HER2 Positive-anyone 10 years out?
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I would like to know how everyone is doing with success. I've gone through bmx, and exchange. Will be starting chemo + herceptin on July 12th, 2011. I'm scared, but so hopeful.
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Have just been diagnosed with HER2+ breast cancer, have had a lumpectomy and nodes removed. Will be starting chemotherapy/Herceptin treatments in a couple of weeks. Am scared but holding up pretty well. Wish you all the best. Is good to be able to hear comments from other people who have gone thru this experience. Have been reading everything I can find on the computer. Sometimes it makes me feel good, sometimes not.
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ginger & amethyst The thought of chemo is worse for most people than the actual chemo. For me if I could have skipped the last 2 tx of the 6 total it would have been a breeze. There is this gal that gets chemo (TCH just like me 6tx) when I get my herceptin. Her last one is this Tuesday. Except for the hair loss and maybe some minor taste changes she has practically no SE. Our NP calls her the poster gal for chemo.
No one gets all the SE. I got the rare SE but not typical ones like nausua, fatigue. The nice thing is all that stuff goes away. You get better. Your hair grows back. I was so scared that through all the chemo, surgery (hormone therapy) I would never feel myself again. I do. Oh did I mention I just had exchange surgery a week ago Friday? I have to control myself not to do so much because I feel good.
You guys will do fine. Wishing you both minimal SE!
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Thank you so much for your reply. You know, until it actually touches you, you do not realize how many people go thru this. Even though I always read the articles about breast cancer ( my mother died from it at the age of 45 ) and support all the causes related to it, I never was consumed by it until now. I am reading everything I can now and checking every website I can find. Don't want to become obsessive but it's hard not to.
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Amethyst that's totally normal. We all did it. No breast cancer in my family (until me) so I researched like crazy.0
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I am getting up to my three year anniversary this August. It has taken me nearly that long to feel (normal) again whatever that is. I sleep better now and don't worry so much. I've sure learned what's important and what's not. I don't have time for BS in my life. I appreciate everything so much more than I did before bc. I didnt know that the Chinese symbol for danger is - opportunity. We are stronger than we think.
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Congratulations tuckertwo. The 3 year mark is a big deal. Go out and celebrate life!0
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2 years, 7 months. TCH x 3, BMX, TCH x 3, Herceptin weekly 1st 6 months, rads daily x 2 weeks, Metz to vascular, red devil x 3, radical neck dissection, red devil x 3, Herceptin every 21 days (for life), Tykerb 1,000 per day (for life). ---- NED since April 2010!!!!
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Just passed 2 1/2 years in July. I am doing okay still dealing with SE's some what but they are getting easier everyday. My energy is returning still but I had a boat load of surgeries and other issues pop up.
I had a double mastectomy, TCHx6 herceptin for a total of 18, followed by exchange, removal surgery, scar removal, kidney surgery, then 3 flap surgies.....and a partridge in a pear tree.....
I am another who had weird SE's but we are all different so you can't rely on what you will have.
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Hi Tuckertwo. I was diagnosed in Feb 2005 and had chemo, radiation and paid for my herceptin as it wasn't funded at that stage. So I've made 7 years - not 10 yet but sure aiming for it. As others have said, probably the only women that may be 10 years out were part of the initial trials. Not sure if there is any further data available from those initial trials on line but may go searching now. I don't visit this sight at often as I used to but know that the support and encouragement I received helped me throughout my treatment and was really appreciated. To all you women out there currently receiving treatment I hope this post gives you hope and encouragement to conquer to dreaded 'C' - go and kick butt!!!!!!!! Be positive, keep a sense of humour and make the most of every day. xoxox
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I know a woman who has been on Herceptin about ten years. She does not use a computer, so I will phone her. I have been on Herceptin for 7-1/2 years and am doing well. I tolerate it and have infusions once every three weeks. There are always bumps along the road and sometimes scary times but so far NED. My oncologist who retired recently reminded me that I am walking in unknown territory, but all is well thus far. Thanks goodness Herceptin was allowed to succeed and help so many women. I doubt I would be around without it as my cancer episodes returned rapidly.
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when you read "Emperor of All Maladies", by Siddharta Mukharjee (forgive me if I misspell), it discusses the evolution of Herceptin and its first success story, Barbara Bradfield. This was in 1997, ladies!!!
She is cancer free today. This was a woman with extensive lung mets.
When I feel awful and despairing, I think of Barbara. Have even considered cutting her photo out of the book and placing on my refridgerator door.
hugs
j
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Hi there I wanted to post a great success story, yesterday I was in SLC on business and I met with a Dermatologist. We got to talking and she told me she was hitting her 7 year cancer free anniversary the following week.
She was 42 when dxed and was triple positive, she had (wait for it) 26 out of 27 nodes positive and every Doc including her Doc friends were crying when they read the Path report. She got early Herceptin and bilat MX AC/Taxol and is doing great today. She is also on her 7th year of Arimidex.
5CM tumor and 9/9 Bloom/Richardson scale...very aggressive.
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Oh, how I love these stories. Thanks for sharing it!
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Hello everyone,
This is my first post. Thanks to everyone for being there. My hormone receptors are negative but I am HER2+, grade 3. I found the lump while I was 8 months pregnant. I am getting the chemo soup, 4 A/C every too weeks (done with that), 12 taxol and herceptin every week (starting next week), double mastectomy (probably in November), and then herceptin every 3 weeks for 40 weeks. My onc says recurrences usually occur in 2-3 years that is why she is so aggressive. She also says she has not lost anyone with this regimen yet. Anybody else is getting such an aggressive threatment or what is called neoadjuvant chemo (before surgery). I think they will kill me with chemo...
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Hi puce I didn't do neoadjuvent but I too got aggressive treatment. 6 tx of Taxotere, Carboplatin and a full year of Herceptin. Bilateral MX. I'm hormone positivie so I'm taking Anastrozole too. If I weren't I probably be doing the AC as well.
BTW I only have 2 more herceptins left and had my exchange surgery 6 weeks ago. A year can go by pretty fast. Aug.31st was my first treatment (surgery). This will make my 1 year NED!
Good luck with your journey. You'll make it.
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puce - I can't even imagine finding out about BC and having an infant. That's tough. You will survive the chemo. I thought they were going to kill me with it too! I even told the onc PA that I thought that and she said they had never lost anyone during chemo on her watch. I had the TCH version but my second opinion onc suggested the same as yours. I went with the TCH because I felt more comfortable with that onc and his practice. Good luck to you and congratulations on your baby.0
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Hello everyone! 10 years and counting! I've been lurking here for some time and this topic caught my attention. So much good information. I've never posted so I'm not sure how this works but wanted to post a little bit of my story and maybe give some hope to those newly diagnosed. (I was always looking for that, but ten years ago the Internet was not what it is today). I was originally diagnosed in December 2000 at the age of 28 with no family history...crazy I know! My diagnosis, from all the research I have done over the last ten years, seems to be a bit unusual. I was diagnosed with Pleomorphic infiltrating ILC, ER+ 10%, PR - HER2+++. Stage 2 with 1 positive node (translation...sneaky cancer that is agressive, not what you want to hear). I was lucky enough to be part of the clinical trial for Herceptin and received it for one 1 year every 3 weeks (thank god!). I also had a lumpectomy, 4 AC x 4 T plus radiation. I took tamoxifen for 2 years until I experienced complications and stopped. So now I am 10 1/2 years from original diagnosis and quickly approaching my 40th birthday! At the time of diagnosis I told myself I would have a "Kegger" if I made it to 40 (I was 28 at the time, what do you expect?!). Now, as all my friends fret the dreaded "40" I'm happy to just be here and have a nice quiet celebration of the life I've been able to enjoy (no kegs will be involved
). So hang in there ladies! I realize that the long term survivors don't come around because they are out there enjoying life, but we are out there! I (guiltily) am one of them.
I just hope my post gives some hope to those on the boards that it can and does happen!
Here's to 40 more years for all of us!!!
XOXO0 -
Thanks for posting, dottiesb!
Awesome story!!
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dottiesb thanks for sharing. Happy birthday! and many more for you.
I had fun in my 40's (except at 49 when I got my diagnosis). Not sure about 50 since I'm only 6 months into it but so far better than 49
It's great to be alive isn't it!0 -
Dottiesb - LOVE your post! Thank you so much for the inspiration. Happy Birthday! I love birthdays now - a few years ago (pre-diagnosis) I dreaded turning 40, and a few weeks ago I HAPPILY turned 45. Birthdays are awesome.
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Dottiesb - Happy Birthday to you!! Thanks for sharing your story it's good to know. And, thanks for participating in the trial that paved the way for so many of us to have herceptin!0
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Thanks Dottiesb!!!! Just the encouragement I needed today!
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dottlesb-Thanks! You are an inspiration!
omaz-what is TCH? Sorry, new at this.
lago-1 year NED that's awesome! By exchange surgery do you mean your bilateral mastectomy? What did you choose for reconstruction? I'm planning mine for November...not sure what to choose?
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puce - taxotere, carboplatin and herceptin0
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I wonder why they have different chemo protocols for the same thing. Did your onc tell you since you had a second opinion?
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puce - They are both standard of care as far as I know. I think the docs make the recommendations based on their perception of individual patient needs. If you are interested you could check out the NCCN guidelines. Register at the top right and then go back to the main page and scroll down to the breast cancer section.
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As far as different protocols - I was told I would get AC+T by one onc and TCH by the second opinion.
I took the TCH option because of the reduced cardiotoxicity. My onc told me that because of my age (35) that he would recommend not doing Adrimycin and Herceptin because they are both cardiotoxic. He also cited an increased risk of leukemia down the road with Adrimycin.
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Thank you everyone for your responses. Thank you for the birthday wishes but I will still be enjoying my 30's for a bit:). You know they say the older you get, the faster time flies (so true!). But when the big 4-0 hits...bring it on baby!
I was just aiming to provide some hope to those out there at the beginning of their journey. When I was diagnosed at such a young age with Grade 3, HER2+ (and ILC on top of it) it was so discouraging reading all the information that was out there. I thought I was a sitting duck! But...I believe Herceptin is a miracle drug and I am so grateful and privileged that I was able to participate in the trial that has helped so many since it's approval.
The big "C" hasn't always been an easy road (obviously!) and it has taken things away from me. But, I can say...I feel extremely lucky to post here today, I don't know what the future holds and I don't care because I'm still here waiting to find out, the medicine today is better than it's ever been and it's only getting better. So....hope for the best, pray for the best, and expect the best! That's the best we can do!!
Fight on and conquer!!!!0 -
Dottiesb - thank you so much for posting your story!!
It is great to come to this forum and see such positive stories.
i just had my second every 4 month oncology visit since completing Herceptin. So far so good and looking toward the next followup in 4 months.
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