Brain Mets Sisters
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susansf, I agree with Mara, the worst part of gamma knife is the numbing med injection and headcage, I found the pain/discomfort wasn't really noticeable after a 1/2 hour or so.
I had my post gamma MRI yesterday and the results are that the lesions are responding and are slightly decreased so far. I am also relieved to report that there are no new lesions.
Thinking about you Paula, hope your feeling better.
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Illimae, so glad to hear that the lesions are responding.
Momatt, as usual my thoughts are with you and Dani. I hope somewhere she can catch a respite from all of the treatment.
Josgirl, glad your test was clear.
For myself, I have an appointment for another MRI November 29th. Will meet my RO again to see if we will continue to watch the lesions or zap them. I am still asymptomatic and surprisingly still feeling calm about all of this. I would have been more bothered by mets showing up outside my old tumour site. The tumour that was there for WBR has responded so I expect that the new ones will do the same. I don't mind watching it though RO prefers to zap when smaller.
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Thank you e/o for your support.
Josie wow wow that's just terrific new for you. So happy you get to concentrate on the little onw, when is the next scan scheduled then? Which tx are you on now?illimae what a relief for you. Well going through Gamma is not easy. So glad you got good results.
Mara which tx are you on now? I could tell you that it's a breath of fresh air having RO wanting to radiate when these things are small, Dani was so neglected, because RO felt so bad for her i think, and she kept saying if it's not bothering her blah blah, even when she said it was bothering her, she would postpone it to the next scanning, i'm telling you i wish i cuda've had a video of the face of the current RO when she saw what's going on, she just could not sit still. Crazy crazy world.
SusanF what's the schedule for you? There was pain from the Y90 right after, it does last about 3 days, IR said it was from the radiation blasting the lesions, well let's hope that at least it did that.
Paula how are you feeling?
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Momatt, I am so sorry that Dani's RO waited so long to treat the brain. It's not like we can do much without one and knowing this caused her unnecessary suffering just makes my blood boil for you. I am glad you have a new one who is on the ball and hope they can stabilize her sooner versus later.
I am currently on Herceptin and Perjeta. These are targeted therapy to keep mets out of my body from the neck down. They are pretty easy to tolerate all things considered. I am also glad my RO would zap them when small. Don't really want brain swelling again. It was terrible. I am still asymptomatic. Have another MRI Nov 29 and meeting with RO Dec 7. We will discuss waiting or treatment if they have grown again.
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I am seeking advice before I see my MO in two weeks. I am being treated for breast mets to liver, T12 vertebrae and lung arterioles. It has been one year and all is stable..even heard that beautiful NEAD..for now.
I currently get restaged every 3 months with bone scan and chest/abdo/pelvis CT with contrast. Should I ask for a annual brain MRI or wait for symptoms? I did have baseline brain MRI at diagnosis one year ago and it was fine.
I would appreciate any advice.
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not feeling to good
Paula.
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Paula, are doc's addressing your dizziness at least and do you have a plan for continuing treatment? I may be confused but I thought you were done or nearly done with WBR, is that right?
Sandi, I don't think it's unreasonable to ask for an annual brain MRI, any more than that would likely be in response to symptoms but trust your gut
Mine were caught early due to an unrelated migraine but I was also higher risk being HER2+ with a positive supraclavicular node at dx.0 -
Sandi, in my case I was not given an MRI after my first one in 2015 when first dx. The only reason I found my met was because the brain swelling caused what I thought was vertigo and morning nausea that progressively got worse. By the time the ER gave me a CT, my tumour was 8cm by 6cm. Brain symptoms can be similar to regular head issues like headache etc. I think if you are concerned, you can ask for an MRI. My cancer centre did not do them unless we were symptomatic. I only get them now because I had treatment for the first tumour and I have a couple more lesions coming in the same area.
Paula, I am worried about you too. Please contact your MO about these symptoms or have someone do it for you. You should not be so dizzy all the time. They need to take care of that for you.
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Paula, I hope you can contact your MO and get some relief. I am thinking of you.
Sandi, a brain MRI was part of my initial work-up but I didn't get another one until my met caused me to have a seizure. My met was seen on that initial MRI but was misdiagnosed as a brain cavernoma by 2 different neurosurgeons. It wasn't until the seizure and the following craniotomy that it was discovered to be a breast cancer met and not a cavernoma. If you are concerned about your symptoms, I'd ask your MO for a brain MRI. If it shows anything, get to a neruo-oncologist ASAP.
Much love to everyone.
Carrie
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momallthetime I am on Ibrance and Femara with Lupron and Xgeva. I am not HER 2+. Like Mara my blood boils for you and Dani in terms of the doc experiences. Seriously Stage IV is nothing to tiptoe around.
Paula, hoping you can get some help soon!
Thinking of everyone.
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Thank you for the advice regarding when to have brain MRIs. You are all such beautiful people.
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IMHO Sandi even if you'd not be stage IV - there is nothing wrong in having an MRI for the brain once a yr, you have scans for the body once a year? But, if you are stage IV then more the reason to stay on top of things, MRI has no radiation, it's expensive yes, and many docs don't wanna answer to corporate why they are ordering these life saving scans, but from a Human point of view i think if you are anxious about it, they should do it.
I remember speaking to someone years ago, she was telling me how she made up symptoms to get scans, she said she had a feeling about something and so she played their game. Just saying
Thank you guys for understanding, well said stage IV is nothing to tip toe around. Time is on their side, you understand. Tomorrow is another day at the job, ppl come ppl go, they will take a deep breath for a moment, and move on.
Today she started 14 days for the other rads, from neck down... in a perfect world, when she's done with all that, she should be like new right?
Potassium is low now, no wonder she was not having food intake, raisins i checked could help, banana is too difficult for her to swallow yet.
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hi SusaninSF,
I remember seeing your older posts when I just started Joining BCO. You seem to have managed it very well. I'm sorry for the progression, and hope gamma knife resolve the problems!
Hi DizzyDee,
I totally feel your pain. I’m here because my dear cousins cancer recurred. Similar to your sister, she’s 34 this year. She also received WBR a few months ago and it helped to stabilize the mets. Her Symptoms slowly went away, she didn’t have too many side effects. Then she started Xeloda which seems to Shrink the small shadows in her brain too based on her latest MRI. Don’t pay attention to the doctors estimate. When she was first diagnosed 3 years ago, her doctor gave her 1 year. Now some doctors said at most 2 years. Whatever the doctors give is just statistics, and we believe that everyone is different on the statistic curve. Don’t give up, find a good doctor for her!
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Hello, Everyone!
Today is my first day checking in in a while. It's been quite a journey so far, and I'm so glad to see all of the active updates and grateful for the experiences that people share. It helps to know that there are just so many ways that this disease can go.
I've been trying to quietly recover from my surgery, which was mid-October. I had a craniectomy after mets were discovered in my cerebellum. The surgery went well, and the terrific surgeon was able to get the 4 lesions, with possible exception of the edge of one. I was in hospital recovering for a few days, then home for a week, then I had to be readmitted because there was too much pressure in my brain, so they brought me back in to have a lumbar drain installed. That was another few days in hospital where I was really out of it. Now I'm back home with my husband and two kids (11 and 8). I can't drive, and I'm weaning from steroids, so things are pretty quiet, sleep is disrupted, and my husband is picking up lots of slack with driving kids places, etc.I'm a bit tired and dizzy, in comparison to before. It is also a blessing to be off work, but it means that my life is totally disrupted.
This past week was full of follow-up appointments, including the fittings for the regional radiation treatment that is scheduled for early December. Next week we are going to Dana-Farber for a second opinion. I'm not expecting any big news, just want to hear what someone else would do in my situation. I have a bone biopsy scheduled for December, too, for my pelvis. Other than the pelvis spot, it looks like things are quiet from the neck down, as far as we can tell. So the question becomes whether to stay on the same systemic treatment or whether to move on from H&P to TDM1 or even something else.I've been on a break from any systemic treatment since the surgery, so my skin is actually recovering from the year-long assault that it was on. MY MO says that this "wash-out" is not ideal, but it could be a good way to get ready for something new to come in December.
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Lisa,
Oh my! What you have endured. I’m praying for speedy healing and strength and wise decisions from docs going forward.
Best wishes and gentle hugs!
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I am sorry to hear that you were dealing with brain pressure and about the drain. That really can set you back. Sounds like things are smoothing out now and as Kaption says, hopefully the second opinion will yield the answers you need. Good luck with everything.
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Thanks Kidmanliang!
This is me today waiting for my gamma knife
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Wishing you all the best susaninsf!
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Good luck! I asked my nurse to take a picture of me in the frame too. He thought I was a little crazy, lol.
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Susan, does it really hurt? I will be getting this sometime soon.
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Mara,
They sprayed the spots with topical anesthetic and then injected local anesthetic in each spot. The first injection wasn't enough on one side so I asked for more. No pain after that but it was uncomfortable. Kind of freaked me out that there was nothing on the top of my head. It's not like a helmet. The entire thing is supported by the four screws in my head and it's quite heavy. They offered me Ativan but I turned it down. Had a hi-def MRI first so that they could position the treatments and see if there was anything new or missed. Then they studied the scans and planned out the gamma knife procedure. There was some MD from Great Britain who was supposed to be the top Radiation Oncologist for gamma knife in the world visiting with my RO today. That gave me some additional comfort. I checked into the hospital at 7am and was out by 3pm. Most of it was waiting. The gamma knife procedure was only 12 minutes. The MRI with contrast took about 45 minutes.
They sent me a video link about the procedure: http://www.youtube.com/watch?v=B8SIOaJ7lWQ
I didn't watch it before going so I didn't realize they were going to put the head gear on from the start. Oh, and they also gave me some steroids in my IV before the Gamma Knife to combat inflammation but didn't give me any meds after the procedure.
Had to fast the night before but my husband brought me something to eat and drink when I got out of the MRI. Feeling ok now. Just a big fatigued and my head is still numb 15 hours later.
I have to say that it was much harder than my WBR treatments but at least it was just one day and so far, no side effects. My RO said I wouldn't lose any hair. Hope it will work!
Hugs, Susan
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Paula, Please let us know how you are doing.
Hugs, Susan
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Mara,
Take the Ativan. It made a world of difference for me. You got this!
Hang in there,
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Mara, I worked myself into a puddle over the creepiness of the frame and my fear of needles, I too took the Ativan. I personally found the injection painful but IV's are painful to me too and the pain/discomfort didn't last more than a 1/2 hour.
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Hi Everybody - It has been a really long time since I checked in last. I think over a year or so, but just wanted to let everybody know I am still here! As a quick catch up, I was diagnosed with triple positive MBC de novo in May 2014 (the week of my 33rd birthday). My original mets sites were lungs and sternum. Those resolved on my first line of treatment and thankfully have remained NED since. Then in August 2015, I was diagnosed with Stage 1 Triple Negative breast cancer in other side of the same cancer left breast. So, two separate primary breast cancers at the same time. Then in February 2016, they found 8 brain mets after some local seizures and one full body one. I had gamma knife, which caused some necrosis a few months later. I think that is around the last time I checked in.
So since then, I have been stable below the neck since May 2016 but my brain mets are stubborn. Turns out the gamma knife didn't take and they continued to progress. They then tried Tykerb, but still progression. Since being triple positive and triple negative excludes me from a lot of clinical trials, my team decided to add in the chemo Avastin to Xeloda and Herceptin (which is what has been keeping me stable). I have 8 stubborn brain mets that were progressing despite gamma knife and tykerb. My oncologist and neurologist decided to add in Avastin to my Xeloda and Herceptin.
I just had my first brain MRI after 3 infusions and we have stability and decreased swelling! I was hoping for mets shrinkage but I will take this. FINALLY something maybe working. The plan is to stay on the plan and I was cleared to go with my father, step-mother and step-siblings to Jamaica next month! Life with MBC really is a horrible guessing game with the worst stakes, your life. But right now, I am winning...
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Hello Ladies,
I began having dizziness about 6 weeks ago, which I at first attributed to motion sickness, then tamoxifen, then a head cold.....but it is not going away. I called MO this morning and have brain MRI scheduled for tomorrow morning. I am so scared, and I cannot talk to my DH about it. He just keeps on saying that everything will be fine....but sometimes, everything is not fine. Any advice you can offer on the MRI would be appreciated. I've never had one before, and this is all moving so fast.
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Becs, I was worried about you since you were not active in BCO for a while. Now I realized not being active might be good news sometimes. Hope the 3 drugs combo will be more effective over time
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Kris,
Sorry you are experiencing problems! The brain MRI is doable...someone called it a "jackhammer disco" combination as it is really noisy.
I nearly laughed the first time- thinking there is all this noise, but what does it really do? Sort of like old sci-fi TV sound effects.
Closing my eyes reduced claustrophobic feelings...and I used yoga breathing to keep my mind from worrying. (I will have to do it again in January.)
Plus...things other than brain mets could be causing problems.
Some here have had long lasting, effective treatments for brain mets.
Deep breaths!
Becs - good to see you
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Susan- glad you are done with the gamma knife experience. Hope you feel good in the days ahead and tha it worked well!!
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Kris,
I also have an MRI scheduled tomorrow morning. It’s not my first. I take a Valium or two. You’ll be given ear plugs and headphones. They’ll play music, but you won’t hear it mostly. The MRI is loud, lots of clangs and bangs. Someone called it a disco, but always keep my eyes closed the entire time- before I’m slid into the tube. Then I try hard to keep my mind busy playing words games, etc. The tech should check in with you occasionally, and you’ll be given a thing to hold to let him or her know if you need something.
I hope you get reassuring results. Let us know how it goes.
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