Looking for Her2 Positive survivor stories
Comments
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thank you all for posting the good news!0 -
3 years and 7 months for me. Still NED!
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7 years, 10 months here. I did Herceptin for only 9 months, following the FINHER study.
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lago - I'm the one that got the delicious cookie recipe from you. Congrats on your 5 yrs also!!
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New research study: being HER+ no longer means poorer chance of survival (so long as take Herceptin)
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just passed my 5 years from my last treatment. Still on tamoxifen, but going strong. I was dx in 2009, did a 4 month clinical trial, double mastectomy, 6 month chemo, radiation then a year of herceptin. It was a long hull, but I am here and grateful for everyday.
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Thanks for the encouragement Gigi. Glad you're doing well. I had a similar diagnosis. Love, Jean
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The latest studies on HER2 survival are very good. Even for those of us with large tumors and nodal invasion, 8 year survival is around 75%.
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I haven't been on the forum for a while but decided to check in and tell everyone that 4 years from diagnosis, I'm doing great.
I agonized and argued and fretted over every step of my treatment. Like the lady in the Time Magazine article I argued for watchful waiting when I got the post biopsy pathology report of DCIS, but was discouraged by two breast surgeons from taking that approach. I'm sure glad they won that argument as post surgery the pathology was IDC, part ER/PR- HER2+ and part ER/PR+ HER2-.
I argued for no chemo based on the size of the IDC and got talked out of that position by my brilliant oncologist and the promise of Penguin Cold Caps. They rock!
I've learned a lot about BC since then and I'm sure glad that cooler heads than mine prevailed.
My only complaint is that with the lack of estrogen due to Tamoxifin my skin has gotten too lazy to keep my fat in place. And I have more fat which I'm convinced is Tamoxifin fat so don't try to tell me otherwise.
The thing I want most to communicate to those of you in the midst of it is that BC will someday be just a memory instead of the thing that drives your life. I seldom think about it unless I have a backache or strange abdominal pain. I tell myself to stop being a ninny and move on.
It is so much a part of my past that I just realized I'm a year late for my yearly appointment. In my defense, we have moved but I know.....I have a call into a new oncologist.
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THANK YOU TheLadyGrey! Same stage and almost same profile as me, but 4 years on. Your message means so much.
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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Is there anyone who did not do Herceptin or chemo and is still with us - I will be a four year survivor in Feb. with HER2 Positive - ER+ and PR- - I am doing alternative but did have bilateral mascectomy.
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Barbie my oncologist told me that my chances of not needing further treatment after surgery (chemo, Herceptin, AIs) and being alive and NED the 10 years following was 40%. So it is possible that you might not needed that treatment and your healthy lifestyle is working for you. with treatment I have an 86% chance remaining NED in the subsequent 10 years. I'm still NED after 5. My tumor was just to big to take the risk
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5 yrs and 8 months post diagnosis!!! Still NED, and seeing my oncologist next week to discuss staying on the AI for another 5.
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Thanks Linda, very encouraging. Congratulations. Love, Jean
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Hii can i just ask to the long term survivors! Did ull take tamoxifen after treatments ended for 5 years?
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Congrats Lago and Linda!
I see Linda was on Aromasin. Lago, did you take an AI? My MO wants to be put me on one after I finish Herceptin in December. Not looking forward to this. As I already have body aches and joint pain leftover from chemo and or Herceptin. I have had 2 estrogen + cancers in last 10 years so it's really in my best interest.
Patty
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I love this thread!! I was recently diagnosed and have found it so helpful to keep coming back and reading all of these success stories!!
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PMR53 I was on Anastrozole (Arimidex) for 3.5 years then switched to Exemestane (Aromasin) due to side effects. I only took a 5 week break between the switch. So April 2016 will make 5 years on AI. My MO keeps saying she wants me to stay on for another 5 years. We will be discussing in April.
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I'm just over a year from surgery and chemo - 5 months from finishing my year of Herceptin. It was a long year, but I made it!
Liz
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Lizmom-
Welcome! And thank you for sharing, congrats on your first year!
The Mods
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hi
i was dxed in 2008 coming up on 8 years. I did double Mast, 1 hear TCH and 1 year femora...i didn't do well with anti-hormonals and quit them. However I am in Menopause now.
I have not been on this site in over a year as I don't think of BC anymore. I will tell you the first 5 years I was on consistently and this site became my life line! I think the key to my survival has been getting my mind in condition..less stress, getting rid of toxic people, situations and living each day out loud.
I climbed Mount Kilimanjaro this year and it was alway on my bucket list but fear held me back. Now I go forward instead of bracing in fear. Life is beautiful. Hang in there..all of the survivors are out there and living large..I promise!
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I don't visit this site much anymore but I know I hung on to positive stories when first diagnosed so here's mine.
I'm at 4 years since diagnosis and remain NED. In one year, when I reach 5 years, I've been told by my Oncologist, I'm out of the woods so to speak.
HER2+, Estrogen Negative, Stage IIIA, 11 positive lymph nodes
Living with the fear does get better. I can only speak for myself but by year three I was a "new normal" and no longer living in complete shock and fear.
Hang in there!
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Thanks, Alice. Very encouraging. Congradulations. Love, Jean
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7 year survivor
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no I was er pr neg. had 64 weekly herceptin, 12 taxol weekly, and 4 AC every 2 weeks. Ten year 5 monthsurvivor as of 4/19
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Did any of you Her2 +++'s out there have to stop your Herceptin due to heart failure? I only got 7 rounds of it before the onco called off the big guns and I am wondering where this puts my future prognosis. Also was supposed to get 6 T/C infusions and they stopped me after 4. I did manage to finish the 36 rads, though. Somebody was saying (above) that Her2 can come back anywhere in the body - so why do they only check our breasts? Does this explain why my onco refused to let me ice my toes/fingers/head?
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Blownaway,
Your picture looks young, and being younger raises the risk some... I was 52 at time of dx in 2002, with a 1.9 cm tumor, and never had any trastuzumab (just CAFx6 and rads and a short course of tamoxifen) and I've never recurred. I'm just one comparison out of many, but my guess is that the risk to your heart probably outweighed the risk of recurrence for you. Cardiac function also can improve after taking time out, and maybe he is trying to see if yours does or not.
A.A.
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Blown,
My stats seem to be the same as yours. I was treated at UCSF and got 12 wks Taxol?herceptin and am having my final herceptin on Friday. Fortunately I didn't have any sort of heart issues but my MO told me that he would stop treatments if I did and he said since my tumor was only 7mm no nodal involvement he wasn't worried if I couldn't get all the way done. There was nothing said against icing at UCSF in fact they were the ones who told me about cold capping and encouraged me to use a cold cap to prevent hair loss. I never iced anything else but took L-Glutamine twice a day and no neuropathy issues. My dr who is co director of the UCSF comprehensive cancer center told me that any mets to the scalp are highly unlikely in the area of less than one percent.
As to HER2+ coming back, any of the varieties of breast cancers can return in any number of places in the body.
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Blownaway I think there's an ongoing trial comparing 6 months of herceptin against 12 for early BC. See here http://www.cancerresearchuk.org/about-cancer/find-...
So if you've had 7, that's nearly 9. I suspect in a few years we'll all be offered 9 instead of 18.
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