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,

Re: percentage of those who respond to Herceptin
 

Dear Adrien and Gerri,

Thank you both so much for your replies and for being so quick. I live alone and so hearing back was so meaningful. I am so sorry for your recent losses. Thank you for your support - especially during such a difficult time - I truly and greatly appreciate it.

I just wrote a reply, but, because I was not logged in, I lost it (feel like I am losing my brain).

So this is my second attempt at replying.

I had expanders put in - that is what I was told was the thing to do - when I had the mastectomy. So now I can not have an MRI until the expanders are out. My onc says that is okay. But, obviously, I can not delay having the surgery to get these out for too long. So, my surgery (that was scheduled for 3/29) is now postponed - for about 5 or 6 weeks. I am not sure of the new date. I just told my surgeon I could not do it yet.

The expanders are so uncomfortable. Because of the expanders I am physically uncomfortable all of the time, in pain, have limited mobility in my arms (one frozen shoulder - perhaps from radiation - but either way - it is not cooperating).

I feel so ashamed to be seemingly unable to cope. I just wish I didn't have these expanders in my body.

Thank you so much for getting back to me so quickly. it helps a lot.

Lisa

Re: percentage of those who respond to Herceptin
 

That must be very hard living by yourself and with a baby too. How did you do it. No wonder you're at the end of your string. Don't be hard on yourself.You've been brilliant coping this far.
PS What are expanders?

Re: percentage of those who respond to Herceptin
 

dear lisajean - i live alone too and i am (and have always been) a bit of a loner on top of that - so it can be lonely business at times when you have breast cancer. one of many great things about this board is that you don't have to be ready to talk about BC at 5:30 on a tuesday night at a real-life support group meeting. if you're freaking out, as so many of us have, you can come here and post at 1 in the morning and almost always find support, or at least feel better for having vented. please don't feel ashamed about being unable to cope. it can be overwhelming. honestly, anti-depressants and/or anti-anxieties such as ativan can be extremely helpful at this time and give you the balance you need. it's nothing to be ashamed of - i'm on them! :)

i started this thread and i am kind of sorry i did because all it did was freak me out more when i was already anxious from my oncologist's 50% reply. nothing against those who responded - just that i finally came to realize that statistics can be pretty useless for those of us in the trenches and only serve to scare. we don't need that. we're not a statistic. someone here has an awesome sig file that says something like 'i'd rather be living anecdotally than dead statistically' and i recall beaming the first time i read it. THAT is the way to think. at herceptin the other day i just sat there feeling confident that it is working just as it worked on my sister's friend's stage 4 mets - all by itself it melted them to nothing. i visualize any leftover cancer cells shriveling up to nothing every time i have herceptin or a jolt of radiation.

i don't know how much time you have for reading with a small child, but i would seriously suggest an excellent book by Musa Mayer called "After Breast Cancer". it is actually a pretty quick read and i highlighted the hell out of my copy. i got it for free from Genentech when i joined her2connection. in fact they recently, for some unknown reason, sent me 3 more books. i'd offer to send you one, but i already passed them on to others in the same boat. but if you contact them, they send out useful emails and you get that book. i also find that it feels better when you at least have some sense of being able to do things to help lower chance of recurrence and there i have found the book 'Anti-Cancer' very useful as well. he doesn't pretend to have any cure-all's, but offers great information on how to be pro-active about your health and life. i like the fact that he is not only a scientist, but also has cancer. he writes in a very accessible way and i don't feel like i'm being bombarded with a 'you must be a raw foodist and take all these supplements blah blah blah' message. it's more like reading it and going 'wow, i think i'll try that and nah, i don't think that's for me' kind of thing. because, after all, even those who've lived and eaten "well" have gotten breast cancer anyway, and then you have julia child who ate meat, used butter and cream to excess, and loved her gin and lived almost 40 years beyond her mastectomy! so.... here's to doing what feels right for yourself. :) i just thought i would share some things that have helped me calm down the freak outs and suffer them less frequently. and this is coming from someone who was hyperventilating the first night i grasped what the hell her2+ breast cancer was from internet - which scared me with overly grim information but then led me to this site! best to you, i hope you feel more peace very soon. valerie

Re: percentage of those who respond to Herceptin
 

I'm also in the category that Herceptin didn't work. I like to be on as few drugs as I can be, and my onc has agreed. Tamoxifen and Herceptin didn't stop a tumor from forming on a vertebrae in my neck, so had a hysterectomy so I could start Armidex, but the side effects were more that what I wanted, so changed to Femara. I go in for a CT scan and an MRI in a few weeks, so am hoping that things are clear. If not, then I will start Tykerb along with the Femara. Does anyone else do that combination?

Re: percentage of those who respond to Herceptin
 

Dear Adrien and V-ness, the baby is my nephew. I should crop the picture so that he isn't in it. I just like this picture because, well, I was happy there and it was one week out from my first chemo, still had my hair, still looked like me, even felt like me.

I feel bad - making you think I have a child when I don't. No, I live alone and I am no hero.

Expanders are something they use to allow for reconstruction. These are placed under the pectoral muscle and expanded with saline over time to stretch the muscle to allow for an implant to be put in at a later point. I was assured this was the standard way of proceeding - mastectomy (I had option of just the right side or bi-lateral, I went for bi-lateral) with expanders placed at the same time. So, I ended up with an expander on each side.

I feel like there is an over focus on my looking normal, rather than just my healing and having the best chance of surviving. I was told that I would get through this, that it would be a rough year, year and a half, but, that I would get past it and look back on it as something that is past. I can not even imagine that now. It was nice to hear in the early days, but, a bit hard to believe in now.

Thank you for the advice on taking anti-depressants or ativan. I do have ativan, so maybe I will take that today.

I was pretty sick last night - let myself get dehydrated - maybe it was all the crying I did yesterday :)

My blood pressure got really low and I was upside down fast. Had the paramedics out, if you can believe that. But, I had no way to drive anywhere and it was one in the morning, so that was my only option I felt. I was pretty scared as I had pretty low blood pressure the day before and yet forget to drink much in the way of fluids Fri or Sat. - really stupid. But, everything worked out and hopefully everything else will too.

Thank you for the book recommendations Vy-ness, I really appreciate it - and since I do not have a little one - I should have time to read it.

Does anyone know of any financial resources available to cancer patients. I think that is a big part of my problem - worrying about my financial situation - keeping a roof over my head and insurance.

Thank you all so much!

Love and peace,
Lisa

Re: percentage of those who respond to Herceptin
 

I happen to like statistics and wanted that information given to me when I had the chance. I also kept it from my friends and family. People react differently to the same statitics. I actually was more afraid that a negative reaction of a loved one would make the information I received seem like bad news and I didn't think it was so bad. I just know that the therapies that I chose to take gave me the best odds for not recurring within 10 years. I try not to focus on the percentage of recurrance but rather on the odds of my survival. Odds are in my favor. We have to remember that being given better odds of no recurrance in 10 years versus the odds of having a recurrance is a good thing. Do we wish those odds were improved? Of course! But lets hold on to the positive side of the statistics. It isn't about living or dying, its about living until I die.

Re: percentage of those who respond to Herceptin
 

here is a great little essay on statistics and cancer: http://www.ibcsupport.org/median.html

valerie

Re: percentage of those who respond to Herceptin
 

I have searched and asked several oncologists for stats on recurrence based on other factors at diagnosis like stage and ER status. Logically I know that more women diagnosed with Stage III breast cancer (like me) recur than those diagnosed with Stage I.

I believe throwing all women who receive Herceptin in the same bucket for 5 yr stats is misleading and unnecessarily frightens many women diagnosed with early stage breast cancer. Women diagnosed with Stage I disease who receive Herceptin are very fortunate and should have great hope for a long healthy life.

Re: percentage of those who respond to Herceptin
 

Hi... new to group, so no picture, no stats ... but I do want to add that I have seen somewhere that Herceptin is "effective" (no explanation of exactly what that meant!) for about 75% of BC patients. I found out pretty quickly that I am one of the "unlucky 25%."

As I'm E/P - and HER2+, I was given six sessions of T/C/H --- my tumor did shrink for the first four rounds of treatment; HOWEVER, it came back to original size and grew quickly during the last two rounds. After that, I had surgery (radical mastectomy with 17/36 nodes +) and then quite a bit of radiation. A week later (by accident: x-ray for possible pneumonia) I discovered that I had numerous tumors in my lungs.

My doctor offered me a study protocol combining Tykerb and Navelbine (simultaneously). I began that and within two months I was NED (no evidence of disease)!

So, don't give up hope. I have remained fairly optimistic (or at least accepting) throughout...even when I was told that I had 2 months to 2 years to live (after the first treatment did not work). Keep positive. Look for humor anywhere you can find it.

When I lost my hair and had wisps of hair waving on top of my head, I complained to one of my chemo nurses who told me that most people did not go completely (and beautifully) bald but looked more like baby chimpanzees! Well, every time after that when I looked in a mirror I thought of a baby chimp (with a goofy grin...the chimp, not me) and laughed (maybe me, too, after all)! That really confirmed to me that attitude is everything!

Look for the positive: because of my radical mastectomy, I no longer sweat on that side, so my deodorant expenses have been cut in half! And my wig looks better than my original hair did, and I now get dressed much faster than I used to!

I also go weekly to a wonderful support group which has 10 to 20 attendees and a couple of really good therapist-leaders. I read somewhere that THOSE statistics state that people who attend support groups live twice as long as people who don't. While I'm sure that those stats relate to in-person groups, I would think that online support groups would raise statistics, too!

Will need herceptin
 

Was told by the oncologist that I met for the first time yesterday that he recommends herception after my four rounds of AC, and four rounds of taxol. I'm progesterone and estrogen receptive, and HER2+.

Re: percentage of those who respond to Herceptin
 

Jann, great news that you are now NED. When were you diagnosed? Not sure that herceptin is working for me either. have been told that I am showing 'partial response'. Not good enough for me!

Re: percentage of those who respond to Herceptin
 

If somebody was responding to herceptin and then she is responding no more, what should she do?

Re: percentage of those who respond to Herceptin
 

She probably can get Tykerb - because of the smaller molecule size, Tykerb can work when Herceptin doesn't. There are some other new medicine available also. Her doctor should help her get into some of the clinical trials.

Re: percentage of those who respond to Herceptin
 

How do you know if you are responding to Herceptin? I just had my 3rd round of TCH on Tuesday, but haven't had any tests recently that I would think would show something like this.

I'm confused and worried now, should a test be done?

Thank you for any information.
Mar

Re: percentage of those who respond to Herceptin
 

you don't know. there isn't test to tell you. you just put your faith in it and think positive unless you find out otherwise. that's how i do it, anyway.

i had TCH like you, finished the H in october. clean mammo and clean MRI under my belt so far and lots of manual exams in between. are you a stage 1?

the way i've come to see it is that we didn't know in advance that we had cancer coming on, and we can't know in advance if it is recurring. all we can do is our best to keep on top of the way our bodies feel and keep current on doctor visits and meds like tamoxifen, topped off with better nutrition and exercise habits.

valerie

Re: percentage of those who respond to Herceptin
 

I just finished my year of herceptin. I asked my oncologist monday what was my chances of reoccurence. He said with more than 10 lymph nodes being involved and by completeing one year of herceptin my chances of reoccurance had decreased 30%. He said my changes of reoccrence before herceptin was 80% and to make it easy math we would use 75% and with the third percentage improvement i was looking at 50%chance it would come back. i looked at it as 50% chance it would not come back. my radiologist says i have increased my chances of it not comeing back by doing radiatoin and he says maybe only 30% it will return. I am a bit confused on all this. but i am very glad they have not told me it WILL come back. my oncologist also told me with a year of herceptin it takes care of the over espression of hte cells and makes me like anyone that had breast cancer that was not her 2 neu. aNyone been told that before? My oncologist wanted to see me every 4 months but i asked for every 3 months and he agreed. I will have a PET scan and a MUGA scan before i see him in august.

Re: percentage of those who respond to Herceptin
 

Candlegranny

You look and sound wonderful. I finished by herceptin in October. See my oncologist in July.
I see either my surgeon or oncologist every 3 months. I am almost 2 years NED. I believe I will continue to be NED. You have to have positive thinking no matter what - and believe me before the cancer most of my friends would have said I saw the glass half empty. Now I see it glass half full every morning I wake up.

Re: percentage of those who respond to Herceptin
 

V-ness,
Thanks. I was at stage 2b. So glad to hear your tests have been clean. I hope I will be saying the same in the future.

Wanted to ask, when you went to just getting the herceptin, did you have a lot of different side effects? I was reading some posts yesterday of people that had problems when they went to just the herceptin. Just wondering.

Thank you for your response.

Re: percentage of those who respond to Herceptin
 

Hi, LisaJean,
I lose it all the time. I admit it! It's been one year since my dx, and I still cry when I drive, take a shower, whenever, there's no set time for me. If I'm cleaning my daughter's room, that gets to me. But, after I lose it, I'm back again. We're human, we are allowed. I get a lot of inspiration from this list and I also have been down after reading some of the stats or hearing about someone who's not doing well, or worse. So, it has become my "thing" to remember Kathleen Russell Rich, so far a 20-year metastatic breast cancer survivor who seems to be thriving. It is not an easy road, it is not fair, it is ugly, but you WILL find ways (your own) to cope and fight back.

The other day I had a doctor (outside of my normal center--he was handling a clincial trial I wanted) say to me, "If Herceptin worked for you, you wouldn't be speaking to me, would you?" How does one take that? Who is he to say it doesn't work for me? I get mad, and that helps reignite my fire to fight.
Take care,
Karen

Re: percentage of those who respond to Herceptin
 

Im three years 9mo out and Ive been able to let go of all the percentages because I asked my Onc how many woman He has seen reoccur since Herceptin has been used on early stage Breast Cancer. His answer; One. One person reoccurring when those chemo rooms are packed. Its been just great being able to live and not worry so much. God Bless