Statistics and herceptin

I watched the movie tonight and thought it was great.  I've also read Robert Bazell's book, HER2, which the movie was based on.  But I had a question: in the movie, there was a line that stated something like this  "a third of the women who have breast cancer have a very aggressive form of it and they will die from it."  Is this true?  I know HER2+ women have an increased risk of recurrence and a reduced overall survival rate, but I didn't think all HER2+ women were absolutely doomed without herceptin.  Was this just dramatic license?  Also in the movie, they said that not all women respond to herceptin.  Is there a way to tell who is, who isn't?

The way Henny described it is the way I was told at DX too. There was a commercial   in the middle of the movie that talked about a test that our doctors can give us to see if Herceptin is responsive. I am going to ask my Oco about it tomorrow.

I do believe that woman who had her2 BC before Herceptin, were a a huge risk of death. Because it is so fast growing and not always as responsive to chemo. BUt remember, they did not even test for the her2 gene  until like.. somewhere in the 90's. Remember in the movie/book the woman who, at the end, was given 4 months to live when the cancer came back.. and she was asking if there was ANYTHING she could try.. and her Onco told her that "if" she tested positive for her2 she could get in a third phase trial.. and she said... how do I know if I am Her2.. and  he said "we'll test you". Well, this was 4 years AFTER her original dx of BC., about 1996ish...

We are living in a blessed time to have this type of cancer.

Gods Love,

Laura

TNT, I wondered about that same line when I heard it. I think it must be an oversimplification. Everything I've read and what my oncologist told me is that for my <1 cm, stage I, 100% HER2+ cancer, with lumpectomy, radiation and no chemo,  I have a less than 20% chance of recurrance and an about 10% chance of dying.

Perhaps what was really true is that if HER2+ cancer got past a certain point like stage IV, it would be fatal without Herceptin. Maybe they simplified it. I also thought that HER2+ was around 25% of cancers rather than 1/3. Or possibly the statement was what they though at the time that Herceptin was being developed. Since HER2+ testing was pretty new at the time, they wouldn't have had as much statistics developed on i  

I  also noticed that they said several times that Herceptin doesn't have any side effects which isn't quite true. But since it has much less side effects than chemo and they were just starting to test it, that may have been what they thought then. 

It was a very interesting movie and I'm glad I saw it.  If there were minor inaccuracies or simplifications, it still is great to have a movie out there letting people know that research does sometimes produce breakthroughs. I'm grateful to Dr. Slamon for persevering and to Revlon for helping to fund his research.

Liz, that link does not give me anything except 2 links to videos.   Maybe it is my Macintosh - and/or fire wall settings.   

Lefty-

you have to chose an area of the forum you want to go into such as click on "message boards" and you get to see the topics in the forum and you chose which one you want. 

I clicked on "message boards" here's the link.  http://her2support.org/vbulletin/, if you're still having trouble let me know.  The members on the her2 forum are very knowldegable about the various stages of bc that is her2+++.

Liz, thanks for the link - it worked great.   

 Pug:  congrats - dancing with NED  ( no eveidence of disease ) is super.   

I had my penultimate ( next to last ) Taxol and Herceptin  today.   Konked out for 4 hours and doing prob will be up till all hours due to the steroids.    Herceptin for almost another year every 3 weeks is next, with surgery consult on Nov 6.   

I had # 11 of 12 weekly Taxol and Herceptin and fuzz on my head is very much there.  Some had said to keep massaging your head to make it grow faster.   

Question:   I have surgery consult on Nov 6.   After # 12 of taxol and herceptin I am to have only Herceptin every 3 weeks.  Do or did you schedule it, even if surgery is going happen or wait till AFTER surgery to do it.  Does one coordinate it with surgeon or onco since it is not "chemo" ???

Have a great weekend. Enjoy, smile, laugh - Hugs and Blessings,  Nancy 

Laura, I had 4 Dose Dense A/C before the the combination and hair was GONE in 15 days.   

A funny:  Chemo friend Nadine finished chemo 2 weeks ago and she has no hair on head, but at her surgical consult today, she had to raise her ams for exam and discovered she has underarm hair but nothing on her head.    

BethNY you are so right about slow hair growth on Herceptin.  I finished chemo on March 13th and I'm appalled at how slowly my hair is growing.  I'm on Herceptin until early January and I can't wait.  I had ovarian cancer 6 years ago, finishing chemo Mar 6th/03 and I know that at this point I had way more hair.  That's been my biggest complaint.

I also have one eyebrow hair on the left, 2 on the right and refuse to pluck.   2 eyelashes on each side. If I used mascara, it would last a year or more !!

Since I will be on Herceptin every 3 weeks until next June or July, I expect that hair is not going to be my "crowning glory".  There is more and more white fuzz - and only one more taxol and herceptin to go.  Just think of all the money saved on hair products and hair cuts and the time to groom it.   In the shower, out, no shaving pits or legs, no wirey chin hairs,  toss on a wig or head cover, ready to go after taking more time deciding what to wear.    

If you are near Sally Beauty Supply, they have eyebrow stencils for $ 2.99.  I got them but have not tried yet.  Sephora has them for much more and a whole kit with pencils, gel, etc.   Both are online, but shipping is pretty high in my opinion.   I rad that if you put loose powder first, pencil sticks better -again I have not tried it yet.   And mascara also sticks better than pencil.  

In a way this is like playing dress up as a kid -- play around and hope you dont end up looking like the painted lady !!!    HUGS, Have a great weekend,   Nancy 

Oh dear, that's not good news about the slow hair growth with Herceptin.  Does this mean I'll be close to hairless until the end of 09?  Good grief. 

bluedasher, I read the book by Robert Bazell and that line isn't in it anywhere, so I figured it's just dramatic license.  The stats my doc gave me are about the same as everyone else is quoting with a similar stage and diagnosis.

Love to all,

Teena 

I'd love to have a head full of curls...I'll keep that positive thought!

Just did a quick scan of the posts but wanted to add my two cents to this topic.  I would crawl on my hands and knees if I had to in order to get herceptin.  I was one of the very lucky kids who received it as part of the early-bc herceptin trials going on at Dana Farber.  I had it with navelbine, then my mastectomy, then had A/C, then rads, then finished up the year of herceptin.  I also had a second mastectomy in the process (that one voluntary).    Then I had reconstruction.  This December will be 5 years since I was diagnosed.  I am currently on arimidex as I was triple positive.   I had no side effects to speak of when I was on the final stretch of herceptin.  There is nothing I would change in the entire process.  I did everything I could to increase my chances at survival.  My bc was aggressive, and so we went with aggressive treatment.

As far as I am concerned, I am cured.  I had angels on my shoulders throughout this process and it was definitely an angel who led me to Dana Farber and the trials where I was guaranteed herceptin as part of the trial.

Thank you angels, and GO HERCEPTIN!

Trisha

Laura, that's a new avatar for you, isn't it?  Looking good, girl!

LOL... yes, it is a new avatar... it is me in the wig I wear all the time now. Looks good for winter. I have about 25% hair...LOL.. on my head... so when I go out, that is my wig... I thought I should post how I look now..

I WISH it was my hair.. but nope... I have 4 more chemos ( taxol) and then herceptin till next yr.. so that wig may be with me awhile...:)

I have never looked good in the wraps... so I wear a beenie around the house ( it is cold here) and my wig when I leave the house...:)

Laura