Linda..GabeNAbbysMom

MAJW

Linda....you'll always have me and the pinks in your corner....ALWAYS!

I'll share what I can about my brain rads.in March.....I had hair when I had rads...so of course it started falling out in clumps so I had my head basically shaved afterwards...so I had zero burning of my head....just use Johnson's Baby Head to toe shampoo...I just rub it on my bald head and rinse it off...! My head was never sore at all... But, what I did notice after the 10 rads were over that my cheek bones, I have high one's, all of a sudden turned "tan" ...still are! I guess it's the areas that are radiated...I had 3 small spots....honestly the only SE I had was the overwhelming fatigue, that I was warned about,... set in about a week after I was done... I had two really bad days where I was barely able to function...plus my port was put in the same day as my last rads....I think that had some effect on the fatigue....it only took me about 2-3 weeks until I found my energy again..just in time to start chemo again! The rads like any other I've had, only lasts 3-5 minutes, and setting you up about the same..I thought I wouldn't be able to stand the mask, but I really surprised myself..I just kept telling myself, I can do anything for 3-5 minutes!.. To be honest, I had to let my mind go else where once they put the mask on and bolted it to the table....I prayed...for strength to get through each treatment..it worked for me!


Linda, I know I sound like a broken record saying this again and i swear i'm not preaching, but PLEASE ask your oncologist about Avastin.... it's been the game changer for me...my tumor markers were 98 in Feb. WAY up from the last one was done...that's what caused my onco to order the PET and CAT scans, thus discovering the brain mets...since the FDA pulled it in Jan. for stage IV bc, he went directly to the manufacturer and secured it for me at no cost to us..it is soooo expensive..insurance won't cover it due to the FDA pulling it.....they replace what I get to my cancer center...I have the Avastin+Carboplatin...when my markers were done last month they were 34, considered in the normal range and now chemo is every 3 weeks instead of every 2 weeks....please ask about it...I only keep harping on this because I care so much about your well being...Please forgive me if I am over stepping my bounds....Avastin cuts off the blood supply to the tumors...rads does the "brain work"...I hate so much you are having to go through this but you can do it! Remember we are stronger than we know...we just dig deep for it! I have asked myself how deep I have to dig..to China". ???? lol but it's there! You'll find it in the faces of your husband and your precious children...

I wish you the very best and will continue to pray for you....again, also if you want my phone number I will be happy to give it..sometimes as with this board, it helps to talk to one who has been there done that..

My very best to you,
Hugs, Nancy

New Flower

Nancy it is a very moving post
Nancy it is a very moving post. Thank you for being our cheerleader - everything is possible and yes we are tough , much strongerthan we can imagine and very brave. Currently , Genentech/Roche is conducting a clinical study to predict patient's response to Avastin Bevacizumab. The goal is to develop a genetic test, which can identify a group of patients,who could benefit from this drug. The hope is to put it back for breast cancer. Please PM me your email I will forward you this info.
Linda,
Good luck with radiation. I hope you will have minimal side effects.
Hugs

VickiSam

New Flower said:

Nancy it is a very moving post
Nancy it is a very moving post. Thank you for being our cheerleader - everything is possible and yes we are tough , much strongerthan we can imagine and very brave. Currently , Genentech/Roche is conducting a clinical study to predict patient's response to Avastin Bevacizumab. The goal is to develop a genetic test, which can identify a group of patients,who could benefit from this drug. The hope is to put it back for breast cancer. Please PM me your email I will forward you this info.
Linda,
Good luck with radiation. I hope you will have minimal side effects.
Hugs

.. your post, Nancy is proof of the love,
support and encouragement our Network of Sisterhood here on ACS site --!

Thank you, Nancy!

MAJW

VickiSam said:

.. your post, Nancy is proof of the love,
support and encouragement our Network of Sisterhood here on ACS site --!

Thank you, Nancy!

Bumping up ..
Bumping this up in hopes that Linda sees it....

Gabe N Abby Mom

Nancy, thank you! I have
Nancy, thank you! I have about 1/2 inch of hair and I did start wondering about how your hair fell out today and planned to send you a PM to ask about your experience with it. How many treatments did you have when it started falling out?

And I am planning to talk with my onc about the avastin. I don't have high hopes for him being able to do it though...I have Kaiser and they aren't very good about doing things out of the guidelines. But, I have a list of things I'm keeping in back pocket as possible future alternatives, and avastin is one of them.

Thank you for all the prayers and support. This is truly an amazing and special place filled with people like you...people I really want to know and spend time with.

Hugs,

Linda