Great Promo for our site!

Lisa · 10-20-2005, 02:05 PM

Today at chemo, I received a big pink packet of goodies from Genentech: stationery, BC stamps, a pen, a ribbon-shaped cookie and a magnetic poem. The cover letter was written to all Her-2 patients. Part of the copy read:

"As you may know, words of encouragement can be very meaningful to breast cancer patients fighting their disease. You may want to consider sharing your story with other HER2-positive metastatic breast cancer patients on www.HER2support.org -- a site designed by those and for those with HER2-positive metastataic breast cancer. There you'll find resources, news, and a community of professionals, volunteers, and fellow survivors."

WOW! If Genentech is supplying these packets to everyone on Herceptin, then we can expect our site to blossom! VEry exciting.

Love and light,

Lisa

StephN · 10-20-2005, 02:20 PM

Gee, Lisa -
I sure hope I get one of those "goodie bags" when I go in next Tuesday for my herceptin! BC stamps, even ... I have to purchase those. Even put them on my bills.

We do have some new members lately, so maybe a result of that mode of getting word out.

al from Canada · 10-20-2005, 02:29 PM

WOW, way-to-go Joe!!

That sure raises to site's profile a couple notches....not that it didn't need it!

Al

al from Canada · 10-20-2005, 02:30 PM

"not that it needed it"

I always get confused with the negatives...
Al

RhondaH · 10-20-2005, 03:58 PM

They know a good thing when there is one

Keep up the good work Joe and Christine!!!!

Rhonda Hoffman

Joe · 10-20-2005, 04:26 PM

Lisa, Sounds GREAT!!! I am curious who put these packages together, was the reference to our group on a Genentech letterhead?

Joe

Sandy H · 10-20-2005, 05:34 PM

I will let you know if I get one tomorrow when I go in for my Herceptin. Sounds great to me. Sandy

Lolly · 10-20-2005, 09:55 PM

I'm definitely going to ask about it when I go in next week! How neat

<3,
Lolly

jo50 · 10-21-2005, 07:00 AM

I wonder if I will get this - did you get it at home? Cute thought, bot that I exactly need the contents! Not sure if it filters through to the "patient" - e.g. I didn't get the letter from the trial people when word came that we should now be getting Herceptin (I was in arm that didn't get it originally). I found it in my chart (which I go through every few weeks) and asked for a copy from the chemo nurses. I was getting the Herceptin I hasten to add, which is the important thing, but I thought it important to have the letter too, especially since it was addressed to "trial participant".

Lisa · 10-21-2005, 09:46 AM

I was just sitting in Chemo when one of the nurses walked up with this very nice Velcro sealed packet. It was most definitely from Genentech with a letter on their letterhead addressed "Dear Patient." No signature, only "Sincerely, Genentech BioOncology"

The only thing "local" about it was a big, fat, pink ribbon shaped cookie, made locally. My assumption is that Genentech is providing these to all Herceptin patients and that the local rep provided the cookie. But who knows?

Love and light,

Lisa

jener8er · 10-21-2005, 10:21 AM

I didn't get a cookie! But I did get a nice pack from Genentech that had a nice pink baseball cap with "Support HER" on the front, a pink pen, a pair of pink socks (!) and a lot of information about how Herceptin works. I read through it and tossed most of it, but I think the brochure I read also had a reference to this site. I didn't pay that much attention as I already think this is a GREAT site!! When I go back, I'm gonna ask for my cookie!

Jen

Sheila · 10-21-2005, 01:22 PM

Lisa
My next Herceptin is on Halloween...wonder if I'll have to say trick or treat to get one??????

Hugs
Sheila

Lisa · 10-23-2005, 09:51 PM

Hey, I didn't get a hat or socks! Only a yummy cookie that didn't help my diet at all. Oh, well...

Love and light,

Lisa

TriciaK · 10-24-2005, 12:57 PM

I didn't get a cookie, a hat or sox!! But the promo for our site is fabulous and I hope a lot of people are as thrilled with learning about it as I was (and am)! I guess the package comes from Genentech but the extras are local. Great idea, anyhow, and especially getting the word out about this site. Hugs, Tricia

StephN · 10-26-2005, 11:50 PM

From GENENTECH, yet!!!

I also got the pink "patient packet" with the "Dear patient" letter when I went for my infusion yesterday. A cool blanket too! ;o)

When they mention this site in the letter it says:
"HER2support.org -- a site designed by those and for those with HER2-positive metastatic breast cancer."

Read that carefully. This site is BY NO MEANS only for those with metastatic breast cancer. I will give them that is is PARTLY designed by someone who is metastatic - that is Christine, but Joe and his techs don't have cancer!!
It is almost as if Genentech AGREES with Ms. Ethridge that we are not long for this world!

Here again this is a packet for supposedly mostly NEW patients and this may scare them away from the site as it is NOT an accurate representation.

They need to reword this letter next time they reprint. I just don't quite know who to complain to - or if it is really MY place to do that.
But, it should be plainly stated this site is for any cancer patient, care giver, supporter, etc and not only HER2 as we talk about other things such as nutrition and studies that many benefit all sorts of breast cancers.

My 2 cents.

And Melissa Ethridge can promote pot if she wants, but I sure didn't need it and I had a hell of a lot more chemo than she ever dreamed of!!
I think Oprah needs to do a show with all stage IV survivors as a counterpoint to Ms. Ethridge's representation of US.

sarah · 10-27-2005, 06:30 AM

I think it's great that word is getting out to HER2 people about your wonderful site. I wouldn't worry too much about the exact wording - don't put them off doing anything. anyone with HER2 will check it out whether or not they're metatastic.
Your site is great and so appreciated and helpful.
all the best,
sarah

Sandy H · 10-27-2005, 07:49 AM

I will ask about it tomorrow as I forgot to ask last time. I bet if they got them they ran out in a hurry. My oncology department nurse told me they are seeing 8 new patients a week. I am in a rural area and this is the only oncology within 75 to 100 miles that offers both chemo and radiation. I don't know how many are getting herceptin but seems there are quite a few that I talk to each week. It really concerns me if they are seeing 8 new patients a week. Most days there are people waiting for a chair and there are 15 chairs which I know is not much compared to places in the big cities but for Maine where there is no research centers and very limited oncologists that is a lot. The nurses here really earn their money and still they are very caring, compassionate and do a great job for us patients. Guess, that is my input for today. hugs, Sandy

Lisa · 10-27-2005, 08:56 AM

Steph,

Maybe I've been in this boat too long, but the wording of the letter didn't bother me. As I just re-read it, it still didn't. Maybe because I was too foused on my cookie and poem. Since Herceptin was just started with original bc patients, I'll bet the vast majority of women who received this ARE Her2-pos metastatic bc survivors.

And, I'm afraid most people don't read cover letters that closely.

Love and light,

Lisa

StephN · 10-27-2005, 10:37 AM

Maybe it is my years as a proofreader (of law books yet) that makes me notice things that others may not.

BUT - Since thousands of new patients are now getting Herceptin as ADJUVENT therapy, this was my concern. My Genenteck rep called them "New Patient packets." I have never gotten one before this and I have been on Herceptin for 4 years.

So, it seems to me it is more for the newbies, and I felt the letter should not scare those newly diagnosed. Look at some of the questions we have been getting from frightened newly diagnosed gals who want to know if it is basically a "given" that they will progress to stage IV. Where do they get that idea??
That wording in the letter is not comforting to those with such questions.

Now you know where my thoughts sprang from.

RhondaH · 10-27-2005, 11:12 AM

I TOO used to be a proofreader (of medical textbooks) and I (like you) am VERY analytical and I TOO would probably have freaked out, but that's why I ask LOTS of questions and like clarification. Yes, I'm Stage 1 and doing 1 year of Herceptin. Maybe they could hire us as proofreaders

Rhonda Hoffman