Topic: Statistics and herceptin

Hi Diana,

Yes, you are right. There are No overall or disease free survival stats out there yet.You are correct about Herceptin, only being given to Stage IV ladies initally. I was dxed with stage IIIC  IDC May 05. I  started Herceptin in Oct 05 and have yearly PETs and am absolutley fine.

This is still a new and scary time for you, but it does get so much easier. My advice is try not not get  tied up with the staging, and nodes thing . These are simply annotated for treatment purposes.

Be careful about reading too much as MOST of the stuff out there is outdated and therefore not applicable.

It's a wild ride,but you'll be OK.

Hey Diana,

I'm a research junkie, so I understand your need to find out what the stats say.  I am frustrated too that because Herceptin is still so new there aren't any 5 yr studies out there for us to read up on!  I did hear from a fellow ER/PR- HER-2 + gal that her onc. gave her some really encouraging news about Herceptin.  He told her that researchers are trying to mount a study about recurrence rates among Herceptin users - and they are having trouble getting enough participants.  The reason is that there are TOO FEW patients who've had a recurrence after taking Herceptin for a year.  That made my day.  Let's hope we are all among the majority who can't take part in that study!!!

Lisa 

I have heard about this vaccine too.... and wow does it ever sound promising.  Herceptin is  truely a miracle drug. 

Hi ladies.....

    Well, not sure if I can help you with the stats, but I can tell you my story in a quick recap...I was dx in May of 2000, very aggressive trip ++++++, only 38 at the time. I was put into the herc. trial after my chemo and raditation. I was put into the year of herc instead of the 6 monthers. After my yr,. of herc. I then took Tamox. I did great for a long time, but just before I finished my 5 yrs of Tamox. I was hit with the recurrance of b/c to the lungs. That was in 2006. Skipping over all of the details of all the different chemos I had to try, I was started back on Herc immediately at my recur. I had to try a few chemo, with the herc before one kicked in  but after 2yrs of treatment with chemo and herc. I was able to come off of the chemo and only get the herc. (which I get every 3 weeks, and I also get a lupron shot once a month). It's been almost a year now with only the herc. and so far things are looking good. I will be on hercp. probably for the rest of my life, but if thats what it takes...thats the way it has to be. In all I have just past my 8 yr mark of original dx with b/c., and almost  up to my 3 yr. mark with my recur. Not too bad with such an aggressive b/c. I hope you all understand what I tried to explain, I started with the hercptin as a trial, but I wish I had never come off of it from the beginning and MAYBE I wouldn't have had the recur to my lungs. But thats in the past, I have put all my faith in Hercptin, I truly believe it has made all the difference in me still being here. Good luck to all of you wonderful ladies on Hercptin, stay on it as long as your heart can handle it. Herceptin wasn't around when a dear friend was dx 15 yrs ago, she is now gone, but each year another drug seems to come around, lets hope the FINAL one is just around the corner for all of us...Bless you sisters...Big Hugs to all KLynn

Hey Diana,

    I hear you on the adding yrs to your life with your children !!!!!! My two boys were only 15 and 12 at the time I was dx.  We had just lost a good friend (who left 4 young children) and my boys  grandmother was also fighting b/c. My boys were scared to death and very angry. They are now 23 and 20 yr old young men. It would still be hard to leave but  not nearly as hard on me to think about leaving them now. So you keep on fighting, and when you are sending your daughter off to college you will look back and say "herceptin really rocks".....Good luck KLynn

I asked my onc last year about doing herceptin longer than 1 yr. He said that he would be hard pressed to find someone in Portland who would give it for more than a year for stage 2.

Hmmmm

Henny 

Yeah, cancer sucks , doesn't it? I'm greatly encouraged by the posts about Herceptin. I'm gong to start it with taxol on Sept. 16. The insurance companies  are all bout the money, but this is our life! Is it true that there is another drug that exists that would replace taxol and doesn't have the adverse allergic effects? I heard it's more expensive, so the insurance companies don't want "in-network" oncs to use it.

magellan the drug is called abraxane... and you're right.  Oncologists are a lot LESS likely to give it.

I finished Herceptin in May and had 36 weekly treatments with 2 breaks after about 6 or 7 weeks.  I asked my Onco for more treatments but he said there is no proof that any more treatments would help.  I still wish I could have had more.  But just had scans and all were clear!

Beth, sorry, I'm sometimes technologically challenged! Try Abstract 6589 (which is an estimation) if you can pull it up.

Estimation of the epidemiological effect of trastuzumab over 10 years in 5 European countries.

AlaskaAngel

http://www.asco.org:80/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=34554

I don't think it is US, folks. Somebody is making this tougher than it should be. Normally I can just post the link. Anyway, click on the link in my message above that brings you to the page that says "page not found". Scroll down and select "abstracts". Scroll down and select "2008 annual meeting abstracts" (Do not select the breast cancer choice.) On the drop-down menu just before "go", get it to drop down and select "abstract number". Enter the number "6589" in the search box.

puff puff puff

-AlaskaAngel

Diana,

I am new here...what is this vaccine of which you speak?....

I probably will not be able to take herceptin because I was diagnosed with cardiomyopathy 13 years ago.......so I have been searching online for what else is out there that would do the job without heart toxicity.......

Thank you,

Beth

Hi Bethwvu,

Here are some links with a bit of info for the vaccine:

http://www.springerlink.com/content/tj451863035u3132/

http://cat.inist.fr/?aModele=afficheN&cpsidt=20145290

http://jco.ascopubs.org/cgi/content/abstract/23/30/7536

If you google E75 Her2+, you should be able to find additional information.  Looks very promising to me and I am ready to get the vaccine!

God bless! 

Me too, have a hard time sleeping.  Had a great day today, now I am a bit sad. 

As far as the vaccine, not sure.  My onc said it was in Phase 3 and everything looks promising, but no estimation for how soon it will be out.  I am praying sooner rather than later.  Either way the dr. said I will be able to get it.  I just want to watch my children grow up!   

Hi Estepp,

I just wanted to send a big "good luck" hug to you for tomorrow when you begin your taxol and herceptin.  You can do it and you will be fine!!!  Time will fly by and you will have all the tx behind you before you know it. Last November, I was exactly where you are now, and here I am almost a year later, with hair and just 3 more Herceptin tx to go to finish up my year-- yay!  I was a bit tired during the taxol but worked every day except treatment days and made it through fine, thanks to the nice ladies here on this board!  The Herceptin is our miracle med and will keep us going on forever, like the Energizer Bunny!  Take care and pamper yourself and get lots of rest during your treatment!  My best to you!

Mary Jo