percentage of those who respond to Herceptin
 

hi -

on a cross-country plane trip recently i read the book HER2. chalk it up to chemo brain and too many hours on a plane, but i didn't ever quite grasp what PERCENTAGE of women with HER2+ breast cancer respond to herceptin. when i started Herceptin i guess i assumed the response rate would be, i don't know, something like 80% since it is hailed as a miracle drug. i imagine that i picked that nice number out in my mind because that's what i wanted to think. my oncologist must think i am an ingrate because i told her today i "wasn't that impressed" with numbers i read in HER2. she was surprised and drew me a graph of how drugs usually affect cancer and then how dramatically Herceptin affected by comparison. she told me about ASCO and how when the results were shown there was a collective intake of breath by 18,000 people.

but i am totally ignorant! i only got introduced to breast cancer in august! before then i didn't even know there were different kinds of breast cancer, nevermind HER2. so to me a "Miracle Drug" would be one that saved like - my magic number - 80% of lives. she told me today that it works 50% of the time. again, i hate to sound like an ingrate - i mean of course 50% is better than what preceded it! i'm sure it's staggering to an oncologist. but to a woman who had it in her chest, i'd like better than 50/50 odds it will work. again, i want to stress that i am extremely grateful for it because when i first looked up HER2+ before i got to see an oncologist i had a panic attack complete with hyperventilating. then i heard about Herceptin and was hugely relieved thinking, without question, this will work!

so today i sat in the infusion lounge thinking, for the first time (i know, i am an idiot), wow there's a 50% chance this is not working for me and that was a scary thought. i have to tell myself "hey dumbass, remember when you were hyperventilating about 'poor prognosis'? this is a hell of a lot better!" i know, some of you are probably thinking 'how could you be so naive?' but i heard Miracle Drug and thought higher than 50/50. i am laughing at myself even now. when i got diagnosed i immediately thought Cancer = Death because my bob died 10 wks after diagnoses. i have SUCH a better prognosis being stage 1 breast cancer and with Herceptin, i have no right to feel scared over a 50% number.

if that number is even correct... is it?

valerie

Re: percentage of those who respond to Herceptin
 

Valerie
I like you thought the percentage was much higher than 50%. Maybe I need to read the same book you have.
Does anyone here know the percentage?

Re: percentage of those who respond to Herceptin
 

In the initial adjuvant Herceptin trials, Herceptin improved 2 year survival results by 50% (meaning that half the women who would have recurred didn't) but the 5 year results are a third which holds up for metastatic disease too (in general). We will see what the "over time" results really are because I think that like Tamoxifen, over time things wane.

So, for now, 5 yr recurrence free survival is 33%

Re: percentage of those who respond to Herceptin
 

Wow. I too was hoping chances for no-recurrence in 5yrs was better than 30% (1 out of 3). But then again, we are all just guaranteed here and now. Everyday we drive our car or ride with somebody our time on earth may be up. So...getting caught up in the number game is not something I want to do :-) after all, my time is still in gods hands. I have to keep reminding myself that.

Re: percentage of those who respond to Herceptin
 

i am mystified then by the Oncotype DX. my score was 56 = 33% chance of recurrence. chemo, herceptin and tamoxifen were supposed to knock that down to 12% - i could have sworn that was a 10 yr figure. so.... the 88% chance of no recurrence i was so grateful for was just meaningless? i am so confused and feeling negative about being positive.

i already drove a car into a telephone pole once and went headfirst through the windshield so i used up that favor from 'god'.

valerie

Re: percentage of those who respond to Herceptin
 

Yeah, Valerie, I think we all get a little anxious over the stats at times. I refuse to hang on them, either way. What does it hurt to be an optimist? Nothing. I once had a friend who chose to see the glass half full...ALL THE TIME! Irritated the heck out of me, because I came from a long line of pessimists! When my friend got cervical cancer, she didn't despair. No, she believed she would survive to become a mother and she did. Today over a dozen years later she is the mother of two soon to be teenagers. She plans on living to be an old woman. Why not?

I watched her and decided she was on to something. What was going to be was going to be. I have no real control over my life, really. I do have control over how I deal with the adversities of life. I can choose to see the glass half full.

I do not know whether Herceptin will stay the cancer beast from my life indefinitely. I choose to believe it will. It's as simple as that. If I, God forbid, should recur I'll deal with that then. For now what does it hurt to believe in the best? Is that naive? Don't know. Don't care either. It lets me sleep at night and move forward with my life in the morning.

Of course, I wouldn't mind that 80% either......

Re: percentage of those who respond to Herceptin
 

I don't have the stats in my mind (or much else for that matter), but I think there is some misinterpretation here.

50% reduction in recurrence risk at 2 years doesn't mean there is only 50% chance you won't have a recurrence. It means that whatever that stat WAS (and it would vary by stage i.e. stage 1 would have lower risk than stage III)), that risk is cut in half by Herceptin.

So say a person's 2 year recurrence risk was 20%, with Herceptin that would now be only 10%. Or if it WAS 70%, it would now be only 35%.

Having said that, remember that nobody is a statistic, we are all individuals!

Re: percentage of those who respond to Herceptin
 

I asked my onc before I started chemo what my odds were of recurrence. She said 15 - 20%. She said if I only had surgery it would be 55 - 90%.

So, I will choose to look at it that way--I have an 80% chance it will not recur. One of my dear friends is a survivor of metaplastic bc which only represents 1% of bc diagnosis. Like you, Laurel, her attitude is we just have to live our life--of course that is easier some days than others.

Re: percentage of those who respond to Herceptin
 

Chrisy is right. You are not looking at the statistics right.

Let's say at Stage 2 if given chemo (with surgery +/- rads) you have a 30% recurrence rate but if you're given Herceptin too, your 2 yr recurrence rate would become only 15% (as Herceptin halfs that) and then as time goes on, the rate would flatten out to about 20%. The difference is that you are assuming that all Her2s or all with bc recur and that does not happen, even if you don't get Herceptin. Herceptin just lowers the recurrence rate of those who would have recurred (and you don't know who you are until you do recur...). A Stage 1 woman has less odds of recurring and so on so treatments that lessen recurrence rates are most effective on those that are at higher Stages but those treatments do help all. A Stage 1 woman might only have a 10%-12% chance of recurring and taking Herceptin would lower that to 6% or so.

Re: percentage of those who respond to Herceptin
 

Thanks Becky and Chrisy for the clarification. And...just for the record :-) this is one more reason I love coming to this board. Wether we are a half full or half empty person, we can come here and ask our question and take each other serious without judgement. I love it :-) Thanks gals!

Re: percentage of those who respond to Herceptin
 

Well now you all have me thinking (did you see the smoke rising in the east, or west depending on where you hail from?). To tag onto what Becky said it seems I recall where the response to Herceptin was also influenced by the amount of over expression of Her2. I was a 6.9 on FSH, so I'm quite the little over expresser!

This thread, and worrying about Ellie's news today, gave me a nightmare. In my dream I was in Sam's Club getting that call from the radiologist about my bx results. My knees nearly buckled when her first words were "are you driving?" I woke up with my heart thumping reliving that moment again. The fear of recurrence runs very deep and permeates our waking and sleeping moments despite our best efforts to contain it. It's the ultimate stalker.

Well, like Mr. Spock always says: LIVE LONG AND PROSPER!

Re: percentage of those who respond to Herceptin
 

thanks everyone. i actually am a 'half full' person most of the time and i don't know anyone who doesn't dip into the 'half empty' range sometimes, as i did last night. i ended up calling the HERsupport hotline last night and spoke to an oncology nurse. it was the first time in all these months i've called any hotline at all and am glad i did. she helped me understand things better and reassured me that my oncotype DX is specific to the genetics of my tumor and thus the most accurate reading where stats are concerned. a klonopin also helped.

i just hate math and statistics and i have no idea what prompted me to even bring the subject up with my oncologist. i do wish she would have said "in your case, valerie...." but whatever, i had my meltdown and recovered. i usually live like i haven't had cancer since it was removed on september 8 and ironically someone on another support board just wrote me the day before telling me how she admired me for being so positive, unconcerned with recurrence. but we all are at one point or another, particularly when presented with confusing information. it's the nature of the cancer beast. god, when bob had days to live we both still thought positively. we thought he was not only gonna get out of the hospital, but going to beat his cancer. i wouldn't have even had a meltdown if he was here to talk to. i get lonely and don't want to burden my friends or family with my intermittent fears. surely i'm not the only one screaming obscenities from time to time asking what the hell 'god' wants from me.

valerie

v

Re: percentage of those who respond to Herceptin
 

Not to add more confusion to the mix, but I happened to catch Francis Collins, the director of the NIH, talking on our local NPR station on Friday (see podcast here), and he said that Herceptin's response rate is around 40 %.

I was expecting it to be much higher as well. I had read the HER-2 book a while back but my chemo brain probably made me forget about it.

In any case, I think there are a lot of inconsistent numbers out there, so I decided to call the HER connection support line. The nurse I spoke to wasn't entirely sure and she'll call me back on Monday to confirm, but the number that she uses is 50-52% reduction in recurrence rate in the adjuvant setting. She thinks the 40 % refers to the metastatic setting.

I'll post an update when I hear from her. I asked her to give me their latest stats.

Enjoy your weekend!

Marcia

Re: percentage of those who respond to Herceptin
 

I'm still not clear on stats BUT I'm one on whom it does not work.
Adrien

Re: percentage of those who respond to Herceptin
 

What is the borderline number?

Re: percentage of those who respond to Herceptin
 

Hi everyone,

I spoke to a nurse at the HER2 Connections program yesterday (the number to call, btw, if anyone is curious is 1-866-449-4372). She told me that "response rate" is a term used only for metastatic patients, as in, how many of the patients when given the drug will show a response to it (tumor shrinkage). For those taking Herceptin in an adjuvant setting, the term they use is the "recurrence rate" or the rate by which patients on the drug would have a recurrence down the road.

So she clarified that the 40 % number is the response rate for metastatic patients, and the 50-52% number is the reduction in recurrence rate for the adjuvant patients. Note that these are the numbers officially provided by Genentech at the moment. I've seen higher/better numbers being given by oncologists elsewhere.

The lesson for me is not to focus on those numbers so much. Of course it helps hearing all the success stories out there; I try to tell myself that we're making history so to speak!!

Keep healthy,

Marcia

Re: percentage of those who respond to Herceptin
 

The 50% rate is for the first 2 years via the adjuvant trial. Follow up on those women at 5 years shows a 38% rate (31% if Herceptin is used alone).

There is lessening of affect because some recur later naturally. This lessening will continue over time but those getting Herceptin are better off than not but 50% no longer holds true and over time, the 38% won't either.

PS - After thinking, I feel I have not been very supportive in my message. Although my stats are correct, one must always remember that treatment of any kind is given to reduce the odds of recurrence, either local or systemic. For everyone, it is not a cure all but for many, it certainly is. Even after 5+ years out, I too think about recurrence as it certainly can still happen. However, every day and every year that passes, that chance does diminsh. I do remember the first 3 years out, especially the first one or two years, when the threat of recurrence is all you think about. It is normal but it is also not right. But many things are not right - like having to join our special club in the first place. All treatment works well and gives great stats in the get go but that does fade over time. Use that time wisely and put yourself in a good place. Enjoy yourself and your life. It holds true for everyone, not just cancer survivors. Keep thinking of yourself as a survivor because you are.

Re: percentage of those who respond to Herceptin
 

I feel sick. I am so scared and worried. I don't have a right to come here with that - I mean we are all going through this. I was diagnosed in March of 09, had 6 rounds of taxotere/carboplatin, bilateral mastectomy - Aug, 09, rads (were delayed by infection) completed by 12/09. I am completing the year long Herceptin now. Terrified to be going off of it. Terrified in general.

How does one get through this? Does one get through this. Sorry to be so grim. I just postponed reconstructive surgery because I am feeling too weak (body and mind) to have it right now. And, I just want to survive this - having "breasts" again seems so stupid right now, like I care about that.

I have just lost it recently - having trouble holding it together - so I came here and now, I am even more afraid. Any suggestions? Anti-depressant maybe? I don't know what to do.

Re: percentage of those who respond to Herceptin
 

YOur post brought tears to my eyes because it is how many of us have felt and many still do.
You did just the right thing postponing your reconstruction. There's plenty of surgeons around who can do that when you're ready. This is the time to be kind to yourself, rest, heal, call upon your family and friends ( I really hope you have someone there for you). CRy lots and laugh lots, dance, walk in the rain, pick flowers. Do what you want as much as your circumstances allow you.
I'm sure you'll get much more practical advice from others here but I feel strongly this is your time for you to do what makes you feel goood. Anti depressants are quick fixes. While i wouldn't say don't take them-think-what else makes you feel better?
From one who's been there many times.
Love,
Adrien

Re: percentage of those who respond to Herceptin
 

Lisajean,

Of course you have a right to come here with your fears, that is exactly what our support board is for. We have suffered so many loses lately, and it is a very sad time for us, but please know that there are many of us out here that are doing well.

I don't know that I have any great words of wisdom about how to get through this, just know that it does get better. Take one day at a time, and if that is too difficult break it into smaller parts. Make sure you are getting enough rest and are eating well....and don't forget to breathe...slowly and deeply, it will release some of the tension you are feeling. Be sure and mention to your onc that you are having a little trouble dealing with the stress - your emotional health is important too as you go through treatment and he/she may have some suggestions to help you cope.

Come here anytime you need support - we are here for you.

Take care,