HER2 Positive-anyone 10 years out?
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Dottie
Thanks for your story! Did you do anything else hormonally after you quit Tamoxifen? IE AI's or hysterectomy?
Congratulations to you!
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Thank you for the information. I didn't get a second opinion. Maybe I should have. I am always terrified when I go to my MUGA tests that my heart will not be able to withstand the chemo. Plus another test takes away from your good days. The guidelines are very helpful. I wish I was more informed when I started my journey. I wanted to start quickly and I was not really offered any choices, I didn't even know I had them.
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hi ladies ! I passed my 6 yrs may 2011 living large and thankful every day.!
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Way to go Ikc!!!
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Big Thanks to you gorgeous ladies, I am at the beginning of that one year stage after the fact ! All your comments are inspirational, Thank You also IKC
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hi,
I am from Sydney Australia, am a biochemist and had been a lecturer at the university till 2004. I was diagnose with HERS positive 2 years ago (sept 2009).The tumour was 10mm, clear margin, node negative. after doing much reseach i chose lumectomy and no treatment as the tumour was in the early stage and treatment has too many side effects. just two weeks ago i discovered a lump under my armpit on the same side of the previous tumour and am waiting to see my doctor in one and a half weeks time. i have no doubt that she would suggest masectomy and herceptin/chemo treatment. I do not have much faith in these treatment. my research tells me recurrence happens to almost all patients even after five years. the 2 ten years survivers replying to your question both has reccurance and one of the 2 still battling with the disease. One paper I read reported 'fewer than 5% survive 10 years'. Has any one uses alternjative medicine? there is a doctor in houston Texas who claims he has found a cancer cure without surgery. his name is Burzynski. I am considering his method since conventional method has very poor prognosis.If you want to know more search for Burzymski institute in the net. It seems his treatment has been very effective. Aother therapy is thermal therapy. This method uses temperature to kill the cancer cells. the theory is that cancer cells are more sensitive to heat than normal cells. Mayo clinic is known to use this therapy. if any one has used other treatment than conventional treatment I like to hear about it.
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Leefun It appears you posted on the wrong thread. Check out the alternative threads. Many of those threads discuss Dr. Burzynski and non conventional treatment.This is a thread celebrating those who are HER2+ and surviving.
I don't know where you get your information but recurrence does not happen to almost all patients in 5 years.
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hi lee asbell'
congradulations! i did not expect any one surviving 12 years. thank you so much for giving us hope. are you still taking medication?
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hi lago,
thank you for telling me about alternative thread. where do i find the site? this is the first time i posted.
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There are several threads here: http://community.breastcancer.org/forum/1210
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leefun - Welcome to BCO! It takes a little time to find your home threads, Lago is right, your thought that nearly all recur in 5 years is not supported by the statistics at this time. Check out lifemath.net.0
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Thanks for the link Omaz. Very good information!
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Mmm5- I chose not to do any additional treatment because of my age at the time and that fact that I was only 10% ER+ and PR-.
Leefun- I am 10+ years from diagnosis with no recurrence and I hope it continues
Hope all you ladies are doing well!0 -
ThankYou lago, I was getting annoyed and upset with leefuns negative comments and or opinions ! First of all she dose not know what will happen ten, five or one year from this point for most of us ! Secondly, most of us are aware of the alternative medicine that are available. Statistically speaking, what are the survival rate of those whom have chosen alternative medicine against conventional and survived more than 1 year, without any surgery. I would say to you leefun, when you try Dr Burzynskis theory tell us how you went later, or are you somehow already connected with the alternative medicine industry and or theory basis !!! Further more by implying that the Mayo Clinic has an affiliation with the theory base sounds like they are connected, and I am sure they are not, if so then they may be combined alternative with conventional.! Thanks for killing off my positive thought processes to date.0
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Several comments:
The Lifenet calculator does not take into account the use of herceptin. For that reason, the recurrence rate is much higher than it should be.
I was wondering if leefun was a Burzynski shill. Burzynski no more has the cure for cancer than when he started ripping off patients years ago. He claims he has FDA approval. However, that is misleading.
A application can be filed with FDA to do a clinical trial. Upon receipt, the application will be given an IND (investigational drug application) number. However, the application will then be reviewed, and it will either be approved to start the investigation or will be placed on clinical hold for such reasons as inadequate data,, safety concerns, incomplete application.
A favorite trick of sleazy quacks is to file the application, get the IND number, and then proclaim that FDA has given them an IND. AS FDA is prohibited by law from publicly commenting on the status of an IND, the sleazeball can use this FDA "approval" to reel in more suckers.
So, always take things said by certain doctors with a 100 lb bag of salt. The literature and other information of Byrzyynski is written by none other than the Burzynski Institute.
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sassa - You are correct, Lifemath doesn't include herceptin and I at least the last time I saw results from Adjuvant online it didn't include herceptin either. Also, lifemath is mortality not recurrence. Wish they did do recurrence. Thanks for pointing out the herceptin part to others.0
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I have a friend who I have met through mutual friends that has just celebrated 9 yrs NED. She dosen't post on these boards but thought her story is so positive I will post it.
She was dx at 27, with 6 cm IDC ER+, PR+ Her2+++ 9 Positive nodes and a strong family history of BC, but tested neg for BRACA 1 & 2. She did Chemo AC and Taxol. Unfortunately she did not qualify for the Herceptin trials for early BC as her LVF was to low after Chemo. She took tamoxifen for 3 of years then had a baby. She then went onto zoledex and Arimidex for 3 years, then had her ovaries removed and is continuing on AI's as part of a trial.
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Thank-you for all the POSITIVE stories! Having been diagnosed at 29yrs with HER2+ BC it is so inspiring to see others out there living a long and healthy life. 2yrs on for me and I hope that I can share my story in the future and give others hope too!
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This thread is so inspiring and gives some much needed hope! Question though...on the LifeMath page and Adjvunct Online, I don't see anything listed for TCH. What would a person put in there?
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isthisforreal - My understanding is that TCH is a third generation chemo - is that what others have heard? I just selected the third generation label.0
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TC is third generation chemo. H (herceptin) is not on there because the drug hasn't been standard care for earlier stages that long. I think it became standard care in 2006 for early stages.
So those stats might be a bit low for us HER2+ girls who have done Herceptin. But HER2+ doesn't automatically progress to mets in every case. As we can see there are people here that did not get Herceptin and are NED!
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I had HER2 positive breast cancer diagnosed 10 years ago this coming November. However, I just today found out about the HER2 positive status upon receiving copies of my records. Or maybe they told me but I didn't grasp it. I remember being told that I had a very fast growing cancer. I had chemotherapy consisting of 5-FU, epirubicin and cytoxin followed by radiation therapy. I have remained cancer free so far. My estrogen and progest. receptors were both negative but I did take Tamoxifen, Arimidex and finally Aromasin for a total of 5 years following treatment.
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i just came across this post. This September marks my 10 year NED Anniversary. I was dx when i was 32 with er-pr- Her+3. Tumor was 9CM!! and i had 4 positive lymph nodes. I am still here and never had a recurrance! I even had 2 more children after treatment. I was on a clinic trial with herceptin and only got it for 4 months as they halted the trial because they that herceptin had something to do with a few women that had some heart issues.
Michelle
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Thank you Omaz and Lago. Yes, thank goodness HER2+ doesn't automatically progess into mets. We can truly be grateful for that. It's that as well as the ladies who post on this thread and site to share information who give us much hope.0
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Hi Momma2four, Can I ask you what was the name of the clinical trial called that you where on in conjunction with Herceptin, please, if its OK ! Just out of curiosity ! Im guessing it was not Hormone base as your ER- and PR- status was negative. Its great you found the sight, Im a newy as well...0
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lago, thank you for the info. will look into it.
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thank you omaz. i am new to all this, have never join in a forum before. good to know people like you all surporting each other.
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Hi leefun. How are things going for you?0
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Hi KakaCathFreeSpirit, i did not intend to give negative aspects to you or any one. i merely wanted to know whether any one has try alternate treatment if they have what sort of treatment and what are their thoughts. as far as Burzynski is concern, i only know about him recently when a friend sent me a video about him. i am trying to find out any of you (being in US) know any thing about his treatment and whether they work or not as i could not find any stats and what are the negatives from it especially from people who have try it. if i am in the US i certainly will look into it. i am only trying to find whether there is any other treatment that is not as drastic and damaging as chemo and radiotherapy. even with herceptin one can get resistence to it as with chemo drugs, further treatment will be ineffective. i am glad to hear that many of you have positive comments about herceptin as i have not been able to find many statistic on the treatment. it has only been in used for 5 years in australia. yes, it is normally refer to as HERS2+, there are also HERS3 and HERS4. as i said before it was not my intention to project negatives. if i have make you feel that way i am sorry.
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hi dottiesb, thank you for your comments. my tumour was HERS2+, ER PR negative, 10mm, clear margin and lymph node negative. because of these characteristics and i am in the early sixties i only have lumectomy and no treatment. it is so good to hear that you are now 10 years+ without going through any treatment. thank you for the encouragement. much appreciated.
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