questions for the radiologist we're meeting tomorrow.
My understanding is that with one lesion, we'd probably wouldn't get whole brain radiation. However, I am bit unclear on the other targeted radiation treatments. Can anyone with brain mets give me rundown about the options that they had?
Additionally, my mom is on her first line (just one treatment so far), would it be a bad idea seek a second opinion? Or should we be moving fast. I was in the process of looking at second opinions but our local cancer center moved very slowly.
Sorry for so many questions!
Rena
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Whole brain radiation is dependent on how aggressive the initial cancer is. If she is IBC, she may be recommended WBR to avoid rapid spread throughout the brain but she may also be offered local treatment. Local treatment is faster to recover from but WBR is also able to be recovered from as well.
I will say that I had WBR 6 years ago almost and I am still strong and healthy. I did have spot treatment in 2018 but nothing since. My initial met was 10 cm and that was huge. With inflammatory breast cancer and how rapidly the met grew, they did the surgery first then radiation and expected it to return as there was still a little cancer left around a blood vessel. After a few weeks of being quite fatigued after surgery and then the radiation, I recovered quickly and lost nothing in my cognition.
The reason I bring this up is if she is told she needs WBR, do NOT panic. Get all the information and decide what may be best. Ask why if you don't understand the reasoning. I am so sorry you and your mom are going through this. Treatments are much better than they used to be and there are also drugs they can use to get past the blood brain barrier plus with WBR, the barrier allows some of the regular treatment to pass into the brain. Stay off google and ask lots of questions to get more direction.
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Hi Mara,
Thank you so much for the detailed explanation. I tried to calm my mom down when we found out but it’s easier to give advice than take it (at least for me).
Thanks again and I hope for your continued stable status
Best,
Rena
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mbccaregiver, like Mara, I’m pretty healthy and strong too, however, I have not had WBR. I’ve had local treatment (gamma knife) 6 different times since 2017 when a few tiny new spots showed up. Recovery from that radiation is just a day or two. If you use the search feature here and look up gamma knife, you may find a detailed description that I wrote up last year, I think. Please share this with your mom and remind her that no matter what “google” says, many of us are living well with brain mets for several years. She’s at the worst of it right now, things often improve once chemo gets going and after with Herceptin alone.
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Hi Illimae,
Thank you for responding, I will take a look. But that is very reassuring.
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hi
I had gamma in January to 2 spots. The occipital lobe looks like necrosis and was giving me horrible headaches. I went on dex and headache’s subsided but feel so dizzy and blurry. Does anyone have any experience w this?? I feel like I can’t even go on a walk without feeling weak. Thank you.
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Hi everyone,
So I just spoke with our RO, he is recommending we do SRT over 5 sessions for a lesion that is 1.2 cm by 0.9 cm. I was under the impression that these are usually done as a single session but he said that he preferred lower dosages over a period of time. Has anyone else done this?
Best,
Rena
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Rena, when I had my spot treatment, I was given 5 sessions for that spot in 2018 around easter.
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mbccargiver, that sounds reasonable. I had a single high dose session each time but mine were smaller 6mm-8mm usually.
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Thank you Mara and Mae! I appreciate the quick response. I hope this works and we can see a reduction without it being to taxing on her.
Best,
Rena
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Summerspring, I did feel slightly dizzy while I was on long term steroids for both craniotomy and then treatment. I was more careful but still walked. If you want to stay fit or are worried about balance, a walker can be of tremendous help, folds up and would stay hidden when or if you don't need it.
If you are feeling week, start with several short walks throughout the day. I used to walk very long distances but since last summer when I almost passed out and had to beg for help in front of a bank, they brought a chair and water, I stick to short walks using buses in between if going somewhere. Walk in your house. Reason I am mentioning walking is steroids can make our muscles feel weaker but using the same muscles strengthen as well. Sit in a chair lift and move legs and arms, that keeps you safe while giving you energy. Focus on higher protein meals as well. Beans can also help along with cooked spinach, can be chopped up, beans can be snuck in many different meals. Season as you like. These will boost red blood cells and can help combat some dizzy or lightheaded feelings. These are things that help me. My balance is not the best but I have adapted over the years.
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thank you Mara!!
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it’s been a year since I had a craniotomy which had cancer grow back in the dura six weeks after. I also had a grand mal seizure and broke my shoulder 😔 I then went onto Carboplatin after a trial of Olaporib and Keytruda that failed in January. And now I’m losing vision in the left eye and have ear and temple issues near where the craniotomy was. I only had 7 cycles of Carbo
Being given the option to move to Everolimus aka Afinitor.
Has anyone had any luck with brain Mets and that Afinitor? Or remember anyone who did ok on it for a time?
Thank you.
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Mara, So sorry to hear that you are having problems with mobility. I am inspired by your willpower to keep moving despite the setbacks.
Ashlyn, I haven't been on Everolimus. My MO didn't think it would work for me. I also don't have anything to take it with since I have already been on Tamoxifen, Letrozole, Exemestane, and Faslodex. I see that you have been on those too. Will you be taking it as a monotherapy or recycle a previous ER treatment?
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So here I am joining you - after 3 years of MBC (her2+, chest) and 10 days of headaches and throwing up i was diagnosed with 1 solitary lesion up to 4 cm in my cerebellum. Medicated , can still work , can not drive. Meeting neurosurgeon on Monday.
I would be very appreciative if you told me all you know with regards to classic brain surgery vs radiosurgery vs proton beam therapy.
As you understand it is about life and death literally so quite important .
Wishing all well.
Me.
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I will use both my craniotomy and my 2018 radio surgery. For me the craniotomy was fairly easy, no issues after besides sore feet from walking around the hospital without shoes, was full of energy I needed to burn off from the hospital. My tumour was 10 cm behind right ear. I was in and out of hospital in 3 days, motivated by the fact the food was terrible. My recovery from the craniotomy did not give pain really, just weird sensations which I can only figure was the bones and nerves healing I think.
If you are only having the tumour area treated with radiation, it should not offer much in the way of side effects, at least that was the case for me. Best part of the treatment was coming off steroids, in both cases the surgery and radiation to just the surgery area did not offer side effects.
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anotherone,
I had over a dozen tumors in my brain so a very different situation than yours. I had WBR and twice have zapped tumors that have returned over the years. So far all looks good.
Hugs, Susan
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thank you sisters
Having second opinion tomorrow and potentially an operation the day after tomorrow - my first opinion was that it is too large to do radiotherapy hence an open brain surgery which is scary but far more scary for my dependants - I am in a good position at the moment of my daughter being almost 18 and my bf doting on me so do not care about much
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Dear all, encouraging results on TDXd in TUXEDO-1 PH2 trial: https://www.nature.com/articles/s41591-022-01935-8. Just check the waterfall plot! I think tucatinib just got a rival...
Saulius
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Saulius,
Fantastic news! Thanks for sharing.
Hugs, Susan
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Thank you SusaninSF... I personally know a heavily per-treated young person who does well for 7 months on TDxD after ~70 mets in brain removed by gamma-knife (3 surgeries). Let's hope she continues like this.
Saulius
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Saulius,
Wow! 70 brain mets zapped with gammaknife! That's even more than LFF. Glad your friend is doing well and responding to Enhertu.
Hugs, Susan
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Wow, I have a hard time imagining that. I had a 10 cm tumour removed with craniotomy and whole brain radiation and only had one or two minor spots that were destroyed with a radiation of the original surgical site. I was told to expect recurrence originally since there was part of the met wrapped around a blood vessel. Still, extraordinary that the brain can be treated for so many now where I think in the past, that many would likely have received WBR. I understand that WBR was best for me with IBC and HER2 pos cancer, but if I could have had gamma knife, I would have gone for that instead.
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Dear Mara, she had WBR with a few spots but then recurred with 15 mets, and got gamma-knife (GK), then again 15 mets, and then 40, and all of them were treated with GK until she got Enhertu (it is not compensated here, so she had to look for funds)... I have greatest respect to the planners/radiologists/technicians in Kaunas cancer clinic who did all the planning and treatment with GK. We'll see how it all goes but I am hopeful...
Saulius
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ok , info for the who will have brain surgery.
I had posterior fossa (cerebellar) tumour enoucleation open surgery.
Depend very much on your work; the first that I was at work was 4 days after for a few minutes (but could have been longer if needed).
Then 8 days after for a few hours (4 I think), then 10 days after for 4 hours.
So depends very much on your work and on site of operation of course and whether you can do phased back to work or they want you full time from day 1 - if the latter I would say book 3 weeks off.
I was able to leave the hospital on Wednesday while operation was on Monday. First week most of the time is rough/ish so you have to be careful.
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Hi everyone, I (30,F) post on these forums for my mom (58) who is not comfortable using the site. She was diagnosed with MBC last November with spread to her liver and bones. She's been on xeloda since march 2022 and has been doing great.
This past weekend she began suffering from aphasia and had a full blown seizure. We've since received her MRI results that state "findings are most concerning for dural metastasis with leptomeningeal involvement." I know lepto mets are bad news, and I'm trying to prepare my younger brother(27) and father for what's to come next. I was just looking for any experiences that anyone on the forums may have had with leptomeningeal mets (treatments, radiation, etc)
I haven't been able to update the signature line with my mom's info but she is ER+/PR+/HER2- (IHC +2). She has an esr1 mutation so she's resistant to endocrine therapy.
Thanks for anyone's insight.
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Concerneddaughter, while “suspicious” is definitely concerning, it is not confirmation. Typically, a spine MRI and/or lumbar puncture would be done next to be sure.
I haven’t actually been diagnosed with lepto myself yet but I’ve had suspicions finding and all the relevant tests 3 times in the last few years.
If confirmed, WBR is a standard option but if your mom is HER2 low (IHC2+), Enhertu might be an option as well.
If lepto is not confirmed and brain mets are few and small, then targeted radiation like gamma knife might be an option as well. A neuro oncologist and neuro radiation oncologist will have recommendations once all tests have been completed.
Having had the lepto scare several times now and losing my shit before I got definitive results, I wouldn’t try to prepare anyone for this just yet. Good luck to you and your mom.
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Thank you for straightening that out Saulius, good to know so many spots could be treated post WBR.
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Illimae - you just made sleeping tonight a little easier. I just get my first “may represent leptomeningeal
metastasis.” Mri report and I’m freaking out!! I had Cyberknife to my brain Mets earlier this year and Gemzar seemed to be keeping the other Mets under control but now this popped up
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