Brain Mets Sisters
Comments
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If I were you, I would push for treatment by cyber knife or gamma knife without much delay. WBR could easily be avoided with a single met of this size. Questions would be more pertinent to the type of treatment you’ll have but once you know, feel free to update here, so we can share tips.
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I second gamma knife or cyber knife. Gamma knife is more flexible so if they find more spots on day of procedure gamma knife can do them. Cyber knife can only do up to like 5 spots. As you only have 1 both would work. Cyber knife uses s mask you wear, gamma knif is where they attach the metal frame.
I am glad you are speaking to them now because after a certain size these procedures can’t be done..
Good luck
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thanks for the reply, I just got the appointment with the Doctor for tomorrow, he is a scientific research in the hospital,
I was very sad yesterday is very difficult to try to don't think about it, or pretend nothing is happening in front of my family.
I have a new family now, my sisters in this blog, I consider you guys my new family the ones who understands me.
GOD BLESS YOU ALL!!!
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long story but I only start TX of the one lesion that was growing next week. There was edema around it and I’ve been on steroids. Dexamethasone 4MG 2x day very sensitive to stimulants even chocolate in afternoon cam keep me awake I’ve been getting hardly any sleep at all and I vane always needed 8-9 hours a night and never dealt with insomnia I feel and look like a zombie Do patients with treated brain Mets need to keep taking them? Earlier in the year when I got DX with the Mets I wasn’t even on them wondering will I get off them after radiation. Also some hand foot syndrome has prevented me from exercise so I am wound so tight . It’s 4:00 AM here and I’m beyond exhausted and wide awake
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When I had WBR, I only took steroids during the treatment cycle. My treatments went for 10 sessions, then I weaned off.
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I had WBR almost 2 yrs ago. I take a very low dose of Decadron each day to help with the pressure behind my eyes and inflammation.
I use CBD tincture to keep brain seizures at bay. Yes, I feel like a zombie, but at least I can still see somewhat and I'm not falling down.
L
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My MO said that, since I didn't have any seizure symptoms, I didn't need to take any steroids.
Never took any.
Hugs, Susan
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I was on a steroid briefly after my craniotomy. I haven't been on any in years. If your neuro onc is worried about seizures, you might suggest getting on anti-seizure drug like Keppra. I'm on an extemely low dose of it and have no side effects.
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Hi, everyone.
Tomorrow I am going for the first appoiment to prepare for gamma knife.
I really don't know what to except...
Thanks
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Topacio - I can't help with what to expect but sending you my best wishes
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Hi, everyone.
I have the appointment with the radiologis, he offer me two options gamma knife and surgery .
Of course I choose the gamma knife, I was surprise that he also offer me surgery?
Anyway I did the pre assessment appointment for the radiation therapy , I went to get done the mask....
Allot of women's have pave the way for many of us...so we have better treatments today. I honor there lives today!!
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Good news! I’ve found that generally gamma knife works pretty well, glad you have that option.
Got the 6 week post gamma (3rd one in almost 2 years) MRI results on Wednesday. Both lesions shrank, the largest from 4mm to 2.5mm and nothing new. Moving to 3 months scans instead of 2, all previously treated lesions are either totally gone or stable scar tissue.
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Great news illimae!
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yay Illina
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good news illimae...
💃🏾💃🏾💃🏾
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great news Illimae!
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Thanks everyone, I’ve been lucky so far that my brain mets have been few and responded well to rads. I wish all of us well 🙂
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For the past 2 days, I've been feeling like part of my left outer ear is numb. I was going to wait to see if it persists for a week or so but thought I'd check in here too to see if you have any thoughts.
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I have simply copied and pasted below to show some other possibilities as to why your ear may be numb. I am going to recommend you request an MRI from your MO to rule out brain mets. Although it may be innocent, given the fact you are dealing with Stage 4 already, it would be prudent to have it checked out anyway.
https://www.healthline.com/health/ear-numbness
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thank you Mara
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Kedp us posted jensgotthis.
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So I got some good news, CT scan shows me NED from the neck down and MRI showed that my brain mets that were treated last year are still shrinking. Luckily nothing else showing up in my brain.. Will have a bone scan to round out testing but don't imagine that will show much. Scans are being moved to 4 months apart instead of 3 which is nice. May I continue my good luck going forward. I could use more wins after the past almost year and a half dealing with my sick mother among other things. Finally starting to feel physically and emotionally better
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Wow mara51506, time for a happy dance.
My wife is TNBC with bone mets. She's on eribulin which has done wonders and was NED for 2 PET scans. She was given 3 months off with no chemo. Her MO said the cancer would come back as it hides deep in the bone. During her 3 months off the cancer went to her brain, the Dura. Because of that she was given just a few months to live. She's back on eribulin now (one cycle so far) and tomorrow is a PET scan. I hope she has the same results you've gotten.
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Yay Mara!
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Thank you illimae.
Mike I hope the same for your wife as well.
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So happy to hear the good news Illimae and Mara!!!
Hugs, Susan
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mike,
I have a question , can your wife have a Radiation in Her brain?
I don't know why they are giving that prognosis?
Praying everything goes well
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Topacio, She had Whole Brain Radiation (WBR). Her Dura, brain lining was cancerous and the brain surgeons at Oregon Health Science University (OHSU) as well as the chief Radiologist where she got her WBR all said her time is measured in months not years. They saw her MRI and reached that conclusion. We have not talked with her MO yet so maybe he will have a different opinion.
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Mike.
In British Columbia, There where some clinic al trial for oncogenomics.
Maybe if You can find some info about it it can help.
Keep in touch.
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I live in "The Other" Vancouver; Vancouver WA. I know, confusing. There is a move to change the city's name to Fort Vancouver because way back before Civil War times it was a US Army Fort.
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