Worst News Ever!!!! - Page 2

jhandley · 04-13-2006, 05:32 PM

Hi Lyn

Sorry to hear your news. Thinking and praying for you. Hope you get some good advice and help. If you would like a visit let me know.

Jackie (Victoria)

Julie2 · 04-13-2006, 05:54 PM

Lyn,

Please try to get Lapatinib. It should work for CNS mets.

Julie

Lyn · 04-13-2006, 06:14 PM

Thank you all so much, and yes I Doooooooo! need all the information you can get your hands on, and well all the love and prayers will get me, and us, through this next stage, I did say to my onc I wanted to be top dog, so I must be if this new Angel, knows me, especially since I hadn't met him before and he already knows me from Boris's File, and let's face it Boris is only 40 and he needs to learn a lot more about us and this dispicable, sounds like daffy duck, disease. Love to you all, it is a worry living with a time bomb, and that is what it is, we still have time. So I am faxing the info to Boris, that you lovely ladies have sent already.

Love & Hugs Lyn

Lyn · 04-13-2006, 06:26 PM

Hi, Lani, your server won't accept anything from me, but my email address is alexandere666@iprimus.com.au the problem with my address is the extra "e" on alexandere

Cathya · 04-13-2006, 06:51 PM

What about trying a loading dose of herceptin now while you are researching other ideas? Your her2 levels must be very high given everything.

Cathy

sherri · 04-13-2006, 07:09 PM

Dear Lyn,

We admire and salute your strong will. You are and will be in my thoughts and prayers until I get the good news from you,

Love and hug,

Sue2001 · 04-13-2006, 07:26 PM

Dear Lyn,

Please know that I am thinking of you, sending you warm healing thoughts, and including you in my prayers. I am fairly new to this site but I have enjoyed reading your posts. Keep us posted on how you are doing and what you and your doctors decide is the best course of action. Please take care of yourself and I wish you the very best. Hugs, Sue

Lyn · 04-13-2006, 07:41 PM

And of course, Lolly and Cathy, what can I say? I will ring Boris and make sure he gets my faxes, dn't you love modern technology. I just had the shock of my life, my left foot went numb while I was sittting here but it was circulation, I have to use them or loose them.

Love & Hugs Lyn

Lolly · 04-13-2006, 09:29 PM

Lyn, links to some info that may give you some ideas:

Clinical Trials on Spinal Tumors:
http://clinicaltrials.gov/search/ter...pinal%20Tumors

CyberKnife Spinal Radiosurgery:
http://www.cksociety.org/PatientInfo...diosurgery.asp

NINDS Brain and Spinal Tumors Information Page
http://www.ninds.nih.gov/disorders/b...inaltumors.htm

chrislmelb · 04-13-2006, 10:49 PM

Lyn i'll be thinking of you up in QLD. Thank goodness you seem to have some pull up there. Lots of positive thoughts your way.

Christine

StephN · 04-14-2006, 12:24 AM

Wanted to get back to you - just swamped with all kinds of new things including getting a new bed today.
This news makes me a little sad as you have gone to such lengths to joust with this beast. Not that the match is by a far cry over - just that the horse is letting you down a little right now.
We leave for my hometown tomorrow or I would try to come up with a little something in the way of possiblities, but nothing off the top of my poor overworked head that has not already been said by the other rough and ready crew here.
You have all my best thoughts and prayers that the new chap will be able to help you out.

Roz · 04-14-2006, 01:53 AM

Lyn, So sorry to hear your news.

There are trials of Lapanitib in Sydney, thru Mater Misrecordia Hospital in Crows Nest, or North Sydney (not totally sure of the address). I'm sure your onc will know

Lyn · 04-14-2006, 03:23 AM

Thanks Roz and Chris my Aussie sisters, and thanks to all of you around the world for the prayers and support, yes I will beat this again, on TV they showed a lady 104, yes 104 doing volanteer work at one of the hospitals, and she looked and acted about 70 years old, I would like that to be me.

Love Hugs Lyn

emmasmom · 04-14-2006, 09:36 AM

Lyn, please know you are in my thoughts and prayers.Love, Lisa

karenann · 04-14-2006, 10:52 AM

Lyn,

Keep the strength and believe! I know you will beat this.

Love and hugs,

Karen

helenh · 04-14-2006, 02:39 PM

Lyn,

You are constantly in my thoughts and prayers, please keep strong and positive. I pray also for your doctors and specialists to find the guidance they will need to steer you through.

Love and Hugs back

Helen

sassy · 04-14-2006, 04:57 PM

Lyn,

Keeping you in my prayers.

Sassy
________
Nexium attorney

Sandy H · 04-14-2006, 06:37 PM

Lyn, you are a pro and so put your armour on and get started. On second thought I don't think you ever too it off. The fellow that came to your rescue is your angel. He will get the ball rowing for you. We are all here to support you as you have supported us in the past and will continue to do so. I will ask my Christian friends to pray for you along with Al and Linda. God does answer prayers maybe, not the way we want but he does answer. Take advantage of the offer here for help with the research-you need to save your energy to heal. Be sure to keep us posted. Sending you a big hug, Sandy

Lyn · 04-14-2006, 08:18 PM

Thank you all very much, and I have found out a bit of information that my reflexes a low or not there, is a good sign and also if bladder not working that is a problem and I don't have a problem at the moment when I go it is like I have had a fluid tablet, when measured at thd hospital the capacity that didn't come out was onlu 15mls and nothing to worry about as it was so small. So it looks like the magic on this site is working. My low blood pressure is strange so maybe it isn't pumping this disease, but I did get extra tumours in the neck whicb are burrowing into the spinal cord in between MRI's first last Friday and the other Monday or Tuesday I can't remember, as one on the lower spine which they weren 't worried about. Very daunting but at the same time the other is encouraging.

Love & hugs to you all.

snoopy · 04-15-2006, 11:38 AM

Thinking of you and your family Lyn.