Brain Mets Sisters
Comments
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While I do not have brain mets, I wanted to stop in and let you all know that I am praying for you.
~Cate
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We appreciate your thoughts, but this site is for us WITH brain mets.
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Excuse me, didn't realize prayer had limitations. I'm new to this stage 4 thing.
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This is a brain Metasis site. Not stage 4. It isn't personal that it is an exclusive site. It just is. From what I understand, there are sites for those who do not have brain mets. The prayer part of your comment, is just silly. Nothing of the sort was said. Jodi
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well surprise surprise surprise.. think Gomer Pyle.
I get to teach her son Anthony (there are two Anthonys.. Anthony Christopher is in a wheel chair, serverely handicapped and Anthony John is 7 and oh so ready to start. I can tell that he understands instantly.. his eyes just clench or something. He will be a joy to teach... he already knows quite a bit. I am starting Anna by letting her listen.. she is raring to go, but Jane the mother will teach her a bit for a month or so.. so i get TWO new students. I taught her one little skill to start on. boy i love these kids. Anthony was quite nervous.. they all are the first time.
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My son, who is a real worrier and sometimes gets a bit obsessive/ compulsive (they have had to limit his hand washing at school) has piano lessons. I was worried that he would either hate it because of the need to practise or become obsessive about it - he does neither, it calms and relaxes him. He does get cross when it goes wrong but not in an odd way. He's not a natural at it but I love listening to him play, especially when he has learnt something new and is excited for me to hear it. He get so much out of his lessons, sometimes I want to hug his piano teacher - but I think that might frighten him, he is a lovely, kind,shy man
No travel insurance (for medical bills anyway) means I shall never be able to go on a holiday like yours jodi, although I can still travel in Europe so I'm not really complaining, but it means that you MUST post photos
Cheers
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Jodi-- I was sincerely sorry. There was no sarcasm in my response at all. When I meant I was new to the stage 4 thing, while it is new to me, I meant I didn't know there were certain places I shouldn't post. I'm still trying to figure things out. I won't post here again.
~Cate0 -
K-Lo.. just read about imbell..
So sorry to hear that. may she rest peacefully and prayers for her family. yeah.. see you in the clouds.. i like that.
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I just saw your note about imbell. Gone too soon. So tragic. Wishing for strength for her family.
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Just to be clear, Imbell did not pass recently. But someone asked me which friend I started this for.... with me then getting it myself, irony and all.
She was in a state, though. It affected her thinking such that she could not find a place to post. Its so unpredictable, no one is exactly alike in this game. Rest in peace, indeed, friend.
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Need hope for my mom that just found on her cancer has spread to her brain. Still waiting to find out if it is also in the lining of her brain and spinal fluid. Any positive stories from survivors with bc to spinal fluid and lining please send them to me soon.
You are all so amazing and strong!
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Hope 4-
I was just diagnosed with leptomeningeal mets (mets to lining of brain, spinal cord And cerebral spinal fluid). The first thing the oncologist told me is not to look on the Internet. The data is old and she has successfully treated many people. She did say that the difference is that I would be treated aggressively (in the past this diagnosis was seen as a death sentence and treatment was suspended). She even has a patient that was diagnosed with this type of spread 10+ years ago!
That said, my treatment will be chemo given intrathecally. This required the insertion of a new port (called an Ommaya reservoir). I had it done today- not too bad all in all.
Good luck to your mom. I hope whatever her diagnosis is, that it is gentle and effective!0 -
Hi Everyone,
It's been a while. Next week I have SRS on 7 of my small lesions. I am a little scared because I feel great and WBR knocked me out. You all sound like you are doing great!
Katie0 -
What is SRS Tiger Blood?
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Tiger Blood, your family is adorable. Just sayin'.
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Apple,
Steroestatic radio surgery! And Jodi thanks!!!!!!!0 -
So my adorable husband, left to golf, while his helper mowed, blowed, edged all 8 acres. Needless to say, between the noise and the fumes, I thought my head would explode. I tried flagging the worker down, but everytime I staggered over to where he was, he was gone. 7 hours of it!! Now, my question is, do I strangle my husband, or do I poison his dinner? What the helicopter was he thinking? I can't drive and I was here alone. I didn't find it very neighborly either. What ever happened to peace and quiet? Good thing I had edibles.
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I've heard the Halaven may thin or take your hair...different people, different experiences.
Apple...if they're planning chemo and a mastectomy for you...not that you WANT them, but the good news is there's nothing final about ANY of that!
So today I INCREASED my steroids after stepping them down..bummer! I couldn't do anything yesterday, so am trying not to complain. The 'roids are supposed to be for a month or two to get through some necrosis, but there's no exact science here. Hopefully things will get back on track in another week or two... This is a non-surprise response to some SRS follow up from November....yep, side effects may show up in about 6 months!
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This whole brain mets thing is so many ups and downs for us! There really should be SOMETHING positive for us, like we become supersmart or really light up a room or SOMETHING.
Found out today I've had liver progression, so I'll be leaving Faslodex (which I loved because I had no side effects, really) to a pill-form drug called Etoposide (or some spelling close to that). The bad is I've never heard of it and the side effects sound gnarly (and I'm a known getter of rare side effects). The better is, I guess, that it's supposed to cross the blood-brain barrier.
The onc said it is good that I haven't had any headaches after getting off steroids, so I guess I'll have to settle for that for my good news of the day. I have much to do in July, in particular, so I hope this drug isn't a couch potato special. Paula
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Thank you so much for your reply. I really appreciate you sharing your experience with me!! I am so amazed by how strong you all are....
Somedays when I get really down thinking about my mom and what she is going through...I have to stop myself and say if my mom is not feeling sorry for herself and she is still living her life to it's fullest with everything she has had to endure with this awful disease. I sure as h*ll can't sit around moping.
Love hearing all of your stories. You are all so Amazing.
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Paula
There is a bit about the drug here:
and here: http://www.chemocare.com/bio/etoposide.asp
Seems like it is usually given in other kinds of cancer but hey, you can be our trailblazer in MBC!
Hugs
Laurie x
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it would be nice to have automatic ESP with brain mets.
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Thanks, Alesta, those sites are very informative. Also found one that says no grapefruit (which is fine), but no alcohol? Not that I actually get to have much anymore anyway, but still.....
Apple, how about X-ray vision, that'd be a good one to have after having your brain zapped.
Hope you all have a lovely weekend. Paula
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Yipeeeeeee for 5 more or 4 by now for Aloha. You are going to have so much fun!!!
jenn
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Hi jenn, 4 more snoozes. We leave at the crack of dawn Wednesday. I hope it's nothing but R & R, especially for more husband. He works ALL the time. I do nothing. My hands tell the story. Soft as a babys. Because I don't do s@@T. Hugs Jodi
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Been having a dull pain at the back if my head towards the bottom right where the neck meets the scull. My dr ordered a ct scan for next week and I'm so nervous it could be a tumor. My back has been hurting for almost a yr after bmx and lately my neck too. I'm hoping it's just a nerve ir muscle or even an SE of my new chemo but still can't stop thinking the worst.
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Kita, hoping with you that it's something not so scary as brain mets, too. It is hard to wait. Paula
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Kita, don't live a bad thing twice. Picture everything the way you want it! I am rooting for ya!! Good, positve thoughts coming your way. Hugs Jodi
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Jenn.. i am helping you count your sleeps.
i sure am balance challenged first thing in the mornings.. it's only for about 2 minutes but very noticeable. I definitely need support.. like a wall to lean on on the way to the john.
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Apple, I think I am the one counting sleeps until Maui. We are down to 3 more snoozes. I am with you on the balance thing. I am always on high alert for whoever thinks it's 'no big deal' to leave tennis shoes and clothes in my path!! My walls and doors are my balancing beam. I sometimes need a hand, not an elbow. I always ask whoever to pretend that we are boyfriend and girlfriend. I don't need to look like an elderly woman, holding onto her boy scout. I just need the balance. Hugs Jodi
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