Looking for Her2 Positive survivor stories
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VLH, HER2 used to be very difficult to to treat but with the 2 new,drugs, herceptin and perjeta they are getting great results . I wish you well as you go through your treatment. Love, Jean
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Thanks, Jean. :-
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VLH just wanted to let you know I was stage IIB triple positive with a 5.5cm IDC tumor. In September it will be 6 years NED. Tomorrow will be 6 years since my official diagnosis.
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CONGRATS- Denise-G...want to be in your shoes some years down the road. Thank you SO much for sharing!
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Fabulous, Lago!
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good on you Lago for me now day 5 after 1st chemo and I'm only beginning to realise that I have a marathon ahead of me. Feeling pretty lousy but soldering on.........
You ladies are an inspiration.
Helen
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HelenWNZ Indeed it is. Just one day at a time, you'll see the light at the end of the tunnel soon enough. Accept all the help offered to you. Hang in there we're all here to cheer you on!
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Lago, are you on an AI? Love, Jean
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I'm so happy to see your reply. I'm HER2 positive 3+ and I get my port today. I start chemo Monday. This is all so scary and surreal! I am so happy to read survivor stories of people with the same diagnosis. I never in my life thought I'd envy people with cancer, but I can not help but envy people who are HER2 negative... If that makes sense... I'm glad I joined this group. I have all kinds of nervous energy. I'm leaving for the hopital in about an hour.
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nbarkach, I know the Her2 is scary but what keeps me calm is all the positive studies from the Herceptin, Pergeta etc trials. They seem to really work. These are all wonder drugs that weren't around years ago.
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Here's how my oncologist put it: fifteen years ago, HER2+ was the last thing anyone wanted to see on a pathology report. Herceptin, and now Perjeta, have been absolute game-changers. They're magic juice.
HER2+ is really scary, yeah. But I'd take it over some other pathologies any day, given the targeted treatments we have these days!
To those of you just starting treatment: you can do it. Be prepared for side effects but don't expect them. Stay hydrated!
My cancer-versary was July 6 (my surgery date--the chemo and radiation were just insurance). One year NED.
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nbarkach -- I don't think you need to think that way. When we found out I was HER2+, my MO actually said, "I see that as a good thing". It's because we have herceptin AND perjeta and they are wonder drugs. Also, aggressive SUCKS, but it also usually means it responds to chemo better.
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zjrosenthal I was on AI for 5 years ending this May. My MO originally wanted me to do the 10 since she considers me high risk for recurrence due to tumor size but due to SE (walked in with a broken bone in my foot in a boot yet I'm on Prolia) she wanted me to stop…subject to change if the studies say I would benefit. I am still doing Prolia
BTW yesterday was my 6 years from diagnosis date.
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KateB79 Woohoo one year! Today was my first zapping of 28. the machines more than anything make me nervous. But one down, 27 to go!
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Thanks for the info. Lago.. Congradulations. Love, Jean
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My MO told me that before Herceptin, risk of recurrence for HER2+ was 30-40%. With Herceptin it went down to 10%, and with Perjeta it has gone down further to single digits.
For me, ironically aggressive did make it very responsive to chemo. I had multiple tumors, cancer in the lymph nodes, grade 3, ki67 80%. Had chemo first before surgery and it got rid of absolutely everything. 6 months ago I would never have thought that possible.
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Thank you all for sharing your stories!!
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I'm one year on from HER+ breast cancer diagnosis. Feels good to be one of the "survivors" (my last herceptin coming up).
By the way ladies, I agree with the person who said that because of herceptin and perjeta, HER+ is no longer any worse than HER-. Look at this Dutch study - survival rates exactly the same since these wonder drugs came in:
http://www.bmj.com/content/351/bmj.h4901
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It'll be 11.5 years soon. Planning on many more to come, but grateful for each and every single day at hand. Dx stage IIIA (high grade, node+, ep+, her2+). I had my mastectomy surgery 1/27/05, followed by AC/Taxotere chemo and 1 year of Herceptin. Refused Tamoxifen due to possible side effects Vs benefits, as I saw it.
Along the way, there have been quite a few scares, but I'm fortunate to be relatively healthy thus far.
I have eliminated meat from my diet and have eventually become mostly holistic in my preventative approach (won't take any meds, which makes it hard to keep a PCP) and try to focus on boosting my immune system because I just cannot afford to lower my guard at any point.
To those recently or about to start down this road, you can definitely do this! Not only can you do this, you can thrive while doing it! And before you know it, you will look back and see how strong you really are and how much you've overcome. We are amazingly strong, even if we are scared, even if we stumble, even if we question it all, or want to stop at some point, just keep taking one little step after another. Look in the mirror and remind youself that you are more than those few pesky rebel cells, and that the good cells outnumber those cancer cells by far!
I tried my best to keep a gratitude journal, which carried me through some of the darkest days. I would force myself to find at least one thing to be grateful for, and before I knew it, I had a list of things and names to be grateful for even on those darkest of days, which helped recharge my battery again and again.
I don't post often, but I am very grateful to those who have constantly provided encouragement and knowledge to all of us. I remember finding this site as my hair was starting to fall on my keyboard 2 wks after the first treatment, and feeling so inspired by the success stories of others. In time, I sort of moved on, although I've never really stoped caring for others and sharing with them, albeit not online.
Sorry this is long, just wanted to share with you all.
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Pinkest, thank you so much for sharing your words of wisdom. I am just starting out with my treatment and I am feeling pretty lousy. You are an inspiration to us all fighting this battle and you gave me the hope that I have been desperately seeking.
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Maya I'm right there with you! After my re-excision in June, and ALND, no disease. Ironically, the more aggressive the cancer, the better response to treatment. I'm in radiation now, and still on Herceptin, and eventually Tamoxifen, but at this time I consider myself on the other side.
Congrats MsBrompton on your last infusion!
Pinkest thank you for sharing, I still look at stories like yours for inspiration and hope.
Hang tight cwhitney, you'll see that the meds will do its job. In the meantime take care of yourself.
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Cwhitney: Be gentle with yourself, allow yourself to rest as much as your body needs, and realize that even if you should encounter any downs along the way, the ups are not far behind. Take one step at a time as you fiercely engage in this battle, and let others be of as much or as little support as YOU need. Always express what you feel or need in a way that is natural to you, your body already has a battle on its hands and bottled up emotions are of no help. (This of course I say from personal experience, without knowing your particular circumstances, hope it doesn't come across the wrong way!!)
We are women, therefore we can raise above anything that comes our way. Even if at times we don't feel powerful, we still are. Remember that a courageous person is not one who doesn't fear anything, but one who, even through the fear, continues to forge ahead.
Rooting for you!!
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PinkEst, you lifted me me up today with your words. My heart is swelling! Thank you!
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I was surprised at the figures shared regarding Herceptin. In looking at the Predict tool, it's only a difference of 3 percent in the first five years for my age and tumor profile. Perhaps neoadjuvant use is producing better results than reflected here?
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I looked at your link, in the explanation of their model they say "The benefit of trastuzumab is based on the relative risk reduction of 31 per cent in mortality up to five years in published trials." I also saw though that the model is based on old data, pre-2003 and before Herceptin and Perjeta were available. They are guessing at the benefit of Herceptin based on trials but not with data from real women who've used it.
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Thanks, Maya15. I knew the information was before Perjeta was available, but haven't been able to find a comparable tool that is more current.
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Yeay PinkEst. How many of us will print out your positive words and stick them on the door of the refrigerator?
LOVE this forum. Strength to those just starting out.
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I don't know how accurate the Predict tool is. My MO gave me better odds not even considering Herceptin. Herceptin only added about 2% increase. I don't believe that's accurate. BTW I will be 6 years NED August 31st this year.
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5 years NED for me this month. I had a complete response to FECD and am highly estrogen positive so I'll be in some sort of hormone therapy for 10 years.
When I was first diagnosed I thought 5 years was a lifetime away but it really did go fast. I know that there is still a risk of recurrence ( my MO tells me every time I threaten to stop tam ) as I was highly ER positive but I'm going to relish this milestone nonetheless !
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I'm coming up on two years since diagnosis next week and so far, so good!
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