Looking for others who have had WBRT 30 Gy

abitjaded · 05-05-2008, 02:33 PM

Hopefully moved to other website

AlaskaAngel · 05-05-2008, 03:17 PM

Hello abitjaded,

I've not had WBRT (only breast rads), but welcome to a place where HER2's hang out and debate and try to find answers. The newcomers club generally has mostly those in it who are either about to experience some therapy or just starting, so your description may be a tad unsettling to a fair number of those who come here..... but don't go away... just post directly to the main forum, where there are more of those who have possibly had WBRT...

And please don't let this scare the poo out of you, but the website for all types of bc who have mets may also have more info on WBRT simply because more of them have had that therapy.... That site is bcmets.org

I'm glad you found your way here. Let's hope it turns your luck around!

AlaskaAngel

hutchibk · 05-05-2008, 04:25 PM

Hi Abitjaded - It was nice to meet you in Denver this weekend... Definitely put up a post here looking for others who have had WBR - there is a lot of info to be had from many of our ladies, some in the last 6-8 months who have had WBR and some have had WBR going back a few years.

Join in and start getting your info! Also, as Alaska says, check in the BCmets.org website as well.

Brenda

Bill · 05-05-2008, 05:07 PM

Hi abitjaded, my wife, Nicola had WBR 28 treatments, in July '07. If you need info. maybe I can help. Best wishes, Bill

alw · 05-05-2008, 06:08 PM

My sister, Laura, had WBR in Jan/Feb of 2007. Let me know if she or I can answer any questions.

Amy

abitjaded · 05-06-2008, 10:38 AM

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

hutchibk · 05-06-2008, 12:21 PM

I didn't know what the focus group was for, but since it came with a monetary stipend for participating, I assumed it had to do with gathering some marketing data for a pharma co. I didn't know it would be for Tykerb, either, but I respect their process - they are hoping to learn how best to get the word out to more Her2 patients about another option in our toolbox, one that specifically can hopefully help the increasing number of patients who eventually experience brain mets...

Glad you are here Carla. You will find an amazing amount of info and support here. Just keep asking!

abitjaded · 05-06-2008, 01:21 PM

Yeah, I just like to complain. I know the poor drug companies need feedback. Especially in the light of Oncologists opinions like mine who say, when asked: Remember to read with a gruff Brooklyn accent, spoken out of the side of your mouth: "Well, I've heard it ain't all it's cracked up to be." The women at the meeting obviously put paid to that comment.

I actually love focus marketing groups. There is one near our house that is always trying to recruit my sons. There is a great lady who calls and always prompts my sons for the right answers so they can participate and get big bucks. Usually junk food testing (they usually fail, cause we don't eat it) but this woman gets them in.

Plus, having worked under Fed and State Grants as a FED and State employee we never got any perks (no Christmas party, no comp lunches, no nothing). The drug companies always had some slush funds so we could at least go out to dinner at Scientific meetings. Or attend really nice parties at interesting places. They have always kept a lot of my science friends in funds during dry periods in lost grants.

Carla

hutchibk · 05-07-2008, 06:23 PM

All I know is that Tykerb/Xeloda has been the magic bullet so far for my brain mets (and for JulieRene for her liver mets)... and it is the easiest regimen I have been on so far. Everyone is different and some have good response when others don't, but that's why we (and OUR DOCS!) need to stay open minded to all options... and many folks have had complete response with Herceptin that I was unable to accomplish, so I am thankful for T/X! Thankful beyond words!

abitjaded · 05-08-2008, 10:19 AM

Hey Brenda,

I hope you and others in Denver know about this organization:

http://www.dpfcf.org/pages/home.html

When I first got treated they gave me the only fun, affordable outings we got.

Waiting list is 6-8 weeks. Waiting again to get on.

I hope after all this I can write an experience for all to read. All the Internet stuff for WBRT is out of date and way too scary. So far my experience has been good. In a month or two I would love to post something, it would be amazingly reassuring to all, I think.

We of Her2Neu are just so new, the Docs are still at a loss.

Carla