Brain Mets Sisters

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!!

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.

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  

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

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

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!

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. 

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

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



Lx

buttered crackers sound great.. it's funny how the foods of my childhood sound so good.

I am shocked by the sudden passing of Reesie ;she will be missed

              Cheryl 

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.

Mx

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?

Thank you for your reply, I will ask tomorrow about treatments, I think hearing the cancer is now in brain is terrifying xxx

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