Brain Mets Sisters
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Can anyone share their radiation stories? Hair loss? Fatigue? Will be receiving SRT treatment in the next week or so. I am 5 weeks out from craniotomy. The whole Covid-19 has slowed down all treatment. I’m anxious. They removed a 3 cm tumor and just found a deeper 1 cm lesion in the same spot, which will be treated like the initial one. I’m trying to stay calm, I mean, the thing is already there right? But I just keep on thinking everything is taking too long and Ineed to start all my other treatments too (TDM), etc. Just when I think, I am somewhat okay with all of this, all these negative feelings start to creep in.
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HelloSo I had a mask made to fasten my head during treatment . They gave me something to relax and
then then administer a steroid shot . Then you get your head fastened down to their procedure table . They did radio therapy for about 45 minutes. They played my relaxBig music and I visualized my complete healing . my hair cane off in a strip where the skull was radiated but not my whole head .
all it was easy for me . I hope yours goes very smoothly! it was so good to get rid of the few remaining maglignabt cells ! I wish you and East time !
sincerelyMarcia
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Thank you MarciaM, I hope it goes smoothly too. I just keep on thinking I’m running out of time. I’m Her2+ and this thing spreads like fire. Being home all the time doesn’t help either. Too much time to think. But thank you, I will keep everyone posted. Xx, hope you’re staying safe.
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Toto- I’m having cyber knife for the first time Tuesday . First of I think 6 sessions. It’s new to me. Previously, I have had 5 cyber knife treatments with the halo. I hear this is easier.
I will be thinking of you.
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good luck to you leftfoot, how long have you had brain Mets? I’ll be thinking of you too. I hope my napping is done this week and I can start next week. The anxiety is real!
Hope we both have easy upcoming weeks. xx
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I was diagnosed in dec 2012. I had gamma knife and was NED for 5 years. The last few have been a struggle but I’m still here.
Hope that gives you hope Roro.
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Wow Leftfoot, thanks, it does give me so much hope. I’m nearly two months into diagnosis and still scared. Just weighing my options now for chemo treatment. Hope it gets better for you.
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Roro, we can all empathize with the stress a brain met dx gives at only two months. Hugs going out to you. If it is any encouragement, I have been Stage IV for five years. Official dx was 4 years as the brain mets were there from the start according but too small to see until they grew. I of course had whole brain radiation then more local rads in 2018. Nothing since. Still in good health so far, going day by day with cancer and everything else happening in the world. Good luck.
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hi Mara, thank you. You’re incredible and thank you for your kind words. I can only hope to see many more years and hope new treatments come our way. These two months have been crazy, specially with everything else going on in the world. I also suspect my brain Mets where there from day 1 but too small to notice. But here we are, it is what it is and I am learning to accept things and move forward even on my really dark days. Xx
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Roro, I had Gammaknife to my tumor bed, after the craniotomy, 5 years ago. I am still here. It truly gets easier after the intial few months. Hang in there.
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Hi there,
For those who had WBR or any type of brain radiation *without a craniotomy or tumour excision* how long did it take for the radiation to start working/decrease symptoms (if you had any)? Is there a range? At what point do we stop hoping that the radiation is doing something? My mom received palliative radiation to her brain so she likely won’t be having any follow-up scans, we were told to just wait and see if it helps her symptoms.
Thanks,
Bonnysgirl
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hi Goodie, thank you for the encouragement. It’s been a rough 2 months, so many tests and surgeries and procedures over all, but trying to accept this and move on. I know it’ll get easier. X
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hi there! My mom had a seizure in December 2019 and they found her TNBC stage 4 mets to lung, skin and bone found in February 2019 had spread to the brain and caused the seizure. She had 11 mets to the brain, most of them small Two large ones—almost 3 cm. She therefor had wbr in January and a follow up mri in February which showed shrinkage. Then she had an mri yesterday April 15, 2020 which Showed growth and a lot of swelling. She also has had the beginning of seizure symptoms this week so they started her on a steroid to help decrease the swelling. Because she has growth the radiation oncologist is debating surgery to remove the largest tumor (About 3 cm) causing the seizure like symptoms and this will make more room in the brain decreasing the swelling But because of COVID he doesn’t think it’s the best idea. She may have weakness on one side and need to go to a rehab facility which again she would be at risk for covid there as well. So he is leaning toward cyber knife To the two largest lesions. He is also nervous though that the tumors may look bigger because of scar tissue and necrosis from the wbr. If it’s necrosis then doing the cyber knife will just spread the necrosis wider and cause more swelling. We are devastated. Does anyone have a similiar story where wbr didn’t work but cyber knife did? Also how was the recovery for those of you who had brain tumors surgically removed?
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Hi all.
I hope everyone is having a good healthy day!
I have used this website and specifically this thread for years as a support system. Although I have not posted, I can’t stress enough how much encouragement and hope everyone’s posts have brought me and my family and from the bottom of my heart, thank you.
My mother was diagnosed with stage 4 breast cancer in september 2014. She then had it metastasis to her brain in 2017. Since then she has had gamma knife (2017) and WBR (2018).
The past few months she has been having balance issues and now the past three weeks has a very very hard time walking and moving her legs (specifically her left leg).
Her recent scan used to treat her spinal compression (with radiation) showed a new spot in her brain and she is getting a pet scan to see if it is a new tumor or scarring from previous treatment.
If it is a new tumor they are thinking more gamma knife and if it is scarring then they are suggesting a procedure to help stop that.
Basically I am trying to find out if anyone has had an experience with balance / function issues and saw improvement after radiation?
She is very discouraged and my dad and I are running on empty trying to share the responsibility of being with her 24/7. So it would be helpful to get any insight.
Has anyone had an at home rehab person?
We are worried with the virus going around but are running out of ideas.
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I think the idea of more radiation would be a good one if her balance issues started with the met that she has growing. Depending on the location of the met, that can be the trigger of her symptoms. It would stand to reason that if the onset of latest met coincides with her developing issues, treating the met would help. I would also look into rehab as well as she may need help BUT, that may be something that may have to wait due to covid restrictions. I would recommend mobility aids like walker, cane etc to keep her safe, you tube has many videos on improving balance and coordination safely, have a look into those as well. She could possibly take care of some of it with help from whoever is at home with her. Best of luck with everything.
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I started my 1/3 radiation treatments yesterday. I know we all react differently but what I bad night/day I had. I spent all day in my dark room, sleeping on and off. I threw up. The vertigo and strong headache was enough to keep me off. My steroids got increased and now I feel better. I hope his will help with the last 2 treatments I have this week. On the other side, just found out I’m NED neck down! So that’s my good news of the day. Hope everyone is safe. Xx.
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Roro, I'm sorry to hear you threw up but glad they upped your steroids. Might be worth it to ask for an antinausea med to help you as well. Sometimes weaning off steroids can make the stomach feel wonky and consider digestive enzymes to help look after your tummy from the steroid usage. Can mitigate risks of digestive issues.
Glad to hear you are a fellow unicorn (Ned from neck down). It definitely helps make life easier if there is just one place that is acting up.
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thank you Mara. Part of me is just glad radiation to the brain is short as opposed to my initial one on the breast. Like only a week or two feeling this way. I have given myself some credit and accepted that surviving just one day at a time is important, even if that’s all we did for the day. Today despite everything I was able to cook for my family and get out of bed. I’m trying not to feel guilty for not exercising or eating chocolate pudding. And thank you! I was glad to hear those news too. Now to fight off this thing on the brain!! Xx
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I am sure it will get easier. Don't ever beat your self up for not exercise. Try to do things in mini form. If you can do a walk, go for 5 minutes at a time and take a minutes rest. Continue with the 5 mins as long as your able with the 1 min rest breaks. I do that on my treadmill, more so due to boredom but find this works and still really counts as a longer walk because your body does not return to resting. If you can't get out, walking back and forth across the room is very helpful.
What I say holds true, it will get easier before you know it. Don't let guilt in, it serves no purpose in your life. Be proud of what you accomplished, dinner for the family and even getting out of bed. Those are accomplishments.
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Roro, just got back from an hour long walk roundtrip,had to get some burgers. The trip there was fine, but the trip home was a slog. My brain kept saying I'm tired every step. I had to stop and reset the thought to I can bang this out and rest when I reached a street corner. Once I changed my thoughts, it was easier to get home. Glad I managed it.
Even after 5 years, walking can be difficult and I don't move super fast but I still try to get out most days. I hope this will be true for you too.
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Mara, thank you for your kind words. Some days are harder than others as you know. I’m glad you went for a walk and was able to complete it. You’re right, our mindset is everything. It’s hard not to feel guilty when there is so much info out there on what to do to keep “living” (exercise, diet, the mind & body connection) I’m 2 months out from finding out my brain Mets and some days are just a big.. WHAT?! Then I think about how we all have struggles in life, mine is just gonna last for a long time. That somehow makes me feel better. Are you currently in any treatment? I should start TDM1 next week. It’s been nothing but tests and surgeries in the past 6 weeks. Looking forward to slowing down a bit. I’m amazed by the human body and our ability to heal. That always keeps me going. Xx
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Roro, remember to take those "suggestions" for exercise, diet and mind connection and don't feel compelled to figure it out fast. Things that work will come to you and you will find out how best to apply these. There are so many articles on what we should be doing but first and foremost we have to figure out existing in our reality. It takes a long time to develop that. I have had 5 years to get used to it.
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Thank you Mara. 5 years gives me so much hope. It’s so hard to believe in time or anything long distance really, being so recently diagnosed. The first few weeks are so dark and you’re right, we must apply wha’s recommended out there to whatever fits our existence better. It all takes times.
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Roro,
Sorry it took me so long to reply to your text a couple of weeks ago. I haven't checked in here for awhile. Thank you for your kind words.
You can PM me if you like. This is a private message, kind of like an email within breastcancer.org.
Hugs, Susan
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I had whole brain in January and now have to go back for targeted on Thursday. Were you as tired with the targeted treatment as you were with the whole brain?
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Wanted to give a quick update. First off, I can't speak to surgery but I'm so glad to hear you are relatively well, Roro.
I finished WBR in January. Since then life has been about dexamethasone, which I can't totally go off because the extensive brain mets are not gone, though last MRI showed a bit of improvement!!! Lung and bone mets are stable, but now it's in my liver. A big WTF. But I am stubborn. Living a slower life with lots of naps but during quarantine that's somewhat normal!!
Sending you all Love and Light.
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Glad to hear from you Selkie. Glad to hear you are stubborn too, that helps a great deal and naps anytime are normal.
I have had both WBR and targeted therapy. With the targeted therapy, I was on a much lower dose of steroids meaning sleep was much more restful at night therefore, not as tired. I actually did not really notice any difference in activity level or effects from weaning off steroids on the last day of treatment since I only took 2mg of dex a day. I bounced right back.
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Robin - I just had targeted radiation (radiosurgery) to 2 spots on my brain and I had no side effects. The doctor said there isn't usually swelling when the spots are < 2cm, so I was not given any steroids.
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my MO just sent a prescription off to a specialty pharmacy for the new drug tucatinib. Waiting to see if insurance will pay gir it or if the drug company will give me access through compassionate care. Crossing my fingers. Maybe there was a reason I failed the other trial.
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Hooray, leftfootforward! Be sure to apply immediately to some of the foundations for people with MBC.
See link.
Love from PatGMc
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