Brain Mets Sisters
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yeah better can't walk ad
Paula.
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Surprise! I had the gamma knife procedure today at Mayo, the day after my consultation with the neurosurgeon. I arrived at the hospital at 5:30am. They gave me Ativan and screwed the frame to my head. They identified the four locations for the screws, numbed them with a special sauce including novocain and the screwed the frame to my head. Then I had a CT and an MRI with the frame on my head so they could orient the tumor relative to the frame. Then I waited in a pretty comfortable sedated state while the other 3 people had their procedure completed. By the time it was my turn, the Ativan had worn off, I was ready to go for a jog, not lie with my head in a frame bolted to a table for 66 minutes (the length of time required for my particular procedure). I asked for and received another Ativan and proceeded to become very tired and relaxed. I lay down in the machine, they bolted my head to the table and I drifted in and out through the following 66 minutes.
The Cyber Knife industry would have you believe cyberknife is better/easier but Mayo does not do cyberknife. First because Gamma knife is still the gold standard for accurate treatment of lesions under 3cm and most lesions are under 3cm. Second, cyberknife is harder for the patient despite the marketing claims.
I did not like having the Gamma knife frame bolted to my head, but that was about 2 minutes of minor discomfort. Less than a typical dental procedure.With the frame everything but my skull is free to move... my jaw, neck, shoulders. Swallowing, post nasal drip is a non-issue. Compared to the mask, the frame is MUCH easier. Gamma knife is a single day procedure where the modeling and the procedure are all completed in less than a day. I was in by 5:30 and out by noon and I was last patient they worked on. Cyberknife is a procedure performed over several days and you are in the mask for 15-25 minutes each day. The mask is much harder to tolerate than the frame. The frame looks horrible but having effectively done both i would choose Gamma knife any day of the week ...
We'll find out what happened in 3 months when they scan again.
Z
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Z So now I'm stalking you on this thread. I got really freaked out reading about them screwing the frame to your head. Ouch! After I read the rest of your post, it makes sense. Done once and it's over. Yay!!!
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Z, I’ve had Gamma twice now and agree that it’s pretty tolerable, the numbing injection was the scariest for me, I HATE needles!
Thought this image might be appropriate, lol
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lol, Mae, I love the meme!!! I don't have a choice for gamma knifr, all they have in wichit a is cyber knife. I meet with the radiologist tomorrow.
Sure hope yours destroys that spot, Z!!
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Thanks all. One other thing ... they casually approached my IV bag with dexamethasone after the whole thing was over ... to prevent swelling and inflammation. I politely declined, the nurse politely encouraged me to take it, noting that all patients are given dexamethasone after gamma knife treatment, I politely declined. She went to ask the doctor if I had to take it, he said no I did not and out I went without the dreaded steroid. We'll see if I made the right decision.
Dexamethasone, although widely used, raises glucose levels This decreases sensitivity to chemo and radiation and increases side effects. I am surprised how much it is used, but doctors never ever challenge me when I decline it. They know the issues ...
Here's my answer to your picture Illimae. Gamma knife apparatus looks intimidating but its fast and easier than cyber knife in my opinion... I am a wimp when it comes to medical procedures.
>Z<
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All done Z! Hope you can rest well tonight and feel better tomorrow. You could be in one of the superhero movies as the sage leader for the resistance. Nice meme Illimae
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Good luck Gracie!
Waiving hi! Z
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Wow. Those frames make everyone look fantastic!
>Z<
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I am going to have whole brain radiation this week. 10 treatments. 1 med/small lesion and about. 20 small lesions. Not feeling very optimistic about future. Is 3-6 months it for me?
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Good morning ladies, just woke up and see your pretty framed faces and am just happy too see y‘all smiling. Thinking of you!
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livin- I just had 30 small lesions zapped in my brain Amat 2nd. That’s right 30. I’d like to think they are dead. I believe your treatment will do the same for you even when it’s hard for you to. It’s scary and sucks but people do well after these types of treatments. Try to keep the faith. It is hard and that’s why we are all here for you.
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Good to hear you are all done Z! I declined Dex after my Gamma too. My neuro onc was okay with it and encouraged me to continue with my Boswellia (as it helps swelling/inflammation too). I've taken Boswellia for 3 years now and find it really helps with the side effects of the AI's as well. Best of luck for continued healing!
Hang in there livin. There's no expiration date for any of us. There's several of us who have been around with brain mets for much longer than 3-6 months.
I love all the Gamma frame pics! I will have to look for mine. My best friend goes with me to every appointment and when I had Gamma, I asked her to snap a pic of me in the frame. She thought I was crazy, lol. My nurse said it's actually pretty common. I think it's on my old phone. I'll have to see if I can find it.
Hope everyone is doing as well as they can and enjoying the summer!
Carrie0 -
Wow Z, illimae, and leftfootforward! Thanks for educating us while going through that.
Glad this is behind you, Z.
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living, online stats are generally old and treatment of brain mets seems to be moving along at a good pace. Considering some of the treatment methods, clinical trials and overall health of patients, I think we’re nearing some really big advances in care 😀
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Living, I agree with illimae. The online studies are not current. Things have improved. WBR and brain mets can certainly be really scary when you start. I was told to start making final arrangements due to my aggressive cancer and size of the met.
They were wrong. It has been almost two years since I completed WBR. Was a long recovery, have not noticed any cognitive issues. I did have some recurrence where the original tumour was and had SRS to the surgical bed. No SE from the new growth or radiation treatment over easter.
Don't let anyone tell you how long you have. Don't give yourself an expiry date either. Exercise if able, keep eating and recovery will come easier. Good luck, PM me if you have any other questions pertaining to WBR. A few of us have had it and done well.
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Found out today whole brain radiation denied by insurance. I have had three sets of fasoldex now will get once a month. Will wait to hear from oncologist if he suggests anything else. Are there any chemo drugs out there that may get thru blood brain barrier,? Anything else?
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Hi Living, I've had brain mets since 09/2016 and stereostatic radiation twice since then. I had possible lepto enhancement in Dec.2017 with several brain lesions and the chemo combo gemzar/Carbo is reaching the brain barrier. It got me to NED from the neck down in April 2018 and I've had two brain mets since Jan. The brain mets continue to shrink.
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Living, can someone (RO or MO) intervene with the insurance co. on your behalf w/respect to WBR? It really works for most people, but it's not cheap.
I had 10 sessions for my 20+ tumors in Sept 2017, 9 mos ago. I'm doing okay, but I still have some dizziness, and the odd headache, but my vision has improved, and the ear whooshing isn't as bad anymore either.
My MO told me that if I didn't have radiation, I'd only have about 3-6 mos. Now, I could last for quite a long time.
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living- I had to go through two failed appeals for my gamma knife treatment in Zmay. We finally had an external appeal done, went back to a Neurosurgeon and finally got approval.
Ask you MO or RO to file an appeal for you. Also ask them if you could see a Neuro surgeon. Those guys opinions carry a lot of weight ( if they say WBR is what should happen, insurance companies tend to listen).
Don’t give up, the insurance company is planning on that. Keep fighting.,
As far as BBB and chemo, there are a few that can cross it. So don’t give up hope. I’m convinced Zelida held my brain mets at bay. There are others as well.
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capecitabine and gemcitabine both supposedly cross the bbb.
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Living - Appeal. WBC and SBRT are NOT experimental treatments. They are proven for long term survival and high QOL. There are chemos that cross the BBB but they are best implemented with radiation. It is so hard to fight for yourself when you get all these indications you are in a bad position ... we all know this. We are all telling you to push on the insurance because we've been there and it's worth fighting.
All - Today is two days after Gamma Knife treatment. I had a shaky, nausea moment this morning but since then I feel really good. I can feel pressure on my skull ... an inflamed brain? I declined dexamethadeath. Probably exacerbating/causing the pressure. The pressure is not painful but definitely there. It is keeping me off my bike even for a flat ride or from doing anything mildly strenuous. Sticking to a very very strict anti-inflammatory diet and easy walks.
I also have some inflammation around the eyes. I haven't been lying around with ice on the screw locations on my forehead as much as advised. But I am sitting around the condo while everyone else bikes. Gentle walk planned for later.
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Hi, ladies. I'm joining your thread after 11 years on bc.org and three bc diagnoses (two primaries and a local recurrence).
I was just diagnosed with a solitary brain lesion yesterday (which also happened to be my 50th bday. Go me). No evidence of mets below the neck, but I have lobular, which is notoriously hard to image, so who knows.
I was on neoadjuvant chemo for my latest primary when the lesion was found. Plan is to cyber knife the sucker, then start Faslodex/Ibrance. Onc had agreed to order Foundation One testing before we even knew about the lesion, which I'm excited about b/c I suspect I may have a somatic HER2 mutation that is driving this latest tumor, despite no evidence of gene amplification via IHC and FISH.
I am looking forward to reading through the posts on this thread and getting to know all of you. xo
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Welcome Nash! And....
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welcome nash. getting good diagnostics is the first step towards a long road with good QOL, keep us posted.
>Z<
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Welcome Nash, lots of help here and we all understand the brain takes it to a whole new level.
I have resigned myself to the fact I will not be coming off the Dex, and I now dont think I want to, I think the seizure was because of swelling from being off the dex. and I would rather deal with the side effects of steroids then seizing.
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Has anyone had any success with Kadcyla for brain mets? Met with doc today. 9 tumors are growing; largest is almost 3 cm. He didn't think radiosurgery was a good option, in part because of where one of the tumors is located. Had WBRT in December....
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Glad to hear your rads went smoothly Z.
Nash, sorry you find yourself here but we are all happy to have you join us. This is a great group for sure.
Living, I agree with the others, keep pushing back on the insurance. I think it is terrible that they would not cover radiation to address you brain mets. It definitely kept me going for a long time before slight progression.
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DizzyDee- unfortunately for me, my brain mets flourished when I was on Kadcyla. I hear however that lots of people do well with it. I am usually the one exception to the rules so it’s totally with a sho
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