HER2 Positive-anyone 10 years out?
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sassa- thank you for the info on FDA procedure. excuse my ignorance on US FDA procedure. according to the video Burzynski has gone through phase 1 and phase 2 of the FDA procedure and about or started phase 3, does this mean passing phase 1 or 2 already? if so is he allow to use his treatment?
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momma2four- thank you so much for story. it is so encouraging for me. thank you all for being so supportive. hope i have good outcome that can encourage others in the future.
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hi omaz, i was diagnose 2 years ago and chose not to have any treatment. now it has returned. this time it is a bit bigger 10mm one side and 15mm the other side (not completely round). i had core biosy on thursday and yesterday i had CT and bone scan. i will know the results next friday when i see my doctor. hope it has not metastacised else where. i think my doctor will insist treament. i am a bit scare of the side effects as i am not young and strong any more. thank you for your kind comments and support
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Hi leefun,
You don't be scared about treatments. Hardly any lady from BCO hasn't got it, but all found it doable and really protective. Today there are a lot of premedications to ease the SE's. I was 70 and the DRs mentioned it's necessary. Today I'm thankful for doing it.
Best wishes
Usha
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kakacath- I cannot remember the name of the trial. There were 3 arms. One, no herceptin, one herceptin AFTER taxol for a year, the last herceptin WITH taxol and continue after. I was lucky and got the taxol with herceptin but then got cut short. Again, I have had NO recurrance! stay positive. do NOT look at statistics...they are typically outdated. And those stats are NOT YOU!!!
(((HUGS)))
Michelle
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leefun - I am sorry to hear that you have to go through this again. When you get your pathology report from the biopsy that will tell you a lot. Hang in there. If you have to have treatment you will make it through! (((((hugs))))0
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hi omaz,
thank you so very very much for your encouragement. you have make me feel much better. thank you.
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hi slousha,
thank you for your comments and encouragement. it is good to hear other people's expereince and gone through the process. i was feeling a bit depress the last few days, your comments has strengthen me. thanks a lot.
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Thanks Michelle- reading your story has done so much to lift my spirits!
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Everythings going to be alright!!!!!!!! I believe we are healed and will die of some other god awful thing.
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Thanks for asking the 10 year out question. Even though we are all different it is nice to see that those of us that are ER+PR+ and HER2+ can make it past the first five years. I needed to read that. It is very encouraging and has given me hope I can beat this! I think I am going to take the advice of bre 'My advice....don't get too wrapped up in the fear of recurrence. Live every day to the fullest and don't waste any time frozen in fear of recurrence. It took me a year to learn that.'. I dont want BC taking anymore from me then I need to give. recurrance is a huge fear of mine. Thanks for the advice!
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For sure we all know that is the Biggest of fears is recurrences, but as long as you know you are doing the best you can, and treat your body with respect and feeding it with what we need to build the white cell count ready, and especially for battle !!! Those Lymphocytes, the virus detectors are always doing over time, god they need a holliday !!! Keep on keeping on to you all...
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Hi All
I am 9 years from diagnosis. I was lucky enough to be on the HERA trial, I had AC & Taxol, Chemo, Rads and got the arm of the HERA trial were I got Herceptin on the 3 weekly regime for 1 year. Not at your 10 years out yet but I'll come back next July and let you know how it feels! So in 2002 in Australia and elsewhere around the world they were testing for the HER2 receptor and several trials were being conducted worldwide to see if Herceptin was beneficial for women diagnosed with early breast cancer with the over expression of the HER2 receptor. Took a while for this to be covered under the PBF (Australian Pharmecutical Fund) but it is now the recommended treatment and I am very proud and grateful to have been apart of this trial. I am guilty of not posting often, but I do like to drop back in every so often just to let you know we are out there:)
Cheers and best of health to all Sharon x
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Aussie-Sharon - Congratulations and Thanks for doing the ground-breaking trial! It paved the way for those of us who followed, you were brave!!0
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Thats great news Aussie-Sharon ...very encouraging. I would love you to post on our Aussie forum and let the girls there know.I think you are a member?
There are lots there on Herceptin who would find your post very uplifting.
hugs
jezza
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Six years since I found my lump on September 4, 2005.
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Hello,
I just joined this board. I was diagnosed with breast cancer this past July. I am 40 years old. I had my lumpectomy on Aug. 23. I was told I was grade 2, 8 nodes clear.. I just got the call from my oncologist that I was found hormone+ and HER2+. My husband and I meet with my oncologist Tuesday morning. I am feeling bummed about having to face chemo.
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Also, when someone writes NED, what does that stand for?
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NED is no evidence of disease.
Sorry you had to join us but Herceptin is a miracle drug. Chemo isn't fun but you'll get through it. October 5 makes 1 year since my 1st chemo. Wow this year really did go by fast. Once you find out what cocktail you are getting be sure to check the boards. The women here have lots of tips to get you through this.
The hair thing will suck but it does grow back.
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Hi all, I am so glad to find this site. Recurrence, particularly metastisizing is the thing I am having the most trouble moving on from. My oncologist, whom I adore, tells me in his Indian accent that "you just need to chill out" He told me this at my first interview with him. My husband said he watched me cross my arms and thought "uh oh, she's gonna blow." But....he had such a cute grin when he said it, I forgave him. Now he tells me that all the time and just laughs.
Leefun-while I am following mostly conventional medical therapies, I am also very interested in the alternative side and use a lot of supplemets. If you want to know more about the alternative doctors, get Suzanne Sumer's book "Knock Out." She interviews a lot of the doctors doing some alternative things. There were a couple docs I thought were really on to something...at least the germ of an idea. I do think that we are somewhat limited to things that profit the medical community and that drugs that can be developed from plants and herbs occurring naturally, and are therefore not able to be patented, aren't always given the attention they might deserve.
It depends on what day you ask me if the year has gone quickly or slowly. On the chemo front (which I only needed since I was her2+, which was totally annoying), it went quickly with few side effects. On the reconstruction front, I had an infection, had to have the Tissue Expanders removed and just replaced in August. I never expected my biggest problem to be on the vanity side!
I had fully expected to be done by now, with minor tweaking and herceptin the only thing I needed. Instead, I have sen infectious disease docs, my dermatologist for a rash around the new expanders, etc. That part seems long to me. Hopefully, I am on the upswing now.
Again, thanks for posting. I have a hard time going to the her2support.org site because it seems so depressing. I really appreciate hearing about the long term positive experiences.
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I love reading the positive stories. It is 2 years for me, ER/PR-, HER2++++. My daughter was 1 when I was diagnosed. I was sure I wouldn't see her grow up. I no longer feel that way.
I finished my herceptin in Nov 2010. I am now free of side effects. It took awhile for the bone pain to go away.
I did TCH, used the cold caps to save my hair and they worked great. My period stopped after the first one but it just came back this week with a vengance.
It is nice to hear positive stories. It is great to get to the point where you don't feel like this will kill you. It no longer dominates my thoughts. I go to my appointments, oncologist every 4 months and now breast surgeon only every year.
I wish everyone at the beginning good luck. It is truly better from the other side (after treatment) and you will be here soon too.
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Hi, I was diagnosed with bi-lateral BC in oct 2010, had MX on right and WLE on left. Have been told by Onc that possiblity of recurrence is higher in those diagnosed with bi-lateral BC. Approaching my 1 year anniversary with alot of anxieties. It is like waiting for the other shoe to fall off. I now wonder whether I should have had a double MX? Were you diagnosed with bi-lateral BC and did you chose to have a double MX?.
I am awaiting my results for the BRCA tests as my mother has had BC twice. Having said that she is doing great and it has been 17years since her diagnosis (she was ER+ both times).
It would really appreciate your comments.
Thanks
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I had a small amount of LCIS in the other breast. We didn't know exactly what it was but the MRI did indicate that this area could be a problem. My BS said it would have to be biopsied every year. He recommended BMX and I agreed. We didn't even biopsy it. I feel I made the right decision.
But they will be watching you closely so chances are if something were to show up the would catch it at an early stage.
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Hi Amethyst5, thats something I didn't know is that you could test for BRCA gene and be HER2+ !
I had a double mastectomy, the prophylactic subcutaneous mastectomy with no nipple sparing was for the reason you mentioned. The histopathology result findings where wide spread benign fibrocystic disease, but I still don't regret doing it for a moment even though I am aware that it is only a 95% non recurrence in that breast, its good enough for me, no more yearly biopsies and uncertainties from scare tissue left from all those biopsy, the worry was too much stress for me, but then again, every one if differant.
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Thank you for your comments ladies. Because we hear and are told about recurrence when you have had BC, I seem to be waiting for it to happen. I met my surgeon the other day and asked him if he was right in not given me a BMX and he stuck by his decision. I suppose I have to move forward and think positive (which is hard at the moment, being only my 1st year).
Reading all the positive comments on this '10years out' thread does definetly help and give us HER2 ladies much needed boost of hope and moral lifting.
Thank you soooo much.
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Just because you Onc stuck by his decision, does not equate to the right decison. I demanded a prophylactive LMRM . I was poo pooed alot, but I stuck by it, and eventually they agreed. My left breast was loaded with atypia and hyperplasia, a real time bomb.
afterward I was told by the same docs. I was right.
Be your own advocate if you feel strongly about it.
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Hi Guys I am new and I want to know if these ladies who got out from these ordeal can come back on the sites and post what they been doing and if your taking any herbal or none at all after herceptin. please just give us some hope here. Good or bad it will help. celina2011. just on my second cycle of AC
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Celina I just had my last Herceptin 2.5 weeks ago. I do not take any herbal treatments but do take suppliments (vitamin D, Calcium etc.) I eat healthy including antioxidents like berries, exercise daily, drink plenty of water etc. I try to keep my stress level down. August 31st made my 1 year NED. I know it's scary right now going through chemo but it does get better. I feel great.0
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You can have HER2 and test postive for BRCA. I did, and opted for BMX.
It may be rare combination - but it does happen.
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Emily, I'll be two years out this December from date of bilateral mastectomy. Who knows what the future holds . . . but I take a daily multi-vitamin, D3, Coconut oil, Curcumin (not faithfully), vitamin C and a little B12 here and there to make up for what I lose drinking coffee.
I asked a HER2 survivor, who is around 14 years out, if she significantly changed her lifestyle, diet, etc. She said she still has her coffee, enjoys wine, eats reasonably, and just, well, LIVES. I think her balanced approach is a smart one. I stopped worrying about recurrence (I occasionally think about it but don't worry about it) after I lost three friends suddenly last year: two males to heart failure (age 43, age 33; the latter caused by a virus!) and a woman who was like a second mother to me as a result of vasculitis (came out of nowhere). I realized that I'm no different than anyone else--a disease is a disease is a disease. The reality is that even a common illness can be deadly. For some, perhaps, that notion is disturbing. For me the reminder was liberating. Every long-term survivor I've met (a few 30 years out, so who knows whether they were Her2) advocate maintaining a positive attitude and engaging the life we have--living it. I can't think of anything else any of us can possibly do. I'm not sure there is a secret to survival. We survive. We do our best. For me the goal is to enjoy it all as much as I can. May we all find our joy, our groove, and dance the dance. Big hugs . . .
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