HER2 positive and 10 years out?

[lkc Gumby]

Hi Diane,
I can't add really anything to what all the other ladies have said.
I'm not at 10 yrs yet, but am planning on definitely being here for at least 20+more yrs!
My stats below pretty much say it all. I can say it does get better with time.
I am living life LARGE and enjoying every day!

[tricia keegan]

I'm four and a half years out so quite a way to go to hit the ten mark but am ever positive and hopeful

Gabrielle, wow congrats to you...how inspirational your post is to read...thanks for cheering me!

[julieta]

Just... Thank you!!!
Because i found this website!!!!
i'm 38 years
Diagnos: 10/01/08
ER+PR+ HER2NEU+
TAXOL/CARBOPLATIN/HERCEPTIN x6 Herceptin x12
Mastectomy Left.
2cm tumor
1 node + of 29
llB
Tamoxifen
Histerectomy in a month.

[Chelee]

Hi julieta, I'm glad you found us...welcome. Sorry you had to join us...but if you have to deal with Her2 bc...this is the place to do that. Lots of knowledgeable people here...and tons of support.

Chelee

[vlcarr]

I was so happy and relieved to see all these posts. I, too had begun to wonder where the survivors where. I haven't posted a lot on this site but do read the posts & search for information frequently.

I was diagnosed in May, just ended my 3 month clinical trial of weekly Herceptin and 1000 mg of Tykerb each day. I started with a high grade 8cm tumor that can no longer been seen on ultrasound or felt by my oncologist, Her2+, not hormone receptive, Stage II, speck found during sentinel node biopsy. I am so happy with the clinical trial results and I'm trying to celebrate each victory.

Next Thursday, 09/24, I will have a right mastectomy and all lymph nodes removed. Needless to say I'm scared to death and it was such a relief to read all the posts each of you did on staying positive and helping me to feel we have hope.

After surgery, I will have 4 months of TCH followed by radiation and of course continued Herceptin for a year.

I'm anxious about what they will actually find when they do the surgery, but want to know what's in there....

I'm still confused about many thing such as margins and I'm trying to read up on all that.

I got my hair cut really short this week and already have my wig although I don't anticipate wearing it very often but who knows.

Thank you to each and every one of you for taking the time to provide encouragement to those of us who are new to this world of breast cancer.

Love to you all,

Vicky

[Lien]

Dear Dianne,

Oh, don't we all know how you feel! Been there, done that. A friend (who was just 10 years out from diagnosis then) told me: just keep breathing in and out. This is normal. This is what we all feel. But it will fade. You will feel better and better about it every day.

And she was right. I was diagnosed in Jan 2004 and didn't do chemo or herceptin. Just lumpectomy, rads and zoladex/arimidex. I am fine.

You should be fine too. Those stats don't mean very much, really. They are based on outcomes from the past, when there was no herceptin. Your odds should be better now. Also, you haven't recurred during the first year. That's a good sign, so your odds are a bit better than they were at diagnosis. Every month that passes without a recurrence, means your prognosis has become slightly better.

I know it's hard, but with no vascular or lymph node involvement, I think you have a very good chance of never having to deal with breast cancer again.

I no longer worry about dying from cancer. If it happens, it happens. I know I've done everything I can to avoid it, so I'd better get on with living.

So after I finished rads, I decided I could worry about having cancer for 15 minutes max each day. I would allocate a time (early in the morning, or after dinner) when I could think about it and then stopped myself. If fears or thoughts popped up at other times, I pushed them away until the allocated time. It helped me. Perhaps it could work for you too? We are all different and we all find a way to deal with this #%%$^%$ disease. One way or another.

And if we don't know how to deal with it, we come here for a virtual hug and some consoling words or prayers. As you did.

Hugs

Jacqueline

[AlaskaAngel]

Being diagnosed and having to do treatment is a frightening time, and a time for encouragement, hope, and suggestions.

A question that I received was such a good one that I want to share it (and my response to it) with you all.

QUESTION: I just read one of your posts and wanted to ask a question about something you said. "The protective effect of chemotherapy falls off after the first 4 or 5 years." Can you give me more information about that statement?

RESPONSE: The fact that you are questioning what you read, no matter who writes it, is going to give you a strong advantage, so I encourage you to keep that healthy skepticism in figuring out your individual situation. I'm basically "just another breast cancer patient", not an expert, only I've had 7 years since treatment to stumble around trying to figure some of it out.

My observation was in regard to general breast cancer, and so it is subject to the all too annoying and common "it depends" that plagues breast cancer patients because of the wide diversity of our cancer characteristics and genetics. In looking at graphs of general breast cancer (where only 1/3 of all bc patients are HER2 positive and so have the option or benefit of choosing trastuzumab, and only about half of those patients--half of that 1/3--actually benefit from it) the improvement over the years in cancer therapies has been more muted. The graphs that I've seen for general bc patients who are treated with the available therapies have shown a very minimal, slow drop for the first 4 or 5 years, and then a sharper drop off. More recent graphs probably also show some additional extension out in time before dropping, due to the effects of the broader recent use of hormonal treatments.

For HER2 positive patients, on the whole trastuzumab has made a significant positive difference, with the curve extending much farther out before starting to drop. However, a little over half benefit from the drug and a little under half don't. That "half" of the HER2 positives who do benefit from trastuzumab are going to have a different graph than the graph for general bc patients in that the drop off for those patients who benefit from trastuzumab stays level farther out in time, and likely any drop off would consist of patients who eventually develop resistance to the trastuzumab or who develop resistance to subsequent hormonal therapy (or resistance to both).

Trastuzumab has made a positive difference for a lot of HER2s. However, I don't apologize for expressing a somewhat negative opinion. I want to give the others a head start. I want to encourage people not to do treatment and then just "move on" in the hope that is "enough", because making lifestyle changes can influence each one of our personal curves on the graphs. When I look, I see that almost half of the HER2 positives don't benefit from trastuzumab, and because they are on trastuzumab and don't know they are not benefitting from it, I want them NOT to rely on it and start working on whatever other things might work for them in the longer term. When I look, I see those who benefit, but only temporarily due to the development of eventual resistance to drugs like trastuzumab and hormonal therapies, and I want them too NOT to rely on it and to start working on whatever other things might work for them in the longer term.

Let's push those curves farther out in time for more of us!

AlaskaAngel

[DianneS]

Hi Lien,

Thanks for the encouraging words. I just feel like I'm living in a nightmare world since my dx in Aug, 2008. I hope & pray that I will get this mindset under control so I don't think so negatively all the time. I'm a person who always saw the glass 1/2 full. How do I change my basic personality, and learn to worry less? I have had so many challenges esp since 2004 - immigration, brain surgery, ovarian cyst surgery, then this. Our dream of living in the home we built ourselves to retire in has become very tarnished. I had a 5 month period - that's it - before I got news about my aneurysm, where we were enjoying living our dream. I am bitter a lot about what happened to me and yes, it seems totally unfair. I have lost years since 2004 because I wasn't physically strong enough to do much of anything. Getting over an aneurysm takes a few years, tho mine did not rupture, having a piece of skull removed and then replaced is not without some discomfort.

I could not have conversations with more than 2 people for over a year. Couldn't watch TV, couldn't sleep on my left side....and now with this diagnosis, I have lost whom I considered friends. Being an immigrant doesn't help as I don't have a 20 year history with anyone here. THAT part of our lives we chose and we are glad we did, in spite of the fact that we are not geographically close to family. So that is my history since 2004 and I've left a lot out about having to live on a very isolated indian reserve in northern british columbia in subzero weather for a year in 2004 to become a citizen of Canada. That was its own hell and very traumatic.

I had to let one friend go in 2007 who was into things I just couldn't stomach...she had been a 'friend' for about 10 years. Living here fulltime showed me another side of her. Another 'friend' moved back east...another has just disappeared off the radar. I had thought we were pretty good friends.....fooled me. Her sis died of breast cancer recently. Maybe she couldn't handle that thought with me. So I am becoming very insular and afraid to meet anyone anymore, which complicates the whole issue of having bc and reaching out to people. I do reach out and get slammed down.

Lien I will try to take your advice to only think about bc during a certain time of the day.

I just feel like I'm on overload and wasn't able to digest all the other crappola that happened, one after another, before this thing occurred in 2008. There aren't any bc counselors or bc groups in my isolated tiny community. I have tried that route.
How do I keep my mind/body healthy if feeling content or even minimally happy isn't there? Where is the joy in life? Is it gone forever?

Dianne

[Lien]

And one of the things that seem to influence our risk of recurrence is exercise. It's cheap, it's good for our overall health and it makes us feel better. Oh, and I was in a trial studying its effect on hot flashes. It really made a difference. It seems that by exercising we "reset" our internal thermostat. And strength training and running have a beneficial effect on bone density. Did you know that skipping rope for 5 minutes a day can improve your bone health?

If we can manage to do 30 minutes of exercise 5 times a week, cranking up our heartrate to 75 % of our maximum, hot flashes all but disappear and our chances of disease free survival get better.

Now, the hard part is getting started. So find someone to do some exercise with, so you don't have to do it alone and get going.

And this doesn't mean you have to go jogging every day. I ran 3 nights a week, and got on my bike in stead of in my car twice a week. I went to the shops by bike (I live in the Netherlands, where it's easy to do so) and selected a supermarket that was at least 15 minutes by bike from my home. But if you prefer swimming, fitness, tennis, hockey, brisk walking, nordic walking, skiing, cross-country skiing, horsebackriding or any other sport, that's fine too.

While you are excercising, you produce endorfins, which make you feel better. It also helps to keep depression and anxiety down.

Now you must think I'm a health and fitness nut... well, I'm not. I am so impressed with those who manage to do these things. But now that I'm further out from diagnosis, I've become more complacent and lapsed into couch-potato mode. Your posts have woken me up again. Thanks! I think I'll start by riding my bike to the far-away supermarket again. Or I could take the train to work and ride my bike for the last couple of miles. Or... Oh well, we'll see... ;-)))

Love

Jacqueline

[DianneS]

Also -
How do they know I'm cancer free? What tests do they do to determine NED? I haven't had a regular exam, where they feel for lumps (I had dbl mastecomies) since about June. I have had bloodwork but my onc doesn't believe in tumour markers so he doesn't do them. I guess that's why I feel unsure because I don't know what the determining factor is in saying someone is NED.

My family doc did the tumor markers for me last month, and they were all in normal limits but a bit higher than when I still had my tumor. No one seems concerned so I don't know what to think. The doc who is giving me herceptin said 'we don't worry when it goes up a little - it's when it makes a huge jump that we get concerned'. Oh? That true?

One blood test I am getting in Oct. says 'T protein'. Anyone know what this is?

Questions questions!

Dianne

[DianneS]

Lien - (Jackie)

Thanks for posting again. You can see I'm sitting on the computer today, eh? I do exercise daily. Some walks are only 20 minutes. But we try to go on the many hiking trails around here at least 3 x a week. A 'hike' can last an hour or so. I have been doing this to try & keep my sanity all along, even during chemo. Last night was about 2 hours - a day after herceptin, which is my max! I agree that exercise is important to staying healthy. So I hope you are off biking, Jackie. I love the outdoors and try to be outside every day when it's not raining, or even if it is. It does lift the mood and my dogs insist on going daily even when I don't want to, thank goodness for them! I have a sea kayak, and the sea is in my backyard so when the tide is up I have no excuse not to paddle. So far so good without any lymphadema.
Dianne

[DianneS]

What single thing do you ladies who have been NED for so long, contribute to staying NED?

Dianne (I also wanted to say thanks for all the terrific posts. I was going to write you all individually but I see there are too many! Thank you Jessica for the youtube you shared. You are all strong women!)

[ElaineM]

Just thought I would add my two cents worth-------
I was diagnosed in January, 1999 and thanks to Herceptin, a few surgeries, some chemo, a little Tykerb and God I am still here. I told the docs I will be showing up in their offices when I am in my 90's.

[Lien]

Dear Dianne,

I didn't read your reply to me until I'd finished writing the previous post about exercise.

I can tell you are on overload. Know how that feels, been there. I was in a carcrash in 1994, had a whiplash trauma that caused severe balance problems, memory problems, pain in neck and back, inability to concentrate and when I got too tired, I'd have headaches and nausea. During the recovery I accidentally got pregnant, gave birth to a premature little boy, who cried incessantly for 6 hours a day, 7 days a week, until we discovered he had food allergies. Subsequently found out I had severe food allergies and intolerance myself. In the mean time, my husband, whom I had met 2 weeks before the accident, lost his business, because his business partner became addicted to gambling. I lost my job, my house, many friends (I know what you are talking about) and was very, very depressed.

In time, though, I adapted to the new normal. We had moved to my husband's house in a different city, where I knew no-one. I just sat at home and was depressed. Did you realize that moving house is very traumatic? It's the second most traumatic thing in life, after losing a loved one.

And just when I was beginning to make some new friends (don't know where I found the energy to even talk to people), when my child went to school so I had more time to myself, when my husband was building up his business again, so we were no longer poor as dirt, and when the insurance company finally paid out after the accident, BANG! A cancer diagnosis.

So yes, I know how you feel. I know that when one goes through surgery and rads, and chemo (I avoided that) etc one is fighting the disease, one's mind is occupied. And then, when we have time to look around and take stock, it hits us: I HAVE CANCER and it can come back anytime!

It is so scary and we feel we have no control over this beast that blindsided us. And on top of that, nobody really understands what we are going through.

So even if we have good friends, those who stick around and aren't scared to address the issue, we feel so alone, so isolated. Cancer isn't just a physical disease, it also affects our minds. Many of us feel we no longer are able to trust our bodies. And no-one gets that. They want us to feel happy because we survived, but we aren't happy. We are scared or numb or upset or depressed, or all of these mixed together.

Yes, Dianne, I get it. I can understand what you are going through, because I've been there. All I can say is: It will get better. One day you will realise that you are smiling. Or humming a tune. Or laughing out loud, watching a funny movie.

In the mean time, it seems like a good idea to discuss your feelings with your doctor. He may be able to help you or he may refer you to a good therapist. These are major issues and you should accept all the help you can get. Even if it isn't specialized breastcancer counselling. Things can't get much worse than this, and you deserve to get the best care you can get.

Perhaps it could help you to try some of the things I did, when I felt very isolated in my new home. I started taking a course, so I would meet some new people. I did some voluntary work for the parents committee at the daycare centre. Through these I met some people who are now my best friends. One of them actually came with me when I went to my post-op appointment after my lumpectomy. She was with me when I heard I had cancer and I wouldn't know what I would have done without her.

About the tumor markers: Mine weren't elevated when I still had the cancer in my breast. They are notoriously unreliable and we don't check them here in the Netherlands unless there's confirmed metastatic disease. Then they are used to monitor effectiveness of therapies. But even in that context they can fluctuate and even a minor infection can cause them to rise. There is no 100% foolproof method for determining that you are NED, but when there are no symptoms, there's no reason for worry.

Oh, and don't buy that crap about positive thinking or diet or anything else that would keep you cancer free. There are no guarantees. I eat the healthiest diet in the world because of my allergies, and developed cancer anyway. I'm an optimist and stayed positive even though bad things were happening to me: I got cancer anyway. The only known thing that will improve your state of mind, your health and your sense of well-being is excercise. So perhaps you can find someone to accompany you on a daily walk? Going outside, getting fresh air, even when it's cold, is a good way of getting the endorphins floating through your body.

I know it's hard. So don't be hard on yourself. Just take it one step at the time.

Oh, and you do have a breastcancer group: Us.
I have another suggestion for you, that might help. There's a breastcancer list at www.bclist.org, where people find support and hope and friendship. They have an annual gathering coming up in october in Tampa, Florida. They are an amazing bunch and if you can manage to go there, you will be welcomed like an old friend. They are such wonderful people and I wouldn't have gotten through this whole breastcancer experience as well as I have without them. Check it out! And if you write, you will find me there, and I will introduce you to them. They are my long-distance friends. I've met some of them, and they are great.

So, dear Dianne, you are not alone in this. We will help you carry the burden and you will get better and stronger with every step you take. It just takes time. This too shall pass.

Love and hugs

Jacqueline

[Lien]

OOOOH Dianne, You have a kayak! I'd love go out in one again! My father had a canoo and I used to go out with him on the sea off the Britanny coast in France. I loved that. Unfortunately my shoulder was damaged in the car crash, so I don't have enough strength left. Can you go out and paddle around a bit for me?

The walks sound great too. See, you are doing the right things. It just takes more time. And cuddle those dogs. There's nothing like the love of a pet to make you feel better.

Could you possibly get a picture of yourself in that kayak and post it as your avatar? Or better even, send me some pictures? Even if I can't go out in one anymore myself, I love watching others do it.

Hugs

Jacqueline

[bejuce]

What an amazing group of women! Did any of you long-term survivors out there have neo-adjuvant chemo?

Thank you all for your inspiring stories!

[DanaRT]

Vickie,

You're right it is nice to read about all the well-informed surviors of many years. I think Herceptin has given us an edge for long full lives. There just isn't record of it because it's not been used for treatment that long.
It's only been a few years out of clinical trial when I received it as adjuvant treatment. When I would read on the internet "long term survival unknown" my blood ran cold. But I remain hopeful because it's just not "known".

Thinking of you on the 24th. Praying all will go well and for an easy recovery.

[vlcarr]

Thanks Dana. I noticed you received the same chemo I will be getting-TCH for 6 rounds. What was your experience with side effects? I'm scheduled to start on 10/15, about 3 weeks after mastectomy and lymph node removal on 09/24.

[DanaRT]

Hi vlcarr,

I tolerated the TCH regime pretty well. A few down days at about day 2-4 then I would perk back up. The first sign that the chemicals were floating through my body was the metallic taste which is from the Carboplatin. My first treatment was 3 days before Christmas and nothing tasted good. I had a couple good bouts with heartburn--Protonix (samples from the onco) helped a lot. Take your anti-nausea meds at the first sign of gagginess and it works wonders. I never "got sick". Mostly just very tired. I did keep up with light housework and cooking but I took many days off of work. I work chairside for an orthodontist and didn't feel well enough to be perky for 8 hours. I enjoyed a lot of orange sherbert, ginger ale (make sure it really has ginger in it), green teas, 7-up, .
You will be given steriods before treatments to help offset side effects. I was given Decadron. My BIG treatments were every third Friday. The steriods had me feeling very good that my husband and I usually went out to dinner after my big treatment. The steriods made me stay awake for hours and hours. Finally, I was given a script for Ambien. It helped a lot but can be somewhat addicting. Even cutting the tiny pill in half helped take the edge off and make me relax.
My hair began to really fall out on day 14. I had my friend shave it, cried a little bit and then moved on. Hated my wigs. I wore baseball caps for the most part. Went bald at home and visiting. My bald head was so freeing. The smiled to myself as I felt rain on my scalp--a neat feeling.
Welcome the support from friends and family. I invested in stationary. It was theraputic to write heartfelt thank you notes and telling people how much they meant to me.
A few good books and movies help too.
Are you getting a port? My port served me well. It was security for me.

Sorry to go on and on. We can send you a personnal message the next time.

Take care,
Dana

[DanaRT]

Vickie, I left out the joint aches. It is just now getting better but as treatment went on my legs hurt after sitting for a while and trying to walk. I never felt lightheaded or too weak to walk myself to the restroom. The nurses in the chemo room told me many times to be very slow about getting out of bed. Sit at the foot of your bed and make sure you're not dizzy. I would wait a second but never felt woozy.

Love,
Dana