Statistics and herceptin
From what I understand, the statistics that are currently given are old and inaccurate now that Herceptin is used in early stage (1-3) her2+ cancers. Is this what everyone else is getting too? My onc said that after 2004 herceptin was starting to be given, but it wasn't really until 2006 that it became the norm for herceptin to be used widely for stage 1-3ers. So if this is true, there are no accurate 5 yr statistics yet, right?
I know not to trust statistics, because I blew mine out of the water (I was told a 2% chance of ever having breast cancer in my life and that 2% was because I was female!). I am just curious. I guess I am very scared because I show no evidence of disease in June, and have another PET scan in October and am just stressed.
Comments
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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Be careful about reading too much as MOST of the stuff out there is outdated and therefore not applicable.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.
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Given the agressive nature of Her2 disease. 3 years of No Evidence of the Disease is considered very good.
Other cancer such as prostate can stay in remission up to 10 years.
If the disease does not come back in 5 years, most people would consider disease free.
Herceptin (antibody treatment) was FDA approved back in 1998.
The success of the two massive Clinic Trial let the medical people to believe that
Herceptin is very effective.
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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
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Lisa ~ I pray that is true!! My onc also told me that the vaccine that is in its clincal phase 3 will be given to me once it is approved for us Her2+ gals and it looks like the combo could be our cure!!! I told him to sign me up, I am ready. The lead researcher on the vaccine is close to my onc, her mother is one of my onc's patients. I pray for the day we can say there is a cure for not just our type of breast cancer, but for all breast cancer!
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I have heard about this vaccine too.... and wow does it ever sound promising. Herceptin is truely a miracle drug.
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hey, i'd be willing to enter that study. i am one of the few that didn't even make the end of herceptin treatment when mets showed up.
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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
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Thank you KLynn for sharing your story. I am going to ask about continuing the herceptin past the 1 yr mark since my her2 was ++++++++++. When I hear stories like yours, I add whatever the years are to my youngest age. 8 yrs plus her 2 yrs, she will be 10 yrs old. I find comfort in that. I never miss an opportunity to tell my kids, 'do you know how much mommy loves you???'
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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
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I asked my Onco last week if I could possibly stay on Herceptin longer than one year.. like the 18 months I hear so much about. She said Insurance companies will not pay for over 12 months right now ( unless you are Stage IV). I thought that was crapola... she told me that if that changes before my year is up... she will have me on it the 18 months or as long as the medical community thinks it is of benefit...
Gods Love,
Laura
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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
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With the risk to the left ventricle, without having mets, one year of herceptin was enough for me.
I was dx in 2004, back when Herceptin was only given for stage 4. It was a really scary time for so many of us. I missed out on one trial, then my onc was going to get it for me off label... one thing led to another, and I finished chemo 2-05, and had bilateral masts and recon 4-05. At that time, the FDA lifted the ban for early stage BC, and if you had finished chemo less than 9 months ago, you were given the Herceptin.
I finished Herceptin 7-06, and I am now four years NED.
Herceptin works for 98% of the patients that receive it. We see the crappy reality of this shiteous disease, when we look at our sister jerseymaria, where Herpcetin didn't kill the beast.
There isn't evidence that staying on herceptin longer than a year would prevent mets.
And, in my mind, if I do get mets, I can take Herceptin again- most likely in combination with other newer drugs like Tykerb.
Also, a new primary, may not have the same tumor characteristics as a first cancer. Many women have had trip neg tumors, and a new primary that is ER and HER2 positive.
Obviously it is a personal decision to work out with your oncologist. But part of being finished after the year of Herceptin, is just that. BEING FINISHED. And starting to reclaim your life, and move beyond cancer.
jmho
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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.
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Hi Beth. I never received trastuzumab (see my signature). I am wondering where you saw the info stating 98%? Here is what I found. Hope it is helpful:
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magellan the drug is called abraxane... and you're right. Oncologists are a lot LESS likely to give it.
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Alaska that link only took me to the main page.... i didn't know what I was supposed to be looking for.
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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!
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Hey ladies,
I remember when they told me I would be getting herceptin for one year instead of 6 months as part of the trial....ughhhhh, I had myself a pity party "Oh poor me, why do I have to go a year and others only half a year. And I thought, "Not fair that some ladies get their chemo and are are done and back to their NORMAL lives so much faster..." How silly and naive was I ?????I guess uninformed and so clueless is a better way to put it. I was told that I could pull out of the trial at any time, and honestly I thought I would only do 6 months..But I held in there, and the time seemed to pass quickly. Then I got back to my NEW Norm.. Beth is so right you do have to move on, it's all part of the healing process..IF the ugly cancer shows up again you deal with it then, and thank God that it is available.... I think looking back that even just a small dose each month could have kept the cancer away, BUT no one knows that for sure, and I know at the time I wanted to just get on with my old life...My heart goes out to those who the herceptin has not worked for, and I pray every day for a cure for all of us, no matter what our dx...Hugs to all, nice talking to all of you...KLynn xoxox
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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
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Hmm, can't seem to liberate that abstract. What's the gist?
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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
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OK, now I've read it, but can't say I totally grok it.
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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
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I have not read any current statistics, but my onco told me that tax/her has a 15% higher cure rate for me -- PRE surgery and my tumor has shrunk over 50%. Both she and the residents who routinely examine me are amazed. I had 4 rounds of dose dense A/C, 2 weeks apart, then a 2 week break. Now # 4 of weekly t/h is finished and 8 more to go. I was also told after surgery Herceptin would be continued for a total of one year, but every 3 weeks. It IS all very confusing and there is SO much information that I think even the medical community has confusion with it all.
I do find that this has zapped my energy a lot more than the A/C did. SInce I live alone, am retired, have no pets or real obligations - I can pamper myself and roll over and go back to sleep as i feel like it. Good luck to all and WOO HOO to those with NED.
Hugs, Nancy
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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!
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Diana,
Thank you so much......I find myself up all hours of the night googling......
Do you have any idea when this vaccine will be available.....
Hugs...:)
Beth
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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!
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Me to ladies, I wait for this Vaccine. Was it as hopeful for us her2+++ ( high expresser).. I thought it was more for those low expresser?
Either way, reading on these boards, it seems to me it is for me. Diana, I have no idea how many of my nodes are involved, as I am in chemo first. But your stats look so much like mine. My tumor was 3cm but "they" think I have 3 nodes involved... but we might not ever know if chemo saps them.
Take car ladies... I start taxol and herceptin in the morning and I am scared to death. I NEED to calm down,.. I was not this scared when I started AC.. not at all.
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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
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Estepp: Wishing you all the best as you begin taxol and herceptin tomorrow. You CAN do it! I finished 6 tx of taxol/carboplatin/herceptin on July 22, and I know I was lucky, but my side effects were very "doable." I got anemic so I was pretty exhausted (I didn't want Aranesp or a transfusion) but it didn't take long until I felt better. Like bluewillow, I kept working for much of the time, although I was lucky I had June and July off for summer break when I was most anemic.
Best wishes to you! Listen to your body and REST and hydrate.
Sue
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