Brain Mets Sisters
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Yay Keetmom, happy to hear you’re moving right along and hopeful that the new treatments are both tolerable and effective 🙂
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Congrats Keetmom!!! Keep in mind that you may not see much change on your first MRI. It can take 6 months or longer to see the tumors disappear.
Hugs, Susan
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We are not looking at brain for 3, just wanting to get through other scabs and just mve on. Feeling pretty good not sleeping decent with the dex but it is helping my symptoms so afraid to stop itstop it
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joining again as yesterday I was told I had 17 lesions on my last scan.
Kadcyla is workibgbon mynliver tumirs but obviously doesn’t pass BBB.
Looking into iptions now. Hoping for SRS to some lesions then s break and then more SRS.
Trying to catch up on all the posts as it’s been 3 and 5 years since my last brain treatments.
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Oh no, Leftfoot. I'm so sorry to hear about progression.
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LFF, I too am sorry to hear of your progression. I hope treatment will go as you are hoping.
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leftfootforward, sorry to hear that brain lesions have returned. I’m hoping your new treatment is tolerable and successful.
On another note, I am inspired by and pleased to hear about you having a break from brain mets lasting years. I am fairly new to this and hadn’t really thought that was possible, thanks for sharing.
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I tried anti HER2 CAR T cell therapy but it didn’t stop progression in my cerebellum. Finally I restarted IT chemo plus Avastin on Thursday, after stopping it in October, and finally it is helping.
It’s unclear if the car t-cells did anything.
Ann
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I had my 6 month routine brain scan today. The results were a little mixed. There is a spot in/near the tumor bed of my craniotomy. My Neuro onc isn't sure if the spot is new growth or scar tissue. He said the scan angle this time was ever so slightly different from my September scan and that is why he is uncertain. So he would like me to be re-scanned in 4 months and see if the spot has changed or if it is in fact scar tissue. I just wasn't expecting this news today and am still absorbing it.
Thankfully I see my MO tomorrow and will get results of my bloodwork and see what his thoughts are on the brain scan results. The cancer roller coaster continues...
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goodie, Praying for scar tissue.
Left foot forward, sorry to hear about the progression but a three year break means your cancer was susceptible to treatment so that’s good news. We will be here to listen.
Mara, how are you doing?
Agnes’s, so good of you to check in. Glad the IT is helping
Josee
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I am doing OK. Am on 2mg steroid as of this past monday. Will have 5 treatments for SRS to my tumours. I do not have the halo, we use a mesh mask for back of head and I am held in place with a custom molded mouthpiece. Looking forward to getting this done. Not too worried about SE since is only tumours being treated, not WBR this time.
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Slowly going down on steroids and feeling more like myself, but I fell today and struggled to get off the ground, that was happening before going down though, but most of other symptoms are getting better.
Edited to add when I tried later I got up just fine, not sure what was going on... But seem OK now.
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meeting with RO tomorrow. I am interested in hearing what they have to say.
My MO informed me today that I cannot get the medicine she was hoping for via compassionate care. So she said she has recommended going back to a Tykerb Xeloda combination. I have been off Tykerb for almost 3 years and Xeloda for 6 months. This might keep me from WBR.
I assume we will have a more definitive plan within the next few days.
Thinking ofyou all
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Hi Fellow Brianiacs! Has anybody's mets been treated with gamma knife, but then progressed, and then had long term success with WBR?
I had gamma knife to 8 lesions in Feb 2016 and over the last 9 months, 5 of them have slowly started to progress (they initially just thought it was treatment effect). I tried Avastin, but that didn't stop these stubborn buggers, so now they are most likely going to recommend WBR, hence my question.
And I am honestly debating if it is worth doing. I have been dealing with being physically and emotionally tortured by cancer since I was 14 (I had leukemia as a teen and went through two very intense years of chemo during high school.) I will be turning 37 in May and was diagnosed with MBC de novo the week of my 33rd birthday, and maybe, after all of these years, I am just done at this point. I am not sure if it is worth going through it to delay the inevitable anymore.
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Looks like I'll be joining you ladies, as well as the bone mets girls. Had a brain MRI this morning and they already called to say I had "suspicious spots" on my skull and a definite met on my cerebellum to go along with the mets in my spine. Fantastic. Myself and you ladies are the only ones that know this information at the moment. I'm not sure my husband can take it
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RO says they can do gamma knife to my lesions. Said he might find s few more when they scan me prior to treatment. I am so relieved that this is an option for me.
Cancer is crazy when receiving 3-5 hours of gamma knife to your brain is good news.
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Becs I am so sorry to hear this news but I can’t provide any direct knowledge. We are here and behind you for any choice you make. You have been fighting cancer for so long and it has stolen so much from you. I wish I had more to provide.
BigPeaches, so sorry you have to join us but it is the worst at the beginning. The shock and trauma is just paralyzing. It will get better with more information and a treatment plan. I had a large tumor in my cerebellum and had surgery radiation and now on Ibrance and femara. Spine mets too but Ibrance and femara stabilized those suckers. Deep breathes and thinking of you. Ask any question you have!
Left foot forward - it is a crazy world we live in to be happy about that but I understand. Keep taking the first step and soon it will be in your rear view mirror
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So, my hair is falling out in large clumps, all over the place, so much so that I am really contemplating shaving my head, even though I am not on chemo (yet) or anything, just found out about the brain met yesterday. Anybody else have hair loss issues? My Onc actually said he has no idea why my hair is falling out. Just another scary thing to add to the list.
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Becs, “brainiacs”, lol! 😆
Bigpeaches, no idea why you hair would be falling out prior to chemo or radiation, sorry.
Leftfoot, looks like I’ll be joining you for Gamma.
Met with neuro rads onc yesterday and latest MRI shows 4/5 original mets gone, 1 remaining and 4 new hitchhikers. Bring on the medieval torture device 🙁
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Peaches - It could be falling out simply due to the sheer volume of stress you are feeling from this diagnosis!
My mother always losses large quantities of hair during extrem stressful periods in her life. Some people lose weight, some get exhausted, and others may have hair fall out. Maybe, talking to a therapist (or even seeing a dermatologist, might help get your hair back on the right track) could be beneficua
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I am so to hear of so many of us dealing with progression. Hopefully we can zap those buggers into submission!!!
I saw my MO on Tuesday. He was shocked to hear my Neuro Onc saw a suspicious spot. My tumor markers, liver function, and other bloodwork look great. So we decided to do a full body PET in July (insurance issues) and then my Neuro Onc will also do a brain scan in July and we will have a full imaging picture of me. July seems a long way off, but my MO agreed that if the Neuro Onc was waiting 4 months to re-scan, the questionable spot wasn't too big of a concern. So back to life...and trying not to think constantly about what July will bring.
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LFF, glad to hear they will gamma knife the lesions and leave WBR for now. Much easier recovery.
Becs, I am sorry your lesions did not respond to gamma knife or avastin. If WBR is put on the table for you let me know. Will be glad to help.
Sorry to everyone finding themselves here but we are a good group.
Update on me, had slight progressions of tumours where my original met was found. We are radiating the full surgical cavity since it looked suspicious for more lesions. No symptoms occurring since very little edema. Only have needed 2mg of steroid per day and still fully active. I have had two treatments so far, will have three more starting from Tues of next week. Still walking and active which helps with any stress, though I have been remarkably calm. Only thing I find is a sore jaw after since my cancer centre does not use the halo that screws into your head. I am custom fitted to a mouth piece that assists hold my head completely still. Looks like the picture below.
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mara- I can see why your jaw hurts afterwards. I have never seen that before.
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LFF, it is a weird contraption but preferable to the halo. I just take tylenol after and it is not too painful. I am thankful for no SE and being on only 2mg of steroid have not impacted my sleep or QOL. I completed 2 of 5 treatments Have the next 4 days off due to Easter which is nice. Hope this takes care of things for a while.
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Goodie, hoping July brings good news for you.
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Gotta have a spinal tap next Thursday, what am I in for? I hate needles 💉🔪😬
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Thanks, Mara. I hope your remaining treatments are easy on you. You are in my thoughts.
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Illimae,
They will prep you by injecting lidocaine into the area of your spine about 4 inches above your anal cleft. Then they will ask you to lie down on your side, with your knees to your chest. The doctor will then insert a longish needle (you do NOT want to look at it) into your spinal canal, between vertebrae, and extract some spinal fluid. You will then be asked to lie quite still, while your body repairs the puncture. I have heard of times as short as 6 hours, but I was asked to lie still for 20 hours. You can certainly ask for some sedation to make this possible. You won't die of moving too soon, but you can get a thumping headache.
Hope all goes well for you.
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Thank you blainejennifer, I appreciate the breakdown of events. I have a tattoo on my lower back from 20 years ago and I still recall the part closest to my spine being very unpleasant. I’m pretty sure they said I’d have to lay still for at least 1 hour, I sure hope so, I can’t image 6 hours, let alone 20, yikes!
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Can you ask for some EMLA cream to numb the area at home, so that you don't even feel the lidocaine needles? I love that stuff, and use it to numb my port area. Put it on an hour before people are due to mess with the area, and cover the area with a non-absorbent dressing like cling film, or tegraderm.
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