Brain Mets Sisters
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I would have absent seizures just before the extra mets showed up this year. They were treated and have had no issues since. It is not uncommon to have focal seizures and they should be checked out. I am assuming you have already contact your MO, they should rush an MRI to see what is causing them. Swelling in the brain can cause this. They can do further radiation if need be to any spots that may show up. If your brain is swollen, steroids may be prescribed as well. Sorry to hear about this Wanda. Keep us posted.
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Hi ladies,
I'm new to brain Mets. First diagnosed Apr, 2017 Mets to bones, liver, and thyroid. All stable to decreasing Er/pr neg HER2 positive. Last week had an MRI due to intermittent pressure in the top of my head and a whooshing sound in my ears. Not constant and not terrible. The MRI revealed a large tumor above the 3rd vertical creating spinal fluid to build up, several smaller tumors in the frontal lobes and a cluster in the cerebellum. The day after the MRI they did a endoscopic procedure to creates a new pathway for the fluid to drain, no shunt needed. Two days later gamaknife to the blockage causing tumor and the others in the front. The plan was to do whole brain to the cluster in the cellebellum and gamaknife to frontal lobes for any new tumors that may appear. Met with radiation oncologist this morning. She is not excited about only doing wholebrain to cerebellum, saying not standard of care and could eliminate whole brain as an option if needed later, some thing about how the beams would line up- if I Remember correctly. On information over load.
For those that have whole brain radiation, if you are willing to share, how concerning is short term memory loss if you experienced it after WBR?
Thanks in advance for your thoughts.
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I had the WBR almost two years ago now. I have also had additional brain radiation this past year.
Like most normal people, my memory is as good as I would expect when I wake up and had decent sleep and exercised. I presently have no concerns about memory. I just have a habit of forgetting where I put something IF I do not keep it in the same place. I had similar symptoms before the brain met. I believe all the chemo, forced menopause and middle age have affected my brain as much or more than WBR and I was NOT prescribed the Alzheimer's drug.
In summary, I do not believe the WBR has impacted me greatly at all.
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Mara51506
I so appreciate your response! You make good points in that treatment in general can have an affect on short term memory.
Planning and simulation tomorrow.
Take care,
FamilyGal
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FamilyGal,
I had WBR and do have some short-term memory issues. As Mara said, difficult to figure out how much of the loss is due to age, retirement, chemo and other medications. Thank goodness for smart phones! I just make sure to add all appointments to my calendar and take notes on my notepad. No problems with long-term memory, creativity, or abstract thinking. For better or worse, my personality is unchanged.
Hope all goes well for you tomorrow. My technician told me to just imagine that I'm in a spa doing a facial treatment while they made the mask. That worked! I was so relaxed. :-)
Hugs, Susan
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Hi Susan,
Thank you for sharing! I'm encouraged by your experience and Mara51506. Great tip on imagining a facial 😊. Focusing on keeping it all in perspective.
Take care, FamilyGal
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Family gal, I'm in the same boat as Susan. I took Namenda/Memantine for 6 mos after WBR, and it did help w/cognitive deficiency issues, but now I'm starting to forget names, and when a thought comes into my head, if I don't address it immediately, WHOOP, it's gone. But I don't make a big deal out of it. I just roll w/it.
Best of luck w/Tx, L
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Lita57,
Thanks for sharing your experience! You bring up another good point, attitude. I will be moving forward with WBR, starting next week.
Take care,
FamilyGa
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Hello sisters! I finished my first week of WBR, and doing OK so far. I had a terrible headache after the first treatment, but not after the others. I do feel a bit wonky... like I'm just a little more off-balance than usual. (I was already a little off-balance, due to the met on my cerebellum!) My mouth is really dry. And my scalp is really sensitive. But I'm hanging in there! The RO said I should start to notice improvements in the symptoms I was having from my mets (dizziness, hearing loss, ringing, ear pressure) after about the 7th dose.... so looking forward to next week!
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Glad to hear the WBR is tolerable so far and I hope it works well with minimal SE’s.
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Sounds like things are going well. A weekend off will also help your strength for the second week.
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My MO is NOT happy that my headaches and eye issues are back again and that my hands are locking up on me for no reason - - - - could it be MORE brain mets? Or maybe they're growing back?
Well, time for another MRI. It's scheduled for 2 wks from today.
L
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I’m sorry Lita. Did your last MRI show the lesions as stable, shrinking or a mix of both?
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I am sorry to hear about your symptoms returning. Sending thoughts your way until you get the MRI results.
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Last scan showed some were indeed growing 😔
L
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Lita, I'm sorry to hear this
I'm having an MRI soon myself to figure out why I can't hear. My right ear is completely deaf and my left is like it has a cotton ball in it. 0 -
Well crap, Lita. I know you’ve had WBR, perhaps these can be treated with Gamma or Cyberknife?
Sending good vibes for your next appointment 🙂
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Hello Ladies,
I was originally diagnosed with Stage IV (HER-2+++) in November 2016. Multiple lesions to the liver at that time. I had 7 rounds of chemo and have been on Herceptin/Perjeta every 3 weeks since then and thankfully NED! However, my routine PET scan at the end of July showed some activity on my brain which led to us finding a 2x4cm tumor on my left cerebellum. I had a Craniotomy to successfully remove the tumor on August 9.I am preparing for 3-5 SRS radiation treatments to the resection bed. Does anyone have experience with this? What was is like for you? Any noticeable side effects and was it successful?
Thanks in advance for any responses!
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Hi lindsay,
I'm sorry you find yourself here, but I hope you will be comforted by all of the knowledge in this group.
I had a craniotomy my temporal lobe in February 2015 and a single Gammaknife treatment to the tumor bed in March 2015. I had no side effects from the gammaknife radiation and my brain has remained NED since then. Best of luck to you!
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Thank you for the response Goodie16! I am glad you've had such success and hope I can follow. : ) I don't like how we are all connected here, but am thankful to have this community for knowledge and support!!!
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Lita,
So sorry! Hoping for the best possible MRI results!
Hugs and positive thoughts, Family Gal
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Big Peaches,
Hope your MRI is good! Sending positive thoughts your way.
Take care, FamilyGal
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Hi Ladies,
I have another question. I’m trying to wean off of the dexmethozone steroids after my craniotomy. I feel like the meds have caused some vision changes and I am unable to focus. I noticed this as soon as I started taking them, even before surgery. Has anyone else experienced this? I’m just hoping I can get back to feeling normal once everything isout of my system.
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Hi Lindsay_a07
I'm two months out from a crainiotmy and have some vision issues. Kind of like a reflection in the corner of my left eye. I think mine are a result of the surgery though. My oncologist said it might go away on its own or my brain may just adapt. I do notice it less and less as time passes.
Ally
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I HAVE to keep taking a small daily dose of dexamethasone to keep my eye/vision issues at bay...as well as the dizziness and headaches.
It's interesting how some people have to try to get off of it as soon as possible and others have to stay on it long-term. We're all different.
L
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I agree Lita
They couldn't get me off the dex fast enough after my crainiotomy, only to put me back on it again as a pre-med to chemo 4 weeks later.Does any one else get ringing in their ears from Dex? I had the most awful ringing in my ears when they put me on Dex to reduce the swelling from my brain tumor and at the time I just assumed it was caused by the tumor and swelling as it went away after surgery. Now the night after every chemo the ringing is back. Wondering if it could be linked to the dex or the insomnia that the dex causes. Going to bring it up at chemo tomorrow.
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I had ringing post surgery and after radiation. It will subside over time. If it happens now, I take a few deep breaths and it will go away.
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Hi all, I am taking Dex now. 4 times today, so not sleepy. I have a Brain Shaped Beam Radiosurgery on 9/13/18 at 3pm CST. I do think it is helping the headache. My brain met grew, about a millimeter in the weeks since my Mod Right Mastectomy, w 4 lymph nodes removed on 8/13/18. I am healing up from surgery well... Just very low brain power and low stamina. I will go off the Dex 9/17/18.
They want me to radiate the chest wall. My breast tissue came back with NO Cancer cells left! only 2 of 4 of my Lymph nodes had any cancer left! What are your experiences with radiation to the chest wall/underarm?
I am thinking no. fairly strongly. My thinking =
1. since it has already jumped to my liver, rib, brain, possibly lung I don't see the point of trying to "Clean up rogue cells" this soon right there while it is healing-he said 2 months is all they allow.
and
2. since so little cancer was found in the cells that were taken and it has already jumped it seems pointless.
would love to hear your thoughts if you have been living with this longer....
thanks so much!
Angi
Finances are my biggest outside stressor as I cannot work right now and don't know how I am going to pay my bills in october/november.
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Starting whole brain and spine rads tonight. Very nervous but hoping it helps stop this demon in my body!
Bab
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Will be saying prayers, Babs, that it knocks those spots out, and sparing the rest of you! How many rounds do you have to have?
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