brain mets
 

I can hardly type those words. Dx yesterday with brarin mets. 5-8 spots they could see on MRI. Largest 2.6 cm in cerrubellum sp. Had 1st rad tx yesterday too wbr - also on decadron. I think 4 weeks of wbr. I was feeling woozy and had headaches and thought it was from the oxycodon after surgery on my leg 2 weeks ago but after a week of not having the drug I knew it was something else. Thinking back I've been really off tired and weak for over a month probably it was this all along.

I'm kind of emotionally numb, scared, thinking is this the end now but holdibg on to all the success stories with brain mets on this site.

I also had my first eribulen tx on Monday but have to quit now til rads are done.

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Oh Pam,
I am so sorry that you had to join my club. I am rooting for all of us to beat down the mets. The success stories are what's giving me hope -- StephN, Joan, Barbara H, Brenda, CourtneyL, Kavvy (and others I probably forgot). Just know that I am praying for you that you can beat this one too.
Hugs and Love,
Kris...

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Dear Pam, I am so sorry and upset after reading your post. You went through so much already with a lot of courage. I hope you will get rid of these mets real fast. Keep fighting. I am sending you hugs. Michka

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Oh Pam just had the brain met dx too awaiting a consult with the radiation oncologist on Tuesday. I am very upset and scared as it was such a shock. Hope to hear some positive postings about some success stories need something to cling on too right now. Not sure what will be recommended for me as yet but also having to wait to start chemo again until I have had radiation to the brain. I expect that I will start Tykerb/Xeloda soon as possible after radiation. Anyone had experience of this combo and if it worked for them?

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Dear Pam,
I'm sorry to hear about the brain mets. Hopefully, your doctors will do the right treatments and you will end up being like a number of other incredible women on this board living with brain mets.

You have had such a tough go of things this past year.

Truly, I am praying for you and am with you in spirit.

Blessings,
Jane
(Your unusual-autoimmune-disease colleague in Pittsburgh)

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Diane - I had really good luck with xeloda/herceptin then xeloda/tykerb for 3.5 years a few years ago. I was on xeloda/tykerb again most of 2010 and just tykerb nov. 2010 til feb 2011. Obviously it did'nt prevent the brain mets.

Everyone - thanks for your good thoughts & prayers.

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Thanks Pam I needed to hear that about Tykerb/Xeloda. I am thinking of you please keep in touch in how you are going and I will do the same.

XX

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So sorry to hear about the brain mets Pam. I'm sure many other brain mets survivors will chime in with suggestions. Sending prayers and good vibes from Canada...

all the best
caya

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Pam I am so sorry for your DX. Thankyou for the feedback on Tykerb/Xeloda I needed to hear that. Please let me know how you are getting on and I will do the same.

Love & hugs

Diane
x

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Boy Pam !! This latest news is a real bummer !!!!!!!!Talk with some of the other members who had brain mets and find out what they did to treat them.
Can your oncologist give you something to treat and protect the rest of your body while you get radiation?
Please hang in there and keep putting one foot in front of the other. Think about the pleasant things you want to do after you get finished with radiation and recover from the bone surgery. Keep working towards those goals.
As always I am keeping my fingers crossed for you.

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Pam, I am so sorry to hear this. You have really been through so much and now this. I am praying for you and sending you my Best Wishes. Mary L

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Dear Pam! Naturally everyone is upset at this news, but we know that you have an unshakable faith and enough knowledge from real life stories here that this will pass.
You may need to have Gamma Knife or something to finish off the larger met.

Wanted to make sure you are aware of the side effects of the Decadron. Besides being awake like a light bulb going on in the middle of the night, there is the weakness in the legs. You already have less than normal strength in your legs, so if you feel like the rehab isn't working, be aware that is a SE of decadron.

This drug can be muscle wasting, so make sure you get plenty of protein and maybe try the Ensure with muscle building nutrients.

On the plus side - I am so glad you were able to slip in the first dose of Halaven!

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Just wanted to send lots of love your way, fighter girl! ma

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Thanks for the update, Pam. Sending good vibes to both you and Diane.

By the way, Kris left out the founder of this web support group - Christine - who's been NED for many years after being diagnosed with brain mets in her BC recurrence.

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Dear Pam,
I'm so sorry you have received this diagnosis. I'm sending all my best wishes for great success for the WBR and will be keeping you in my prayers. Gentle hugs.

Barb A.

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We will survive it just means a little bit of hard work. I'm on the same page as you but I've already started. So far I've had 6 wbr at a lower dose with a further treatment of VMAT at a very high dose. Spent one night in hospital (vomiting) .

I'm on decadron I've just lowered this dose seems to take two days to kick in on a lowered dose.

I've got 20 rads in total and plan on being like Christine as I'm sure you are to. And we will get there.

Please be strong you have been through alot and your not alone I'm there with you every step of the way.

As i go through this i know i have others with me to give me strength.

Rest is good look after yourself. oooxxx

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Pam,

Sending you a big hug and my prayers for you to beat this fast. Lots of love.

Paty

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Pam,
I don't know what to say - other than what has already been said.

Wrapping you in hugs love and prayers.

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Pam
I must chime in and tell you how sorry I am you are facing this latest setback. It is just not fair at all! You should only be recovering from surgery not something else. At least you were quick to discover the brain mets and start treatment. My prayers and a big kick cancer hug from me!
Elizabeth

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Sorry for your crappy news BUT - There always is hope. Especially with all the gamma knife type treatments out there today so don't give up! My best to you
Joyce

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Pam,

I am keeping you in my thoughts and prayers. Stay strong and looking forward. Lots of brain mets survivors here that you can hang on to their success.

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Dear sweet Pam ~ I just wanted to offer you my love and prayers. I am so sorry this, too, has come your way!

Hugs -Mary Jo

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Sending you my very best wishes.Thanks for keeping us up to date. I love hearing from you even when the news is sad because you have so much to offer. I love that you are able to give others the benefit of your experience even while you grapple with such difficult circumstances yourself.I am hopeful the treatments will go well.
Trish

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Thank you all for your encougements.

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Pam
As I have said before you are a fighter and you
will get through this but you are in my prayers
and healing thoughts every day. You deserve
a break and I only wish you the best.

So many have made it including friends of mine
so push on and take it easy on yourself.
patb

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Dear Pam,

I am so sorry for all you're battling right now. You're in my thoughts and prayers and I'm sending you a big hug.

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Pam, I was so sorry to read your post...sorry i did not get you called back this past week, it was a hard one for me. They have come a long way in the treatment of brain mets....thankful yours were found now....take one day at a time and remember that once you are through with WBR, Halaven is waiting for you to rid your body of all the nasty cells.....you are always in my prayers, you have had a crummy year and you are so deserving of a break....have faith, it is coming! There are so many here who can give you advice/experience with brain mets...just another wonderful part of this group...experience!

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Have you seen this Pam?
http://her2support.org/metastasis/brain-cns
I know nothing about brain mets, but there seems to be several things about brain mets to check out.
In the meantime add me to your list of people who are thinking of you and wishing you the very best.
Chin up !! Hang in there !!!!!!!! Keep putting one foot in front of the other and never give up !!!!!!!!!!!

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Pam,
My heart just sank when I read your news--you just haven't even had time to come up for air. There is not much else I can say that hasn't already been said other then how much I hate this damned disease! (I wanted to scream when I read your post.) I'm so glad you were at least able to get one dose of the Halaven...I've read such positive news on it. I'm sure it will do some serious damage on the nasty cancer cells. Surprise attack! Shelia is right...they have come along way in treating brain mets. You truly are a warrior/fighter and I know you will get through this too. You have alot of brain met survivors here to help you along. I will be keeping you in my thoughts and prayers. Sending you a lots of love & a really big hug!

Chelee

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Pam you are in my thoughts and I'm praying for you. There are great meds for brain metsand many here that can help you with their experiences. Glad you have your hips done so now can start to heal while you knock out the brain mets. Hang in there.

sending love and hugs,~Alice

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Pam,

I am so sorry to hear your latest. Really just takes the wind out of my sails. Dang. I just wish you could get a bit of breathing room here. I am betting you feel like you are lost at sea with one wave after another crashing over you.

There is so much on the brain mets front these days that I am not about to give up on you, so please you stay mentally strong too! I think you said you will begin Haleven once the radiation is complete. That drug has certainly worked wonders for our dear Sheila, and it is my belief it will do something extraordinary for you too! I am sorry you are struggling so right now. I wish I could reach across the web and give you a big hug. Prayers coming.

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dear pam.

i have always loved that smiling photo of you. my heart ached for you when i read your post. i have thought of you every day since reading it. i hope with all my heart that you will find relief from those mets very soon. yours, valerie

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Pam,
I too am thinking of you and hoping that rads will do the trick & that you can continue Halaven,

gentle hugs,Marcia

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Thanks everyone for your continued good wishes and caring - lifts me up.

Today is #7 rad out of 20 , almost half way. Decadron not too bad - had relieved headaches, dizziness. Hanging in there - trying to stuff protein and good cals in to gain some weight. The decadron hasn't had much of an effect on that. More fatigue coming they say. so lots of naps i guess.

Thanks for your encouragements and good thoughts and prayers for this tx to work I kick these mets out of my head.

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Pam,

I truly do admire you. Hope you have a good day.

Amelia

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I am praying and pulling for you, too, Pam. Ceesun

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Pam, sending you strength for the next steps and hugs. Michka

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Pam,I wish you well,I truly think you w/beat this!!! I am lifting you up in prayer lady,you just keep the FAITH,Lots and lots on here pulling for you, Hugs from WV,Joanna J

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Pam, I am praying for you. I really feel you will beat this. Mary L