[abitjaded]

Lotsa stuff, free association ala James Joyce. Just blame dilantin and steroids, and boredom cause I can't go anywhere.

Hey Brenda, I had no idea the Her2 Neu symposium was basically marketing for Tykerb. I had not been on the net before the Cure symposia, too busy trying to get nurses to "walk the dog" (get it? lots of morphine and oxycodone and too little senna and colace) in ICU and recovery. It was so nice to meet you and the others. I sent an email to Cure suggesting an informational symposium at next year's meeting just for us Her2 gals, when we won't be spied on and be advertising focus grops for Glaxo. Sheesh, let us vent please! What's the best way to describe "Hey, you are not dead meat yet, buy our drug and have fun!"

My WBRT consists of 30 GY, 3 per day over 10 days. Radiologist said he guarantees I will not have another brain met. All the info on bcmets and other sites mostly addresses the past guidelines where people were given more than this. (Read them the first day I was home, plus the seminal original research, yikes, scary).

My brain met was on the surface, 1 cm with a 4x5x6 cyst (even my friend from Neurosurgery that I was working for said I did not want to see the CAT or MRI). The surgeon felt he got it. Did finally convince the Rad Onc to show me the after picture, not at all scary, just a couple dings on surface. I have a bit of ataxia on the left left, and that's it.

Anyone who has only had 30, please respond? (Radiologist is out of town this week, duh, no one else can answer my???, "You will have to wait to talk to Dr. X") All the web sites keep lecturing about only getting cyberknife, not WBRT. We had good input. Because of my connections with the University of CO Health Sci (15 yrs Onc, 10 years Psych, one disastrous month in Neurosurgery of all places) we were able to cobble the best minds, but my Oncologist (private, not Univ, Kaiser) stated "I have no choice but to get WBRT" She's kinda a "female-dog on -wheels" if you get my drift. We butt heads often because I know too much, but dilettante, due to my skills (and husband and friends in biology and med fields) at cruising PubMed and I drive her crazy.

Seems like I should be mainlining herceptin (she kinda said I would be getting more) even during the WBRT rather than waiting for PET scan on May 19th, 10 days after end of radiation.

My forehead down to my eyebrows is red and itchy, wondering if my brows will fall out. Radiologist had said not... but why are my brows so red? I am a progressive lens wearer and putting on mascara normally is a challenge since I can't see. Dread trying to draw on eyebrows, I looked like an idiot when I tried to do that after the chemo two years ago. Tied to put on false eyelashes, looked and felt like I had caterpillars on my lids. Make-up is not my strong, or even marginal suit.

Wouldn't worry too much except I always sweat like a pig under a wig. But maybe my scalp isn't even going to sweat after this?

My boys before (especially my poor teenager who is going through the icks right now anyway) was freaky about me just wearing a hat in front of his friends. I am empathizing with him mightily right now with the steroids and zits. If his natural homones are like what they have me on, I can see why he is nuts.

Plus I always forgot about the oven thing and melted the front of the wigs.

Now I'll have a lobster zitty head with a gash from top to behind ear. Trying to be like a mafia king and making sure I get the booth in the back with right side to wall. Who needs hit-men when you got radiation or chemotherapy? Get to keep my hair a week or two more, then dang, bald again. How long does it take the head to heal with this amount so I can even put a wig on?

I'm blond and freckled and cooked to a crisp with the breast radiation. Came off in sheets, itched like a son of a gun and I smeared so much Eucerin and Vaseline to get relief that it took about 10 washes of t shirts with a gallon of detergent to make them wearable again.

Will copy and paste this to bcmets if I just get admitted and can figure out how the mailing list works. Two days and waiting.

If my post is deemed too scary and inappropriate again, please report it and have webmaster remove.

Carla