HER2 Positive-anyone 10 years out?
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Ladies
I think we should return this thread to the header "10 years out", it is helpful to all especially the newbies!! Perhaps we could start a new thread that deals with Herceptin rx...or Her2 protocol??
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Lilah, I will PM you with the info.
mm5: I agree, and thank you! Let's return this to its original intent, which is hope for the future. I should revise the heading to say anyone who is her2+ and no recurrence; you don't have to be 10 years out. Thanks ladies.
tuckertwo (Dianne)
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I am not 10 years yet, but I plan on it! I am 7 1/2 years out. I was idc, her2+++. 8/8 nodes. I was on the tail end of the herceptin trial in 2002/2003.I had all the other treatments, red devil, taxol and 61/2 weeks of radiation. I only had 6 months out of the planned year long herceptin treatment because of heart problems. So even with the half treatment of Herceptin I think it really helped me. I am now 43 and I did celebrate my 5 year cancer free with a party and plan on doing it for the 10, 15, 20 and you get the picture
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nicinboonie,
Wow! Such great news! Thank you for sharing; this is the type of news we want to hear
I pray that we all celebrate 10, 15, 20+ years and beyond and that they are all healthy years.
tuckertwo - Dianne
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nicinboonie --- woo hoo for you!!!!!
Dianne -- thanks so much for the PM!
Lilah
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nicinboonie - YOU made my day, pretty much my diagnosis and I just recently had to stop the herceptin also after 12 weeks with Taxol and then every 3 weeks until the end of December. What kind of heart problems did you have, low ejection fraction, and what did the doctors give you and are you still on those meds? Did you heart function improve?
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Hi, just thought I'd let you know I've just celebrated by 5th anniversary NED after having been diagnosed in Feb 2005, mastectomy, chemo, radiation and 1 year of herceptin (not part of the trials) but one of the first who purchased it privately. I'm sure hoping to make it to the 10year mark and I do come back every now and then to encourage those that maybe just diagnosed or just starting herceptin that there is some light at the end of the tunnel. Good luck to all and make the most of every day of your life.
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Wonderful Mitch! Congratulations! I think I read somewhere that 5 years is a major milestone and that your chances of recurrence drop significantly from here on out.
Cheers,
Lilah
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Congrats Mitch!!
I'd love to say I was ten years out, I'm not but am approaching five years this summer and very grateful for that and herceptin:)
I did have a serious mets scare some months ago but thankfully all was benign!
I was highly triple positive and really hope herceptin has worked it's magic for me and so many other's!!
Tricia xx
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Overexpression would only be in the cancer cell. It just means the cells have more of this protein on their surface. Herceptin circulates in your blood binding to the HER2 protein it finds, blocking it's action and also alerts the immune system to the presence of cancer cells. As HER2 protein is a normal protein, some of the herceptin will bind to other sites, I'm guessing heart cells and sinuses have more HER2 protein? Perhaps accounting for the side effects. I found:
HER2 stands for Human Epidermal growth factor Receptor 2. Each normal breast cell contains copies of the HER2 gene, which helps normal cells grow. The HER2 gene is found in the DNA of a cell, and this gene contains the information for making the HER2 protein.
The HER2 protein, also called the HER2 receptor, is found on the surface of some normal cells in the body. In normal cells, HER2 proteins help send growth signals from outside the cell to the inside of the cell. These signals tell the cell to grow and divide.
In HER2+ breast cancer, the cancer cells have an abnormally high number of HER2 genes per cell. When this happens, too much HER2 protein appears on the surface of these cancer cells. This is called HER2 protein overexpression. Too much HER2 protein is thought to cause cancer cells to grow and divide more quickly. This is why HER2+ breast cancer is considered aggressive
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Dear Blondie45,
I honestly can't remember the diagnosis about the heart. Something about the valves and the heart pumping wasn't strong enough. I don't even remember the drug I took....see it has been too long
I can tell you I only took the heart drug for about a year and I had improvments enough that I have been drug free ever since. 0 -
nicinboonie - thanks for the post and giving me hope that I won't have to stay on these heart meds forever.
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Hi Ladies,
I was a huge poster back in 2007. I was dx'd with HER2/neu+ in Aug. 2006. Anyway, it's nearly April 2010... I'm nearly four years out! No recurrence. Thank God they approved herceptin for early stagers just when I needed it!
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Hi all,
Anyone HER2 positive 3+++ and test positive for either BRCA1 or BRCA2?
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sticar
There is a whole other thread on this topic go back about 5 months it is started by Lexislove, it is more rare for Her2 to be barca1 or 2 but not unheard of there are a couple on this board.
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mmm5
thanks, I will go look for that.
Never expected that I would test positive, as there is no, absolutely no history of BC in my family
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Interesting thread...I'm usually on the life after BC boards but occasionally take a peek at anything having to do with Her2. I'm Her2+ and 6 1/2 years out from DX. I was one of the first early stagers to get Herceptin, actually was able to get it "off study" while the trials were still going on. Had Herceptin once every 3rd week from 8/-4- 8/05. Doing great, knock on wood! Loved seeing the posts above about how if Her2+ hasn't recurred by 5 years out it is less likely to do so!
As far as BRCA, I have an abnormality of undetermined significance: "BRCA1 genetic variant of uncertain clinical significance"..I was the first time Myriad had ever seen this variant. My father was then tested and he had the same variant also. He passed away at the age of 83 after battling cancer 3 times: colon, bladder, then mets to the blood/leukemia..but he had good quality of life up until his last few years.
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as far as I know, BRCA1 is strongly associated with triple negative status. But it's not 100%, there are BRCA1 women out there that are hormone positive, for example.Or Her2+ like soccemom.
But only about 10% or so of all breast cancers are genetically related (that is, most triple negative women will not have a BRCA1 mutation).
BRCA2 women could have all types, that is hormone positive or not, HER2 positive or not. I am BRCA2+, and so is ElaineD for example. I really think it's a misunderstanding that all BRCA mutations lead to triple negative cancer. Not true.
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And I will be 2 years out relatively soon!
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Hello:
I think we can all relate to the fear of recurrence... especially those of us who are HER2+. I was diagnosed in April 2006 at the age of 32 with Stage 2, HER2+ (one positive node). I had a mastectomy, reconstruction, A/C, taxol, and Herceptin for one year. I am happily cancer-free!!
My mother was diagnosed with HER2+ BC in 1993. She had a mastectomy and chemo (Herceptin wasn't around back then). Today, my mom has been cancer-free for 17 years!!!!!
She inspires me everyday, and hopefully she can give comfort and hope to someone else.
Be strong, have faith, and LIVE!
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Hello, all,
I'm two years out from diagnosis (followed by lumpectomy, Taxol/Herceptin, radiation, and balance of the year on Hercpetin). I'll be taking Femara for five years. I had a mammogram today with all benign findings.
I'm feeling well and hopeful. Grateful to have this site where we can share both the good and the bad.
--Ann
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jfrome
What great news about your mother! I am having the same treatment as you did and plan on being around for a very long time.
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Ok, so today I declare I am 5 years out. ( my actual date is in 2 days, but I plan on celebrating BIG time and probably will be in no shape to post anything legible)
anyway, this is particularly for you new ladies, ones that are dealing w/ the sucky side effects and those who are on the roller coaster of emotions in this journey;
I rec'd my diagnosis, by Fax!! yep. 6 week before my wedding to my prince ( truly I kissed many frogs in my life), anyway, took the next flight out and was sitting in my Mom's Oncologist office the next day ( my mom had recently passed from met. BC) the thought was I had a small slow growing tumor, and no big deal, lumpectomy, some chemo , no biggie.
ah.... but no I had a particulary ( bad ass tumor - so said my surgeon) 12 pos node with extension lymph and vascular invasion,ER PR negative , CA in ducts , lobes andPagets of nipple.and NO clear surgical margins after my mastecomy. Oh yeah and the cherry on the cake was I was Her 2 pos! They staged me at StageIIIC , but by a hairs breath . Me being a nurse and having done Onc Nursing took a nosedive and immedaitely went on Xanax ( Thank God )
I was one of the first to go on Herceptin for A non Stage IV dx.
Thank you God for Dr Slamon.
I am here to tell you all, I am well and kicking A**. I married my love after many many yrs, have my own businness, have seen a new grandbaby born,and am living large.
I do torture my breast surgeon at each visit( he didn't think I'd make it, so I tease him about his receeding hairline , Chemo head" )
Those
who were insensitive, uncaring or just plan mean don't have a place in my life now.
It's probably the only " good thing" about this whole deal, is prioritizing is really clear to me now.
I know you all are scared, but try take each day as it comes. The worry, anxiety, does dissipate with time. Every ache and pain will eventually be just that.
Be kind to yourself. We are nuturers by nature, this is the time we need for oursleves, take it.
No one knows what the future will bring,
I have lost 5 members of immediate family members in 12 mos; Most unexpected.
All cried upon hearing my dx , 5 yrs ago.
Now. They are all gone. and i am still here.
Live each day to the fullest as it is a blessing.
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lkc - thank you for that post! I am in the middle of herceptin and have only 2 taxoteres left. The depression seems to be so great this week and I know it is because I am physically low. I really needed your post today!!! I really don't "feel" like fighting today, but I know that when it comes time I will do my next chemo. Thank you also for the exhortation to nurture myself. It has been one of the most difficult things to do throughout this whole process and I feel extremely selfish!!!
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IKC- thanks for coming!!!! and glad you are living large!
Kristy
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IKC -- thank you and bless you!
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HI, My 66 y/o mother has recently been diagnosed with BC. Just got the path report back saying it was HER2+, the mass was measuring 11mm, which I guess translates to 1.1 cm. Don't have a lot of information since it is all just happening, but would like anyone's thoughts on this. She is seeing Doctors at Dana Farber in Boston. The process of arranging consults and appointments seems to be so slow. If this is an aggressive cancer, shouldn't they be moving a little faster to set up her surgery?? Thanks.
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Forgot to ask this in my earlier post, is the HER2+ a gene that I or my sisters inherit from my mother? We are between the ages of 35 - 40 and would like to know if we should be getting ultrasounds or MRI's to look for this?? Thanks for your help.
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I was diagnosed in January, 1999. I am still alive and kicking !!
ElaineM
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Bobird, sorry no one has answered your question yet. You may want to do a bit of fishing around on this site to learn more about Her2neu, but basically it is not known to be an inherited genetic defect like Brca 1 or Brca 2. It's more like a characteristic that some cancers have. It is a subset of regular DNA that in these cancers appears too many times, resulting in too many proteins on the cell's surface which are signalling the cell to keep dividing. So, the cell tries to make too many copies of itself when it divides (resulting in higher grades of cancer) and it grows exponentially (resulting in some big tumors).
Hope this helps!
Hope M.
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