Brain Mets Sisters
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Amie,
So happy to hear the treatments have been tolerable! I found the treatments to be easy, even relaxing. I was stressed out during the first one but I didn't mind the other 19. Had to have 20 low dose treatments because they were radiating my eye tumor at the same time. It was a month after treatment that I became very fatigued.
Hugs, Susan
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Amie, I agree with Susan, the treatments were pretty relaxing. My fatigue peaked for me between one to two months post treatment. Once my appetite and walking kicked in, recovery took very little time. Felt good as new. Only things I had to deal with were tinnitus here and there (mostly gone now) and some baldness on top of my head. Love to rock wigs though as they do make me look much younger and I am still a little vain. Love having different styles. I like bamboo hats when I need to stay cool but protect my head from the sun when walking. You've got this.
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I unfortunately will. Have to jump right back into chemo once I finish this so I'm sure fatigue will linger, but it is finally getting nicer so should be able to get out more... Hard to believe a week Go we had no clue what was about to hit us. Over all doing goon.. Minus the not sleeping due to steroids....
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Lita - the oncologist wants to do chemo. She is not ready to give up yet. My wife is still very week but able to sit up in a chair for a few hours. Also more awake. However still confused but able to eat. Les see how things go
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Keetmom, I’m very happy to read that you got your “let’s do this” spirit back.
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So, got the results from my last MRI and my lesions have grown again. I will undergo radiation on the tumour. Not WBR this time. I am fearful since I have a higher chance of necrosis which scares me. I have managed to move away from the ledge. Still feeling blessed that I have still not noticed SE but irritated that I need more radiation. Thinking about curcumin to reduce inflammation and hopefully avoid any swelling. Will have to step up workouts to manage stress. Can't stay in panic mode.
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So sorry to hear this, Mara. You have been doing so well. Prayers as you move forward. Rads, then more stability!
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Thank you Kaption. I appreciate your kind words.
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I'm thinking of you, Mara. Best of luck as you negotiate your next steps. Boswellia and curcumin can both be helpful at reducing swelling. I've taken both and still take boswellia, as it helps with the joint pain from the Arimidex.
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Mara, sorry to hear that you are facing treatment again for brain mets. Is it safe to assume that no SE’s means this growth is small and caught early?
Sending you good vibes but I know you’ve got this!
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illimae, yes the growths are about 1cm each, two in total. The plus side is that my brain is not swollen, they are not in a critical area either. They are also in the same area as my original tumour. I feel better that they did not show up in other parts of my brain. They dont use the halo but it will be targeting the tumours themselves. I hope to recover as well as you. Thank you for asking. Necrosis fears are what freak me out the most since I am at higher risk.
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Mara thinking of you. I take curcumin and it’s a potent cancer fighter! I love that your answer is exercise the panic away. That is so smart and I hope to do the same. Hoping for a quick resolution to these mets and back to stable. What are your docs saying about the necrosis
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Josgirl....out of curiosity, how do you take curcumin
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I take euromedica curcumin (on amazon) brand recommended by by naturopath 3 capulses a day 750mg.
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Josgirl, RO was just letting me know that since my brain was radiated before, I am at higher risk for necrosis. I get worried about necrosis due to my poor tolerance of steroids, dark thoughts, depression etc. I am paranoid I would lose qol if treating symptoms of necrosis.
I dont have necrosis, just fearful of it is all. Getting better as the days go on at not hitting panic mode. Exercise has been helpful with this.
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Mara,
So sorry to hear this but happy for you that the new tumors are not in new places and that those places are not critical areas. I also had two new tumors where the old tumors were. 3mm and 1mm. Showed up last November, three and half years after WBR. They zapped them with Gamma Knife. The smaller one disappeared and the larger one was stable on my last scan. Hopefully, the larger one will be gone on my next scan. Having that metal cage screwed into my head all day was pretty horrible and I still have two tiny scars on my forehead from the screws. But, no side effects at all after treatment. The treatment itself was only about 15 minutes.
Have they told you when you will have the treatment? Think of you and wishing you the best!
Hugs, Susan
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Susan, thanks for your reply. I will have similar treatment as you except no halo. My RO expects I will have another mri to map out treatment. Should be in next couple of weeks.We want to treat soon as my brain is not swelling at this point. Keeping active to mitigate any SE and relieve stress. I am still pretty lucky that I am asymptomatic and NED from the neck down thanks to my Herceptin/Perjeta.
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So last week of whole brain, then what just back to chemo and living? Seem to be doing OK.... How do you live like this???
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I just keep on keepin’ on, you’ll find a routine that works
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So last week of whole brain, then what just back to chemo and living? Seem to be doing OK.... How do you live like this???
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keet, they usually wait one week between rads and chemo, and yes, that's what they did for me...rads to the brain then back to systemic chemo to take care of bone, muscle and organ mets that have progressed.
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Thanks Mara and Lita. Mara, sorry to hear about your lastest results. I wish you the best with your treatment.
Being that I do the research for my mom, I always make sure I ask her how she feels about anything before I go ahead with it. She doesn't know the first thing about computers. Lol
We ended up going to Dana Farber on Friday and the doctor seemed great. Talked about options and first step is to get another scan from neck down to see where that stands. We will do that on Thursday. Her last one was in Nov. and it showed her liver lesions shrinking, but she has been off chemo since Dec. 14 because of the seizures and the new findings in the brain. Her next appointment at Dana Farber is March 30 to talk about treatment. The no chemo part is nerve wracking because it's been so long. Hoping to find something that will keep both in check.
Tracey
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Anyone ever feel like there's a twinge or itch in their brain? I've felt it several times since Gamma rads and have had two good MRI's (Dec & Jan, shrinking & disappearing spots) but these occasional odd feelings still happen.
So, paranoia or what?
(Next MRI is on the 27th)
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I’m new to the group. I’ve been on these boards since 2014 but now I get to join the brain mets group. I’ll go back and read everything from the beginning another day since I’m so overwhelmed.
I just found out I have 4 lesions, don’t know the size or location. My oncologist called me as soon the radiologist called her.
I have an appointment with the ro tomorrow so hopefully I’ll get all the info then. My onco did say that I wouldn’t be doing wbr but srs, I think that’s she said. She said it was really targeted radiation. I googled a little bit but I’m still in shock and know pretty much nothing about radiation.
I was originally diagnosed 2014, went thru chemo and bmx and was told all clear, no Cancer. 18 months later, mets to both lungs, both kidneys, one adrenal gland, liver and a few bones. I’m her2+, er/pr -. I just finished a year of weekly taxol (50!) a month ago and now this! It’s crazy. Several of my tumors are gone and I’m stable except for this. 😜
What can I expect from srs? Will I lose my hair yet again? I’m slready extremely fatigued from the chemo
Thanks for listening
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I’m also looking for the brain mets radiation page but can’t find it! Help
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Hi Pinkninja,
Sorry that you are joining us. I am also a new member as well (dx with brain mets last month) and am scheduled to start SRS next week. My RO told me I may lose some hair (not all hair) but i think it depends on the size of lesion and location? I still have long hair and will decide what to do with when/and where my hair begins to fall.
I have found the following site (recommended by fellow brain mets sisters) extremely helpful.
Huge hugs!
Linda (aka Chowdog)
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Illimae, you are not imagining things. The brain reacts to radiation for many months afterword whether it be WBR or localized treatment. I would notice odd sensations myself for about a year post WBR. I imagine the same thing will happen when I have my SRS.
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Thanks Mara, I’m trying to be rational in that it’s unlikely to be widespread brain mets progression given I had only one shrinking remnant left on my January MRI but you never know.
Welcome pinkninja! I’ve never seen a brain mets specific radiation thread, sorry.
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Pinkninja, I'm sorry you find yourself here but know that you will find lots of great support and resources. When I had Gammaknife done in 2015, I did not lose my hair nor really suffer any lasting SEs. I was a little tired the day of the radiation and for a day or two after. Much love to you as you navigate this new diagnosis.
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Tomorrow is my last Wbr.... After I will have a bone scan and CT to start Gemm and Carbo next Thursday.0
