Brain Mets Sisters
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my wife is under 12 sessions of WBR ,can she take Boswelia concurrently with WBR
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Check with the onc. I know people use it for brain swelling, decrease inflammation BUT I did not use it. Others here have. If you want info, search the forums for references to boswellia. Good luck.
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rgc 77 , I hope you are holding up ok with your cyber knife . Are they putting that halo on you all 3 times? That thing gives me nightmares and I'm so sorry you're going thru it. Keeping you in my prayers.
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Hey Ladies,
Just wanted to give you an update on my mom. Today we met with a neuro onc at Mass General in Boston. She was great....thank you Josee for recommending her! She really took the time to make sure she answered all of our questions. My mom had an MRI this morning before her appointment which is about 4 weeks from her last WBR treatment. The doctor was very happy with her response to the radiation and showed us the side by side scans so we could see the significant shrinkage in the tumors. She gave us options (trials, targeted therapy, immunotherapy) if there is progression or new growth down the road. We needed to hear that after her MO pretty much said there was nothing after WBR. I am so thankful we went. She will get another MRI in 2 months.
I hope you are all doing well.
Tracey
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Nan812, thanks for asking. Things are going very well. I've had two days, and tomorrow is the last. It's not a halo, just a mask that fits very close. I slept through half of the treatment on Wednesday. I'm not claustrophobic, so that probably helps. I am extremely calm in a situation like that and it all just goes by really easily.
The radiologist started weaning me off the Decadron to quickly, though. I had four seizures on my left side on Tuesday, each one progressively worse. He put me back on 12 mg per day and that seems to keep things in better order. I am definitely rather worn out, which coincides very badly with the need to get our shop emptied out by the 31st. My DH says I'm a hard taskmaster. He knows perfectly well I would have been in there hauling all the boxes with him if I could have. He doesn't usually whinge like that, but he doesn't like moving, especially when we haven't got any place to put the stuff at home!
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Tracey,
All I can say is yay! We need hope and I believe based on what you say about your mom not gettingoptions is almost malpractice. I am so glad she has you to push and that you did link up with a good doc! Yay!
Josee
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Tracey, am glad to hear more options being offered to your Mom, you need hope and it sounds like you were given some. That is so important.
rgc, glad tomorrow will be your last treatment. You will be tired for a while I imagine. Take it easy. If possible, can someone else help you clear out with your DH, either family, friends or a business like 1800-got-junk? That would allow you to rest up and your husband to get some help.
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Tracey thanks for the update, how nice you got the recommendation from Jocee. Something def off with the other doc. Gr8 news.
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rgc 77, I'm so glad that you're handling the cyber knife well...no one told me not to drive the next day (after my first) and I felt so well I drove myself to chemo and was going to meet DD for lunch..they made me call my husband to pick me up after I fell asleep in the chair (they say I passed out) lol whatever
The procedure I had is called a gamma knife and both times they screwed a halo into my skull ( I still have those scars/dents on my forehead ) I just couldn't imagine going thru that 3 times in a week, I'm so thankful they found a way around that for you. That whole thing worked great on my tumors tho( yours will too!! ). Can I ask you what your seizure felt like? What kinds of symptoms? This has nothing to do with seizures but after gamma I found myself craving very hi fat foods and giving in!! I felt better after a few 3min eggs, or a bowl of guacamole, even ice cream (I've eaten that every nite since DX lol) maybe because our brains are made of cholesterol and the extra helps with repair...no science but I felt better.Keep shining bright
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My daughter also told RO they better find a different way, there is no way she would do Cyber again. The screwing was very painful and it was a terrible experience. Yes,it helped. But she won't go that route again. And she never ever complains,she did not complain while she was having tx but won't do it again.
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hi M.A.T.T. , so sorry that your DD had to go thru that too and I was right there with her in never ever going thru that again!!! well..I had a lil one pop up last summer and my fear of an out of control brain tumor was worse than that medieval torture chamber. I had a long talk with the team down there and although they couldn't put me under...I think I was still high the next day from whatever they did give me..lol that made it so much easier. I pray she never needs it but please tell her that they have drugs they can give you but it seems you really have to demand they keep you comfortable or they don't offer. Like your daughter,I don't complain much either and have a very high pain tolerance...you know what they say about the squeaky wheel....we need to squeak more
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I was told to take an Ativan prior to arriving. They then gave me more before they did the screwing. That was my centers protocall. I was pretty mellow for the procedur
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Thanks for all the interest in my CyberKnife experience. It was fascinating to me. They obviously put a lot of thought into making the experience as calming and comfortable as possible. The room was very tastefully decorated, with a lovely fake window in the ceiling with a gorgeous cherry blossom scene. They provide lovely warm blankets, and the tech was top-notch. He is such a caring individual, and his manner is so calming. I was absolutely calm anyway because I'm just that way, but it was a very good experience. They let you bring your own CDs, or they will play the radio for you if you want.
The best part of it all was Thursday afternoon, about 26 hours after treating the most troublesome tumor. Some of the feeling in my left side returned. It isn't all back, but half of my gut woke up and came back to life after a six week snooze. Also, my headaches are mostly gone. It's nice to experience immediate effects.
Someone asked about my seizures. They only strike on the left side, starting in my left hip and pulsing there for 3 or 4 minutes. Then the pulse takes up in my neck and moves into my head. But the pulse in the neck, the one in the head, and the one in the hip are not in sync. It may involve me from the crown of my head to the sole of my foot. That just depends. A couple of times it has gotten so bad that other people could see it happening, because it would move my head from side to side rather violently. They last from 5 to 9 minutes. That long one was the worst ever.
Here is a picture of my mask. It's a nice, close fit, but really not bad.
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That mask looks just like mine did. Sounds like your treatments took longer than WBR did. My hat is off to you being in the mask so long. Glad symptoms are feeling better.
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DD had numbness in the left arm, really bothersome, MRI of the cervical showed all the usual suspects, hyperintense enhancing lesions, from C through the whole thoracic. But the main issue is the "large paracentral/foraminal disc protrusion severely narrowing the neural foramen. with rightward cord displacement. etc... So now doc recommends Neurosurgeon, maybe he will advise on Kyphoplasty. We have to set up appointment, of course we only found out AFTER we called to check what's up.
This is affecting T1/T2 anyone here ever had such issues? Thx.
Take care everyone.
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No experience here. If there is something being narrowed in her spine, kyphoplasty sounds like a doable option. May offer her some relief from the numbness. It can be an outpatient procedure as well. Below is what I found looking on google. (I know it can be bad, but useful too.)
Hope someone else pops in who has had experience.
Kyphoplasty is minimally invasive, percutanuous (requires no surgical incision), and can be performed under local or general anesthesia as an inpatient or even outpatient procedure. The duration of the procedure is usually between 30 to 45 minutes.
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Mara thanks so much. Yes, something, a lot of somethings are def narrowing her spine and infringing on the nerves, Unfortunately, she has extensive bone mets, her C spine is full of it and the whole spine. They won't radiate just as she has symptoms. She had to have emergency rads to the sacral, bcs of numbness to the leg and now it's the arm. Let's hope doc is not scared to mess things up there. Appointment tomorrow, so we'll see.
THX!!! Hope you are all coming along.
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Wisdo.com contacted me to do an interview about metastatic breast cancer and they made a bunch of short videos from the footage. If anyone is interested, they can be found here: https://wisdo.com/profile/susan-kobayashi. Hope you find them helpful!
Hugs, Susan
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I was just diagnosed with multiple brain mets on December 27, 2016. I just finished ten wbr treatments and I am to start xeloda soon. I have lung, liver, lymph nodes, abdominal lymph node, and brain mets. I am wondering if anyone has any positive stories. My oncologist seemed like the idea of being here next Christmas was not likely. I am surprisingly not scared to die. I am 41 and I have 21 year old son who plays college baseball in New Mexico. I would love to at least be able to see him graduate next Spring.
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hopeful- xeloda did wonders for me. I've been in it for 4 years mostly NED. Keep the hope. Xeloda got rid of a liver full of rumors and has kept any new brain mets from forming so far for me.i was told I had one year in 2012. I know I am very fortunate.
Best wishes.
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leftfootforward- that is great to hear. I pray I can get those same results. I needed a little positive news. So happy for you
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Hopeful,
The WBR got rid of my 12+ brain tumors two and a half years ago and there are many on this board that have seen the same kind of results. I had brain, eye, lung and bone mets and am still going strong. My kids are are about the same age as your son. I have a 22 year old daughter and an 18 year old son. I too hope to see my son, who's now a Freshman, graduate from college. I was on Xeloda for more than two years and it was a very easy-to-handle treatment for me.
You will find lots of information and support here. I also frequent the lung mets board.
Hugs, Susan
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One year ago today I first posted in this thread asking what, if any, symptoms the group experienced prior to their brain mets diagnosis and described a little about what I had been feeling. In my gut I knew it was brain mets, but I came here hoping for somebody to tell me that these were not typical symptoms and it sounded like something else. Instead, I got the literal life saving advice of call your doctor immediately because what you are describing doesn't sound normal. Thankfully I listened.
My doctor called me back around exactly this time, while I was at my aunt and uncle's apartment getting ready for an early, post-work dinner. I told her that I recently had been have balance issues, increasing headaches, vertigo, and back spams (which turned out to be seizures!!). She sent me to my cancer center's urgent care center immediately for a brain MRI. Thankfully my uncle came with me, and was by my side while a neurologist told me somewhere around midnight that there 8 malignant lesions spread across my brain, as well as significant swelling. In fact, there was so much swelling, I was told that if I waited a day or two to call, I could have had an stroke or hemorrhage causing irreversible damage. I am also thankful that my uncle (my mother's brother) was there to call my parents, who are divorced, to tell each one of them, so I didn't have to do it myself, especially since my mother and step-father were in the Bahamas on vacation at the time. My father and step-mother drove in to meet me immediately, while my mother and step-father hopped on the first flight home.
After spending the entire night in urgent care waiting for a bed, I was admitted to the neurology ICU ward for 2 nights to get prepared for gamma knife to all 7 lesions. I was 34 years old and did not know if I would make it to see 35. Well, here I am, exactly a year from the worst night of my life and doing well!! Since the radiation, all the lesions have remained stable to improved. My seizure issues remain, but are somewhat under control with medicine and healing time. I have my next brain MRI this coming Wednesday, so here is to hoping for even more improvement.
I wanted to share this as a thank you for all of those who encouraged me to follow my instincts and cal my doctor, and all who were recently diagnosed that there is hope, and a little time and healing can make a lot of difference.
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Good luck on your next scan Becs, I am hoping for stable or improved for you too.
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Oh Becs, my localized seizure sister! You were so brave the way you immediately faced your symptoms head-on (pun intended) instead of stewing in denial, which is SO easy to do when facing life-changing news. You certainly acted faster than I did. I'm keeping my fingers crossed for your upcoming mri
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Becs,
What an incredible story! Sometimes, what they see on the brain MRI is actually necrotic tissue. Your brain can't easily rid itself of necrotic tissue. Did your RO mention this to you?
Hugs, Susan
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Hopeful34,
Your story resonates rather strongly. I had the MRI that discovered my brain mets on December 27, 2016. I got the news as a Happy New Year's gift. I had already started Xeloda in mid-December because of lung, lymph node and bone mets, but that was promptly stopped. I underwent three days of CyberKnife radiation a week ago, which has definitely improved my life with a cessation of seizures on my left side and a reduction in headaches (none of which I had experienced before the MRI). I started back on Xeloda three days ago.
I'm 39 and have two sons who are 17 and 13. The first two weeks after the brain mets diagnosis were probably the hardest thing we've gone through as a family. We had just spent an unusual Christmas with my extended family (how could it be otherwise), but the shock was different, somehow. Cheerfulness just didn't spring naturally for a while, but it's come back. Laughter is a thing we cultivate at home because it keeps us all in a better frame of mind.
Fortunately, my onc does not want to give me any kind of time frame. She was brutally honest the day we discussed the return of my bc, but she is fighting for me with all she's got. I am not afraid to die, and when it is my time I will go. But until then, I've got a million things to do. I can't get them all done, so I've tried to prioritize and break things down to essentials, with a little fun thrown in. I've been a procrastinator all my life. There's nothing like this to bring life into focus.
Plan to go to your son's graduation, and get on over to the Xeloda thread. They have many words of wisdom and encouragement.
Sending you mental sunshine and hugs, Raewyn
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Hi. My MIL has stage 4 breast cancer with mets to the brain. Just looking for anyone who has tried xeloda and how successful was it? Thank you.
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SusaninSF has had whole brain radiation and took Xeloda for a couple of years. You can try messaging her.
There is a good Xeloda thread which can give you can idea of what it is like. Xeloda is thought to cross the barrier into the brain so it may do some good in there.
xeloda link below. You can peruse the SE etc that some people get and how they relieve them. Sorry you are here with us but I do want to welcome you.
When you get a chance, could you fill out your information ie type of BC, hormone status and Her2 status. Helps us to give our experience since it can be different based on these things.
https://community.breastcancer.org/forum/8/topics/772113?page=223#idx_6670
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Bec's- amazing story!
Susan- I liked your video clips very much, so inspiring.
Question, anyone with a brain tumor that took a year or so to start shrinking? Mines been stable for 9 months. They think it's some scar tissue that makes it look as though no shrinkage... no new inflammation or edema which is a good sign I guess.
As long as it's not growing right.. mine is inoperable and asymptotic but it's not welcome in my brain any longer :
Impatiently waiting for more shrinkage!
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