Brain Mets Sisters
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@puffin2014 I trust the treatment will work. You have had such beauty in your life, and you will always have the flowers and the birds. Thanks for sharing that.
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puffin, I'm so sorry. I wish I could give you a hug.
Carol
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Radiology was able to reschedule my radiation from Tuesday to Monday. And my caregiver was also able to switch to Monday. Tuesday I will have no therapies in preparation for a pet scan on Wednesday. So things are moving right along.
My HomeHealth supervisor was here this morning and has me using my albuterol inhaler regularly throughout the day which has helped my shortness of breath.
The occupational therapist came over the noon hour and brought putty for me to work and roll with my right hand. Then she buried 10 beads in the putty and I had to dig and retrieve them all out. So I will have that to work on this weekend.
Then this afternoon the physical therapist came and took me to our gym and had me work on the nu step machine to work arms and legs.
So now I am relaxed in the recliner watching TV until bedtime because I am exhausted
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@puffin2014 I hope the scan goes well next week and that the radiation helps and that the birds keep singing.
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My right hand and arm are worse today after radiation, basically useless. Legs are so weak I'm having trouble pushing off the toilet so our maintenance man is working on bars that actually attach to the toilet seat.
Doing my prep work for tomorrow's Pet scan - drinking my 64 oz of plain water and eating low carb supper.
A neighbor brought over her pill cutter and cut up my decadron pills for weaning the dose over the next 3 weeks. That should help my sleeping and swollen feet.
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@puffin2014 Sorry to hear about these physical difficulties and I hope you get some relief.
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puffin, why the low carb before your PET scan? Is that something I should be doing?
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My PET scan involves getting an injection of radioactive glucose, then I lay still for 50" while it distributes in my body. Then I go thru the scanner to see where the glucose concentrated. Since it's a measured amount of glucose I was to have no dietary sugar the night before or morning of the test
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Emac, I am sorry I missed the Apr 23 post. Yes, your cognition will come back, your brain is just inflamed and that can affect thought etc. I had problems with cognition for a few weeks post WBR but it came back for me, it should for you. Ask your doctor if you can record advice on your phone so you can hear it more than once, get the sticky notes app on your phone, you can use it for grocery list, appointments, can help remind you of things coming up. I went through this myself and it is frustrating but it takes weeks. Your brain will settle down. For a while notes, keep lists of what you need to do for the day and keep doing that as well. Good that you have another person. Record the questions you want to ask on the phone as well, super helpful, most docs should have no problem with that. Get post its for home as well. I am in your pocket, look forward to improvement, it should not last forever.
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I've always been a big list maker, and now that I can't write with my right hand I've been dictating my lists, etc into a notes section of my phone, then copying and pasting the note into an email that I send to myself so I can print it off my laptop.
I dictated a note for the nurse to give to the dr to read before he came in to see me titled "this is how I am worse since I was discharged from the hospital last week". They had wanted to wait a month to repeat the MRI and I knew I was getting worse every day. The plan changed quickly after he read my print out, and I had my tumor mapping MRI the next day and radiation 6 days later, and my PET scan in another 2 days, which showed no other tumors
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@puffin2014 It seems you have had good news? I keep notes between doctor's visits to make sure I touch base on everything.
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tougholdcrow: yes, I had good news with my Pet scan - no other tumors found! Also, today was the first day I started showing improvement since radiation. I can do a little more with my hand today
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@puffin2014 I am so glad to hear this. I hope there is steady improvement now.
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@puffin2014 thank you for the info on the glucose. I just had to fast, but no mention was made of the low carb. I'll ask before my next scan.
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I’m sorry to let those on this thread know that there was a post on the “In Memoriam” thread this morning letting us know that emac passed away June 4th. I’m heartbroken. She was a beautiful soul even into her last days. Such sad news. May she rest in peace.
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My oncologist increased my steroid back to 4mg 3 times a day and will
be requesting preauthorization for Avastin, an IV infusion that's given
every 2 weeks over 1-2 hours. It is not chemo, it is supposed to shrink
the blood supply to the tumor, which takes at least a month.Anyone here been on Avastin?
It's my last option, if this doesnt work she said I'd go on hospice
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Puffin, thinking of you and all the other wonderful women on this forum. I'm not familiar with your treatment plan, but praying (if you accept prayers) the treatment works.
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puffin, I'm so sorry. I wish I had the perfect response.
(((hugs)))
Carol
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Went for my brain MRI this morning and the MRI machine was broken. Grrrrr. Got myself all psyched up after not sleeping well last night. Rescheduled for Sunday.
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Irishlove: all prayers welcome
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aj, I've had that happen just once. It was a stat MRI and the machine was broken. Receptionist told me the next available appointment was in two months. Ummm, that's not how stat works. She didn't care. I called ancillary scheduling, and they got me in within a day or two, as I recall.
I hope you get the scan ASAP, just for your peace of mind. Not to mention the hassle of getting to and from the scan facility.
Carol
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@sunshine99 They got me in for tomorrow (Sunday!). I needed to have it done before my oncologist appointment on Wednesday.
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AJ, that's great! I'm glad they got you in, even if it is on a Sunday.
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The Dr has decided that my tumor is not from my breast cancer, it's an independent brain tumor. I start Avastin IV infusions Tuesday to shrink the blood supply to the tumor.
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puffin2014, I have been thinking about you on this very stressful journey and I wish you a good outcome.
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Hi everyone, I have a question that I’m hoping some of you might have some thoughts on. For those who achieve NED from the neck down, some patients have brain mets that continue to appear after others have been successfully treated with gamma knife, while others don’t get any additional brain mets. I read that the overall control of brain mets is often dependent on how well the cancer is controlled in the body. If more do develop, where would they come from if the patient is NED? Are there cancer cells just floating in and around the brain waiting to embed in the brain and grow? Why wouldn’t they grow at the same time as the others? How many times can a patient be treated with gamma knife? Do they ever stop appearing with just gamma knife treatment or does it also typically need a drug that crosses the BBB? I’ve asked these questions to my MO and the neuro radiologist, but didn’t really get definitive responses. Thank you.
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Harrow, I’ve been stable with a single bone met since my initial chemo in 2017. Unfortunately, my brain mets popped up (between 2 and 5 new spots) about every 6 months to 1 year. I had gamma knife 6 times over the years and 1 craniotomy while on Herceptin and Perjeta and also when I switched to the Herceptin/Xeloda/Tukysa combo, which failed to slow progression in my brain. I’m May 2023, I moved on to Enhertu and it is the only meditation to eliminate the Brain Mets I had and even old ones that shrunk but never fully disappeared after radiation. I’ve had nothing new since then , so NEAD almost 2 years. Because cancer cells are in our blood, they can travel anywhere at anytime, which is why preventing new tumors is so difficult, we’re just chasing the cancer and hoping it’s dormant for as long as possible.
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@illimae thank you. I always appreciate your thoughts and input. I continue to struggle with the uncertainty of everything and asking questions helps ease my mind a bit. That’s amazing that Enhertu is working so well for you! I wish you many more years of keeping things at bay.
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harrow, answering you questions :1. there are cancer cells in our bodies , that's why we diagnosed with stage 4 cancer and if we are NE(A)D (keep in mind that no scans can see small lesions everywhere -we can have a number of under 1 mm lesions that do not register anywhere for example) they are still there. 2. yes 3. because they do not want to ? Nobody knows and it does not matter why; what matters is that they do not. 4 varies depending on site , number of lesions, size of lesions , expertise of doctor etc. From 0 to 50 so average is not likely to be helpful to you. 5. sometimes they do , sometimes they do not. That is probably why you did not get more precise answers from your doctors - because knowing average does not help you or because nobody knows answers to those questions or because they are not applicable to your case …
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