Brain Mets Sisters
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P.S. the problem with the mask ended up not bothering me at all. Was able to breathe through my mouth enough to cover it. The tech was great about it, and said she wasn’t starting until she felt I was comfortable enough, and she was a real help!!! Yea for good techs!!!
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Dacadron / Dexamethasone is my BEST FRIEND!
I was in church for communion this a.m., and I waited to take my Dex until AFTER participating. If you do communion the "right" way, you are supposed to fast b4 accepting the (gluten free, ha ha) cracker and grape juice. [I'm Presbyterian, and they generally aren't real strict about adhering to all the rules, but I feel I have to stick to the Orthodox standards because that's just me. BTW...if you're Eastern Orthodox, they won't even give you communion as a woman if you walk up there with lipstick on. Gotta show up without it, or wipe it off
]Anyway, I started seeing the usual black spots and alternating bright spots in my vision, but after we had Coffee Hour with pastries and fruit in the Fellowship Hall, I took my vitamins and my <2 mgs of Dex, and I was fine in about a half hour. Obviously, there's some pressure and inflammation still behind my eyeballs, even after the WBR I had some months ago.
So, if I have to keep taking it until the day I die, so be it
.L
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Lita, I’m really glad that it works so well for you! I hope it does what it’s supposed to do for me too! Glad you were ok this morning too after church.
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Last cyber knife today!!! Woohoo!!! Hope they blasted the hecKOutta that spot!!!
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Good Luck Gracie.
I am having an MRI to make sure that the lesions that showed up in 2017 are stable or shrinking today. My fingers are crossed. My brain is the only part of me that is misbehaving. Still fortunate to be NED below the neck but obviously I need my brain LOL
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Mara, praying for great news for you!!! Third cyber knife went well. Now to give it about four months to work!!!
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Thanks again Gracie. Hoping for good results for you as well.
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Ok, I know all the warnings about not looking at stats and I was not searching but gosh this brain met has changed everything. Who here has done well long term on cyber or gamma or wbr? And does it really change things? My onc, yo be honest seemed more concerned about the liver met. I need some cheering up!
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Gracie....I have a friend who was diagnosed with bc, who was in treatment at the same time as someone with single brain met 12 years ago and is doing fine. I personally know someone who had brain mets - I don't know if they recurred but I know she's still here - stage 4 for close to 20 years. These stories give me hope. I hope they do the same for you.
-A
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Thanks A!! I know we are all different but I really need those kinds of stories right now, so I appreciate your posting for me! Hugs!!!
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I got good news with my last brain rads. Lesions shrank by more than half and less thickening.
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Gracie/ I went over 5 years after gamma knife treatment on two brain mets before I relapsed there. Don’t pay attention to those stats.
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Mara, that’s good news!!! Hoping and praying it just keeps getting better!!!!
Leftfootfirward! That’s incredible! I hope and pray mine work out the same!!! Thanks for letting me kniw
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Yay Mara!
Thanks for sharing leftfoot, good for you 😀
Gracie, my MO and neuro rads onc, don’t seem overly concerned about my brain mets, WBR may be in my future but for now they’re small and responsive enough to just Gamma and go. I can still do everything I did before cancer, just much slower now thanks to tamoxifen, lol
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Thanjs Mae! I was kind of surprised my mo just didn’t seem as concerned about the brain mets and was hoping it was because they are having such good results with it! I hope that’s the case for all of us
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ally bee,
I understand the time on your hands. I had a craniotomy in 2016. My daughter was with my parents and for the first time in a long time I had nothing to do and it was awful. Do whatever you need to occupy the time. But the surgery was I ditto easier than my lumpectomy with ALND and if not for the location causing fluid to build up over months that I ignored the headaches I would have been outta there in a day or so. But I ended up in the hospital for 10 days while I had a drain. the worst was the boredom and fear. And they didn’t get the results to me for weeks which drove me crazy. Either way it is just a big bump in the road and there are many of us doing well with our new normal. I was 33 when diagnosed and 37 with Mets so I understand. Vent. Ask. We are here.
Jose
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Hi Again
thank you everyone for the well wishes. I'm back home now and feel surprisingly good. The odd headache where the incision is but as long as I keep on top of the paracetamol it's fine. Had a few eyesight issues that the surgeon puts down to swelling and they seem to be lessening. The MRI after the surgery looks good and they think they got everything, but I guess there's always those little cells that could be hanging around. Trying to take it easy for the weekend before I start following up my local Dr's for the next step in treatment. At this stage maybe more surgery to remove my opposite side lymph node, radiation and more chemo. I love reading all your posts, it gives me a little bit of hope that I'll be around for at least a little while longer.Sorry edit to ask for your opinions on something. Do you think I should ask for an MRI of my breasts before going through with lymph node removal? I've had cat scans and a pet scan and it only showed activity in that one node. I'm just thinking if there's any chance of breast cancer in either of my breasts I'd like to have a mastectomy not just the axillary node clearance. (if it's even an option I guess)
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Ally Bee, glad to hear you feel like things are going ok. I had my cyber knife on my tumor last week but before they decided, they were talking about surgery to remove it. It was about 2.5 x1.2 cm. They finally decided to try it with cyber knife so now I wait for three months and another mri to see if they got it. Wishing you a quick and easy recovery! It amazes me the things we all go through! We are all true survivors
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Thank you Gracie. Wishing you the best results with your MRI. From everything I've heard about the gamma knife it can have some amazing results
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Hey all, finallly got released from hospital and am home to recover from surgery. They got all lighted up on the mri pre surgery and I am fuming about the lack of communication between doctors, assistants and nurses. When they did the pre surgery mri I have been told that there were no new spot showing up since the mri before which was 2 weeks before. On base of this control mri they did the surgery and obviously all went well.
Yesterday I received a doctors letter to be released from hospital and was quite surprised the assistant doctor noted down they saw in this 2nd mri a new spot in my central brain they think it could be most likely a new brain met of 8mm. When I have been in hospital everybody couldn't get tired to mention over and over again how happy they were with how all went. My doctor even said my brain looks pretty okay now apart from the surgery defect and he referred to the post surgery mri with contrast.
I am pretty confused and scared and have no idea how to behave. I have been scared anyway not knowing if they removed scar or a local recurrence and definitely can't get my head around the fact of a new spot at the crus cerebri.
Does anyone know if this is a critical place? Can this spot be radiated in case it really would be a new spot? Or even taken out? I was pretty assuming I just have to wait for the noonday of the old spot and will have some peace for the rest of my body until the next scans in september.
Appreciate a lot your uplifting words and advices, thank you!
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if and I mean if it is a new spot, as long as it’s not on /near the optic nerve or brain stem it is my inderstanding that gamma knife can be used to treat it. So good news there. Of course I am not a Neuro onc or Neuro surgeon.
I would definitely follow up with your oncologists/surgeons and find out if there was a new spot.
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thank you LFF. I just came back from my neurosurgeon and received some very good news. Pathology report said it is only scar tissue, no recurrence. Obviously it is not uncommon that after a year radiated scar tissue can grow and cause symptoms.
The spot they have seen didn‘t show up again in the control MRI with contrast. It has just been an interference due to some light head movement. If it were a met it wouldn‘t had disappeared on the last mri and it only showed up as a thin line which is not very common for mets. So definitely no new spots and some relief for me today. I am sorry for panicking, i was so heavily stressed. Will take a nap now, love to you all
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Great news Clementine! I'm hoping for similar news at the end of the month. My scan in March showed the possibility of a new spot in my tumor bed but my neuro onc was unsure if it was a teeny new met or scar tissue because the angle of the scan was ever so slightly different than the previous one. We'll see what this scan shows. I'm crossing my fingers it's gone or can be decided for sure that it's only scar tissue.
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that’s great news Clementine. Nap and then celebrate.
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great news clementine!
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Good News Clementine!
It has been a couple of weeks since WBR, and I'm finally starting to feel normal. Fever is gone, stomach issues are gone and just a little bit tired. This is relief to me, I was starting to think I would never get back to my normally happy self. I don't like to dwell on things/cancer and try to stay positive. But it sure is hard to do when you feel like crap.
Cheers!
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Good to see you are all doing fine.
I still have to deal with shitloads of scary thoughts although they said my brain is clear (which has been checked 3 times with contrast). Even my spine is clear, this has been checked via MRI with contrast mid June aswell.
You’re right, it’s quite hard to stay positive. My body is still exhausted, my brain still has a quite big hole in it. I know that’s a lot of stuff to deal with and I need to give my body some time to get along with this.
Love to you all
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Hi all,
I'm not sure if I'm posting in this in the correct thread ... but here goes so my mom was recently diagnosed with having to brain masses one is about 2cm and the other 4cm, I cant express to you all how worried I am , (she was diagnosed stage IV last year) what to expect , will she be okay , will they get rid of the brain masses? I just wanted to see what everyone's experiences were like, and if anyone has a similar situation like my moms , I guess I am looking for some one to talk to... thank you
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I had 5, they were treated with focused radiation. Several months later and MRI found 5 new ones, which were treated again the same way. Anything you google is old news, a lot can be done to improve your moms situation.
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thank you illimae,
I have to say you're absolutely right I need to stop googling, it makes my brain go crazy, my mom has an appointment with the oncologist on Wednesday , but today over the phone they did say it was radiation or surgery, I am just so scared of the future , but reading everyone's posts here does make me feel better .
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