Brain Mets Sisters
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Hi K-Lo,
Saw onc yesterday. My first MRI will be on 6th May. They will do a body scan as well. In the meantime they do not intend to put me back on chemo (holding Navalbine and Herceptin in reserve for now). Onc wants me to take Letrazole since i am weakly ER receptive (3 out of 8).
So i get a bit of a chemo holiday! yay. May 6 will be scanxiety central...
What were the results of your March MRI? Good news i hope...
Lassman
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I'm 3 treatments from being through with my wbr. The skin on my forehead is getting sensitive and I feel a little off but otherwise it hasn't been too bad. Still taking 8mg of decadron which is making a good night's sleep hard to get (some night's are ok, but last night was rough). Talked to the oncologist yesterday, she gave me some hope (much needed I'm afraid). I get a couple weeks of rest after rads and then I'm onto Herceptin and Tykerb. Now I've had two brain recurrances while on Tykerb, so I don't know how much good it'll do, but it is better than nothing. Then there is a clinical trial that I can get in on, if I progress! Good to have options I guess.
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Thanks pdq. I am thrilled to be done, I know it will be a few months until the side effects go away. tcrs, I am sorry for your latest discovery. It sucks. One day at a time is how I get by. It is all we have anyway. If things are going to be bad in the future, I am certainly not living them twice!!
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Dear Lassman, I meant to post good news: 8/9 lesions are gone and the one that had to be zapped by linear accelerator is dying off. I have one small new one easily treated next week. Neurosurgeon said that if " new chemo gets lung Mets under control, the brain Mets will stop". I quote.
So all hope is on halaven. You are lucky to get estrogen blocker.... I failed on that. But Scanxiety made me miserable I was sure I had a head full.
Tcr: there's no way to help you absorb this news . Its just time. Brain Mets is not the worst harbinger as I once thought it was. I have no symptoms except I repeat things. I have no symptoms except I repeat..... just kidding. I have an eye tumor also.
It is a wise saying to not suffer every day for what we fear is going to come. Kathy36 is 14 years living w Mets.... traveling, enjoying as much as she can. We don't know, so do what you really love and love who you really love.
Love. Kathy0 -
Just has brain MRI 2 1/2 months after finishing WBR for over 30 small lesions in the brain. All lesions but 4 are gone. The 4 are much smaller and the doc thinks they are still shrinking. He says not even worth doing the gamma knife on them at this point. WBR does work! Praising the Lord! I was soooooo happy to get some good news. Gettting the news about the brain mets in early December really hit me hard, so to know they are all almost gone is wonderful. Still having lethargy from WBR and sleeping a lot but doc says that will clear up soon too. Now looking forward to having my hair grow back! For all the strong women out there fighting brain mets wtih WBR...hang in there and stay strong.
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mommydoxie that is awesome news! Congratulations. Thanks for sharing!
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I am so glad for your happy news - our brains are so precious and it is a great feeling to know they have been 'cleaned up'. Congratulations!
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Mommiedoxie -- fabulous news! Feast on that! K-Lo : I will put that Halaven and your name in my God box!!
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K-Lo,
Wow, that's great news. The gamma has certainly given the little buggers the boot. I really really hope Halaven works for you as well. At least you still have your sense of humour re mentioning things twice - made me laugh.
Know what you mean about the scanxiety. I get really edgy a few days before my scans. Jodimomoffour is certainly right about not living throught things twice. Have to remember that.
Will post when i get scan results.
P.S Best wishes to all my other brain mets sisters.
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Lassman and K-Lo thanks for the words of advice. All so true. Mommydoxie, it was so wonderful to hear your good news. K-Lo are you noticing anything with your eye yet? I'm hoping everyone waiting for test results gets good news. The 14 year survivor was a very encouraging post. Thanks for sharing.
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Great to hear such positive posts today! I'm still struggling through - trying to rest o be present when I'm with the little ones.
Jodimomoffour, I did some nasty chemo last year - needed the shots to increase WBC production, too. Mind over matter worked for me - in the beginning there was no way I was going to give myself a shot a day for ten days each two weeks! But we surprise ourselves with our strength sometimes...0 -
K-Lo, mommydoxie ...thats really great news u girls..!!! so so happy for u..!!
)Lassman, mum also has scan in may, so we r in the same boat..!! praying for u..xx
Rohm, hoping u dont get too many side effects ...hang in there, sending u positive vibes and loads and loads of luck..xx
On a slightly sombre note, mum still suffering from side effects, and also getting breathing issues every now and then, dont really know what it is..she says she feels her head gets really heavy and effects her breathing..any one here with similar side effects after WBR...? spoken to onc and he does not want to do a scan on mum till may, which will be six months from WBR..he wants the femara to kick in..this long wait is really torturous..
loads of love xx
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loads of love... i like that bestfriend.. a new meaning for LOL
I'm here in San Diego, micromanaging the family vacation.. Brain seems to be working ok after the 10 WBR zaps (4 to go).
Fortunately, my musician's job is lucrative and easy now. It used to be much harder but I have a new position.. (great deal).. I am compromised musically, but no one knows..
Greetings and best wishes to all.
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Will have 8th of 15 treatments today and I am beginning to feel very fatiqued. The blurry distorted vision in my left eye isn't helping either. I'm trying to do as many of my normal activities as possible.
I hope this doesn't get too much worse. I don't think it's the steroids as I'm only taking 2mg per day.
I can't imagine the effort it must take to deal with the treatments and take care care of young children. Incredible women.
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Apple your talents more than compensate your disability!
Tcrs, I agree, I couldn't imagine taking care of young ones. Fitztwins says that's what keeps her going though.
My dog is a great comfort but makes more housekeeping for me.
Hope things get better with the blooms and birds of spring.0 -
Good morning!! I just e mailed my oncologist and told her to put off my cat scan and chemo till after the 1st. I need a break after that radiation. My birthday is the 1st and our oldest son and grandest daughter will be here for a week from Washington State. We are in Northern California. I would like to feel my best when they are here. I cut my steroids to 2mg a day. I hope that helps with the crying jags. I admire and think about all of you everyday. Onward and upward.
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Jodi - enjoy your familyand birthday!! My crying jags are few and far between now that I am down to 1 mg of prednisone..hang in there!!
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Thank you chainsawz/ I feel so much better today than yesterday!! Ridiculously tired but not as nauseous. Such a gross feeling. My appetite is absurd but sometimes I think I need the sugar high to make me feel better. Hopefully, our tomorrows keep getting stronger. xoxoxxo
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You go, Jodi!
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Update to my weekend so far. I actually got dressed and went Prom Dress shopping with my baby. Alyssa is our senior in high school. And of course the baby of four. The shop was a little overwhelming given that it's a bridal shop too. Lots of teens and their mom's, aunts, sisters etc. Those girls are absolutely adorable. I hope we enjoyed that part!!
Wissie ordered a beautiful deep purple gown and she is going to be stunning. Oh, it wasn't all great. The bawling was out of control, and our daughter told me sometimes she forgets, I am handicapped!! I did laugh. She really did have to help me walk. Not digging that part. I have always been the mover and the shaker. I am adjusting. I refuse to fall. If nothing else, I will be graceful!! Hope everyone's enjoying their weekend. Hugs to all. 0 -
You gotta chase those good times. I think its good for young people to know how to help fragile folks like us!
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That was a day for the memory book - glad you had the experience and it must have been very important to your daughter. Hope she has fun on the night!
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So the obnoxious bawing is ridonkulous. I told my family we need to text more. I cannot bear not being able speak. I was born talking. Come on, 5 sisters!!!! Anyway my speeched is jacked, but my mind is not!! Mark, my husband has been amazing through all of this, and our kids are the value of my life. We'll see what happens with our new media!! Hugs Jodi
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Jodi i lost where you explained your voice problem. Im having vocal cords issues.... can you share again?
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Hi K-Lo. I sound thick tongued and I don't feel like I can say too many words at a time. The crying is embarrassing. Just communicating that way is so not me. I think my vocal cords are involved too. Keep me posted with your speech and how you are doing. Hugs
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Hey everyone...didn't have the WBR cause I didn't have enough lesions to warrant it. If my main one would just behave, I'm in good shape. Right now the doc sees nothing to be concerned about in my brain! Works for me! I just wanted to say I think tring to figure out WHY or WHEN this happened is counterproductive. ____ just happens! Same as we don't know why some people get the disease, we don't know why for some it spreads. When they figure those out, they'll really be on to something. Just work hard to enjoy things...and for me I try to keep things reasonably normal for my kids.
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So happy for you not having WBR. I have never wondered why me. I wonder why anybody. Kids make everything better. 0
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Logged in to update- this will probly be my last post but I'll still lurk around every once in a while...........Well my mom Angelina Barrientos (47 yrs old) passed away last week on Saturday March 10, 2012 and her burial was on Wednesday.She passed peacfully in her room surrounded by family. She had gotten out of the hospital and wasnt doing really good. On Tuesday night last week I had given her some medecine to swich around her mouth for thrush and she swallowed it and got this real bad cough that lasted for about 1 hour. She finally calmed down and fell asleep. The next day she didn't open her eyes at all and didn't have anything to eat or drink for the next three days. On friday she stopped breathing twice which was a sign that she would leave us soon. Then Saturday morning like around 4 am she took her last breath. It was the saddest day of my life. I know that now she is in a better place where she is no longer suffering which is what keeps me going because I know she wouldn't want to see me crying all the time. It's very hard and I think especially tomorrow is gonna be harder because the kids have been off for spring break and they go back to school tomorrow and the rest of the family that came from out of town left today. So everyone is going to be back to the usual and Ima be left alone at home. I don't work and all I did everyday was go next door to my moms and take care of her all day. For a whole year thats all I did was be with my mom take her to dr appts and be with her all the time. She was the best mom and my best friend. I will miss her so much. I even told my husband I was buying the plot next to her at the cemetary but my dad ended up getting it. If he didn't I would of got it. Well I wish everyone on here the best of luck and too keep on fighting. Hopefully one day there will be a cure for this horrible beast that is taking so many lifes.
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Lore81--I am so sorry about your Mom and wish you peace.
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Hair starting to fall out. Treatment 9 of 15 today. Very tired not looking forward to this week.
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