Brain Mets Sisters

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.

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

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.

Thank you Kaption. I appreciate your kind words.

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!

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

I take euromedica curcumin (on amazon) brand recommended by by naturopath 3 capulses a day 750mg.

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

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???

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???

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

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

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.

https://www.brainmetsbc.org

Huge hugs!

Linda (aka Chowdog)

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.

Tomorrow is my last Wbr.... After I will have a bone scan and CT to start Gemm and Carbo next Thursday.