Brain Mets Sisters
Comments
-
Apple, I have seen your posts about the tea and have bought some. I love it. No cramps and things move naturally,thank you for mentioning it!!
0 -
Apple, thank you. I will try it. No block ups for me. I am worried aboutit being diet. Fake sugar and I have never gotten along. xoxox
0 -
Hi ladies - I have been posting in the triple neg forum, but it looks like I'll be joining you here now. I was diagnosed with brain mets about a month ago (after getting the all clear on mammo/sono in June). Have multiple lesions. Had surgery to remove the largest one, then rehab and WBR. It all happened so fast and I've had so much to deal with that the emotions are just hitting me now. I just cry all the time. This is very hard. It's good to know there's a place I can come when I need to.
So far I've only seen my RO, who was very vague, and I'm still waiting to see my MO. I know this is grim, but I think its time to know some real info. Anything you can tell me about survival time, or what the course of this is likely to be, or if there are chemo drugs that will work on the brain-- would be very helpful.
Thanks for listening.
0 -
Dear Hope,
It is absolutely scary. I did have a friend tell me that HER friend lived 10 years w brain mets. I cling to that.
Best of luck. Kathy
0 -
I am so sorry Hope. It all happens so darn fast. You have done the hardest part WBR!! Everyday gets better. We are still here, alive and kicking, let"s make plans and enjoy (between crying) what we do have!!! (I cry every single day) This effing cancer, doesn't get EVERYTHING. I am watching golf, baseball, and I kinda tricked hubby and daughter into each bringing me a Starbucks, and donuts. I still got it!!! Really quick. I would never ask what kind of time I had left. No one knows, and how dare they guess? I plan on staying right where I am, until I am formally told otherwise. Live, Hope. It is not over. Also, don't listen to everyone. Most of it is just opinion, you know. As valuable as mine!! xoxoxox
0 -
well, welcome to you here Hope. Nice to meet you.
0 -
Welcome Hope, sorry you had to join us! I am with Jodi and living in denial, taking it one day at a time. Today I am here and still functioning as a mom and somewhat wife. I have 5 more WBR treatments so Friday (17th) will be last...woo hoo! Today was my last steroid and I think those are what made me cry. WHat's giving me such a hard time now is I have a mouth sore on my tongue and I can't hardly eat! What I do eat tastes like SHIT! Good grief can't I have one joy!
Hope come back often and we will try to help.
xoxo
0 -
welcome Hope. That's such a nice screen name. I hope you come with your questions - there are so many knowledgable and caring people on this and they have helped me and countless others through some very scary and difficult times. Hugs and aloha to you.
0 -
I for one, would like to know what I am denying. I am alive. I don't think acknowledging that is DENIAL.
Maybe, just maybe, I am thrilled to be here and people are catching on. live live live. And try to make sure you feel as good as you can!! Treat those creepy side effects. They eventually go away. xoxoxox Cathy, i still cry, no control, due to those steroids. My appetite and overall feeling of well being are best when I take 4 mg a day. During WBR, I took way more, and other than the swelling and lack of seizure activity, I effing hated them. Took a few months off them completely, but when my own family thought I was possessed, I thought I would give them another try. I eat like a lumberjack, nothing tastes burnt anymore and I am shocked how much I enjoy food. There were days on end I couldn't/wouldn't eat. My doc finally said, 'you don't eat, you die.' I forced myself until it became enjoyable. xoxo
0 -
Waiting for some friends of ours to pick us up for dinner. We are going to my favorite Italian Restaurant, Cafe Citti. They have the best green salad and dressing!! Ravioli, with a tomatoe basil cream sauce for the main course. Their desserts aren't my fave, so just a yummy cup of coffee for my finale. Super happy to be going the night before my new chemo, bright and early tomorrow. It will keep my mind off my port being accessed. I despise that part. Plans plans plans.
0 -
Jodi sorry to include you with the word denial. Please forgive me!
I am looking forward to the eating like a lumberjack though! I too am living, living, living! We have a daughter having her first baby in March. I can't wait!
Once again sorry Jodi!
0 -
<<< called Jodi Queen of De Nile many times.
BUT, I agree: even though we will die one day, why kill every day we have now? Really living is the key.
I wish I had a chocolate cream-filled donut.
Where are you Reesie?
0 -
hey ladies, more bad news on my end. i feel like i never get any good news. i have a lump in my right breast. a huge, hard, painful one. i feel like it literally showed up over night. its like the size of an egg. I saw my onc on Thu, and she said she would do the lumbar puncture on Tues, and if its in my cerebral fluid then i have to get some chemo called Methotrexate.
She wants to start me on Xeloda the week after, and then add in carboplatin. I will have to get a port in again. after i just had it removed in february bc my veins are jacked.
Today is my 41st birthday. and I feel no joy. i am afraid to die. i can't imagine feeling miserable for the rest of my days. I really feel out of hope here.
My onc said that I will know when I feel done. I just wanted some time when I actually felt ok. so I can eat and enjoy my food, and travel and do some things that actually bring me some joy.
I am now 9 days out from my WBR and spine rads and I still feel shooting pains down my legs and having weird vision stuff. I am 4 days out from my jaw radiation, and my teeth and chin are still numb, my teeth in pain, and now my mouth is FULL of mouth sores. I literally am miserable. every day.
0 -
Hi Ladies, I wasn't sure where to post this. I just saw from Reesie caringpages that she passed away today. I'm still in shock. Apparently she went to the ER yesterday with liver pain. Earlier today she had a heart attack and passed away. I'm so sad
0 -
Cathy, I am the proverbial Ostrich. I want as little unuseful info as possible. I like being called the Queen of denial. You will never hurt my feelings!!! I don't get people who can take information, they can do so little about!! Now, if someone could tell me how I can boss these little bastards,( cancer) around... You know I am thinking good thoughts about all of you. I am so sad and sorry for Reesie and her family. This disease is so unfair. I wish her peace. xoxox
0 -
Spark, you are really in a spot. Nothing like feeling like shit for what seems like forever!!! First off, Happy Birthday. Did you go to Sonoma for the weekend? I promise you it will get better. You need to sit down with your Dr and explain all of these side effects. They have medicines and tricks that will help. Also, I hate beating that poor horse, but you need to take one day at a time. You are overwhelming your already aching brain. Breathe. You are here, obviously 'with it' enough to know you don't feel right, and hopefully, tomorrow you will feel better. Even if it's just a little bit. I remember when I felt like you do. It was despairing. I don't feel like that now. You won't either in a few days or weeks. Hang on Spark. You are young and strong. Hold my hand. I will share what strength and wellness I have with you. xoxoxox Jodi
0 -
Lil Schatzie
Just scrolling through and caught your post about Reesie. So very very sad. Assume there will be a thread later on which to post. She was a real inspiration with such a great sense of humour. Finding it hard to take it in
Lx0 -
Spark: I agree absolutely with Jodi - I spent a month (including Christmas) when I couldn't get off the sofa, couldn't force down more than a buttered cracker and was emotionally desperate. I just watched my family as though I was in a bubble. I thought it would just be more of the same and then downhill from there. I could hardly believe it when I started to feel better. I think you should stop 'dealing with things' emotionally and just rest up and try and notice when there is a slight improvement (when you can go to the loo without planning it for fifteen minutes because it is so tiring, etc). Those little improvements will grow. You will get there.
Shocked and very sorry about Reesie.
Barbara
0 -
buttered crackers sound great.. it's funny how the foods of my childhood sound so good.
0 -
My heart is breaking....Marie...may you rest in peace! I'm still in shock!
Love and positive healing energy to all of you courageous ladies...you are all always in my prayers,
Sue
0 -
I am shocked by the sudden passing of Reesie ;she will be missed
Cheryl
0 -
Hi ladies - thanks so much for welcoming me here. It means a lot to know I'm not alone in this new and scary place. I don't have much else to say right now but I know I'll be posting as time goes on. Thanks again.
0 -
I am so sad to hear about Reesie. Her posts were always upbeat and funny. She was only posting a few days ago. It scares me.
Mx0 -
Sad to hear about Reesie!
Hope, welcome! My brain surgeon initially said think 10 years. She may have been optimistic, but I intend to use that guideline. I've been diagnosed with brain mets for 2 right now...
I'm off the steroids. Now I have to work to get things more normal again. My lady oncologist told me steroids have a big efect on your quads. OK...that explains some things...the things I was doing a lot were coming back, but I need to work on some stuff I DON'T do so much!
0 -
Hi my mum was diagnosed today with brain met, she was taxol for liver mets which have shrunk but they have now found 5 mm met on left side of brain, I'm really worried we see the oncologist Tomorrow, do any of you know if Scotland do gamma knife treatment?
0 -
Pobster
They generally do Whole brain as a catch all the first time around which I've just had x5.
Gamma is fairly widely available at major cancer centres in uk now. I'm originally from Edinburgh but live in Northants and have treatment at the Marsden in London.
Think the western general in Edinburgh does. Not sure what equivalent is in Glasgow.
Have you tried the uk site Breastcancecare or Macmillan for advice? The first site forums are a bit pants at the moment after a revamp but should be improving
Good luck to you both
Laurie x0 -
Thank you for your reply, I will ask tomorrow about treatments, I think hearing the cancer is now in brain is terrifying xxx
0 -
Thanks Barbara, who could ever forget that time? It does get better!! Hope you are doing something fun. xoxoxox Jodi.
0 -
Just back from the big reveal. MRI 3 months after WBR shows the same number of little buggers, but they've shrunk. So I'm electing to be happy (altho I wish they were just gone). Going to get a referral about gamma knife. Have too many to do at once, but I figure the fewer the merrier for me.
Paula
0 -
Oh Paula I wish they were all gone too. I am sorry they are stubborn. Gamma knife to get rid of whats left sounds like a good plan.
0
