Brain Mets Sisters
Comments
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Hey gals,
Does anyone have experience with edema/swelling on a lesion that was previously treated with gamma knife? The lesion I had treated just over a year ago has an area of edema and everyone seems a little puzzled. No one is worried, we are just going to watch it closely with scans.
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Nancy,
They saw something similar on two of the lesions that I had gamma rads on last year. They had swelling but also grew in size. I had a brain PET last week to check them out and one was radiation necrosis and the other one had metabolic activity so it is growing again.
Hopefully, your swelling is harmless.0 -
Miller1978: The first week of WBR for me was easy on my body. When I seemed to have the worst time was the 2 weeks after finishing treatment. Everybody is different. I've been going at this for 4 years now and have some side effects from all the chemo. How is your general health right now? I had to cancel my PT. So tired several dys I had to have my husband stay home from work and literally feed me in bed. Good luck.
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bondgirl. they did taper me off the dexatron. they did slowly reduce the dosage. love and prayers terry
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formygirls - thanks for the info on edema. Interesting about having a PET for the brain, no one has brought that up, so I may ask depending on how the next MRI looks.
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Ladies,
Thanks for all of your input and encouragement. The wedding is this Saturday and I am stressed and overwhelmed! So much to do, so puffy from steroids (haven't had a neck in about three months now), still not walking great, though it's SLOOOOWLY getting better, and I have mapping/ mask fitting for wbr on weds. This crazy ride makes me dizzy sometimes ;-)
I have to remind myself to pause and be present and thankful. Yes, I will be a fat, neck less bride BUT, the man who loves me sees none of that & I will be surrounded by family and friends who lift me up daily. I'm an extremely lucky girl all things considered.
As far as wbr, well it is what it is. I've probably waited longer than I should have (I'm 7 weeks post op) and hope that my tumor burden hasn't increased too much. After my last consult on Friday, I'm feeling a little better about it. It really is all about being comfortable with your doctors. I know going into this with fear will only make things worse and Im over analytical and paranoid to begin with. So bring it on! Thanks for listening to my rambling. Hope everyone is enjoying a peaceful & blessed morning. Love and prayers,
Nicole0 -
nnillar- Celebrate your wedding. You deserve it. You will be surrounded by people who love you no matter what and that is what this journey is all about. All eyes will be on you because you are the bride, not because of your physical symptoms. Take energy from all those around you who are celebrating you and your spouse to be. What a wonderful day.
I wish you the best with your WBT. It is not an easy road but one i know you can conquer. Hugs to you and yours. And I can't wait to hear about your celebration.
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Best wishes on your wedding, Nicole. Have a wonderful, joy filled day!
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What do you gals take for headaches? I've had a headache nearly non-stop for 2 weeks and now even percocet isn't helping. I would describe the pain as extreme pressure, worse when I bend over or even when I cough. Any advice? I started a low dose of dex a couple days ago, which I thought was helping, but the pain is worse than ever today.
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Nancy,
I have taken the following
Percoset
Dilaudid
Roxicet
Oxycodone
Hydrocodone acetaminophen
Steriods
Hope you feel better soon. I had a non stop headache for six weeks. It was horrible and one day it just stopped on its own.0 -
Could it be allergy related? I'd give Advil cold & sinus a try (daytime!) or excedrin. Nothing worse than a headache!!
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I also suffer from bad headaches. For the most part, we've never really been able to pinpoint a reason for them. Occasionally I think they come from being slightly deydrated, one time I was really low on platelets and recieved a transfusion, which helped immensly, but for the majority of 'normal headaches' , here is my routine..............
1 to 2 tablets of Dilaudid, A large glass of iced tea, and a warm rice bag plastered to my forehead, neck, eye, or wherever it feels like the pain is the worst. You may need a couple re-heatson the rice bag but it will help.
For a functional but not fancy rice bag, cut a pillow case in half, put about 5 cups of rice (anything but minute rice) inside, tie a big knot in the pillow case to keep rice in, and then heat for approximately 2 1/2 minutes, depending on the power of your microwave.
Crossing my fingers that this helps some of you.
Xoxo, Marcie
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Hi ladies. I was diagnosed with brain mets in April (while away from home on business...in the ER) and my life has been a whirlwind since then. I wound up at Johns Hopkins having one of the mets removed because of vascular involvement. I've also had two cyber knife treatments at Hopkins. I'm now back home in Maine tapering off of Decadron and waiting for an appointment at Dana Farber for a possible study.
Anyway...I just wanted to find a place with some ladies that know what things are like for me and I guess I found it. The past few days have been a bit anxiety ridden for me...how do you ladies cope with the uncertainty of this disease?
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Welcome, qtrmstrwife06, to the club nobody wants to join. I'm sure that others will be along shortly to welcome and encourage you.
I post very rarely, and I'm sporatic now in my visits here to read. But when I was first diagnosed with Stage 4 nearly four years ago (with mets to liver, lungs, and bones), I was an avid visitor to the Stage 4 section nearly every day, reading the stories and gathering encouragement and information. I was so grateful that I didn't have mets to the brain; I thought that surely would be the worst diagnosis I could receive.
There were a handful of ladies whose posts I especially enjoyed, because they were so filled with their personalities. Biting irreverent humor. Peaceful grace. Sweet compassion. Each individual so very different, yet so very filled with vibrant love of life. I was stunned when one by one they were diagnosed with brain mets, and cried out "Oh No!" as I read their posts. But you know what? They continued to share their journey, their shining personalities still shined through, and my fears melted as I realized that there is life after brain mets.
My brain mets was discovered in the ER in April last year, and bizarely my first thought when I heard the diagnoses was "I'm a Brain Mets Sister now. I'm in the club with the cool kids." Having read all the stories here on breastcancer.org enabled me to tell my 15-yr-old daughter in the ER "This is not the end. We still have lots of adventures and fun days ahead."
I had brain surgery and three cyber knife treatments last year, and had some challenges with reactions to medications. Last summer was hell. But I made it through that challenging time, and have been doing exceptionally well ever since. This website offered me hope last year in my most challenging time, and I hope you can find that same hope and encourage in this stage of your journey. You are not alone.
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Anyone else literally bouncing off the walls? I recall WBR sisters, one was Apple, talking about crazy bumps , falls, and collisions. No WBR to blame here. Definitely, an airhead fom jumping up too quick. If I went to the ER they would have to investigate physical abuse. Yeah, self-abuse. Its mostly comical, and amazing that nothing breaks...K-lo
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K-Lo, just quoting your "Decision Tree" to another metastatic friend this afternoon and thinking of you. You go, girl.
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Ha ha Kath,
Since Im in Rads again, they told me the questions really helped. Thye have electronic signin for tretaments (as opposed to MD visit). They then call your name with an actual PA system! Love it.
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I think I'm i the right place to post this question.
My mother recently started to feel dizzyness and vomiting to the point she is in bed for a week now. A week ago she was perfectly fine. Shes on Xeloda for gastric mets. I'm really scared that these symptoms could be a sign of brain mets. Please give me your opinion and I also need some encouragment words.
Thank you!
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Miacouto:
It could be side effects of the Xeloda or many other things but it definitely needs to be checked out. Her Dr. may want to schedule an MRI. Does she have weakness on one side or difficulty walking? I pray this will be not too serious but it definitely needs to be reported to her Dr.
Joy
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Thank you Joy,
She is in the hospital right now with her onc and will do a CT scan. It could be so many things, I know. She has general weakness but not in a particular side of her body. Just dizyness, vomiting and weakness. Hope its nothing serious.
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Hope you get some answers soon. Keep us posted.
Joy
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Hey gals,
I found out one of my brain mets, formerly treated with gamma knife has doubled in size the past month, so I'm scheduled for brain surgery next week. Met with the neurosurgeon this morning and she talked me through how it all works. Of course I couldn't think of any questions at the time, but now I have several, so am hoping someone else has experience to share.
She said they will need to cut the muscle that controls chewing and she'll sew it back and use some cement to keep it in place, to keep it from sagging and causing cosmetic issues. Has anyone had experience with this? She said I will have pain chewing on that side. How long does this last? Any tips to get through this?
She also mentioned I will have headaches...she didn't say these would just be post-op, I got the feeling these might go on and on. Any experience?
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Nancy,
I wish you all the best for surgery. I have the same problem with one of tumors that had been previously treated. My radiologist has recommended a three step approach. First, we will radiate that lesion again and I begin targeted radiation this week. If that fails, we will try avastin for a few cycles as it is known to help with radition necrosis and swelling. If that fails, I will need surgery. Of course the location of the tumor generally dictates the steps.
I really hope the chewing problems and the headaches are only post op issues and you come back to normal soon. I am sending you lots of hugs and support for the surgery. This road is full of bumps.0 -
Formygirls, thanks for the info. That is interesting about Avastin, I didn't know that. I've got an appt tomorrow with the Rad Onc, so I might ask him about it.
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Didn't know that surgery would ever be a consideration. I would have assumed more gamma knife or targeted radiation or wbr. Sounds like that might have been the cause of your horrible headaches, Nancy.
Totally unfamiliar...just sad, disappointed, and nervous for you.
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Hugs Nancy
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Thinking of you...always, Nancy!
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Thanks, gals. I spoke with the surgeon last night and the Rad Onc today and got more information, so am feeling a little better about this, though it is still pretty daunting, I'd love to hear from the gals who have had a craniotomy. All the doctors are on the same page that surgery is clearly the next step and it needs to happen sooner than later because how quickly it has grown in the past month.
I'm scheduled for a stealth MRI on Tues, surgery first thing Wed the 24th, which happens to be my birthday. Neurosurgeon says I'll get to eat cake in the ICU.
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Nancy, will be thinking of you.hope that you not only get cake in the icu but also that you can blow out the candles!!
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Nancy this journey we all have to endure makes me sick! Praying the surgery goes well and you have little pain.
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