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- - My News (https://her2support.org/vbulletin/showthread.php?t=62576)

I'm sorry that I haven't been posting a lot. I've been busy, and filled with chemo-brain confusion. I will be speaking at SXSW 2015 on the topic of what we need to cure breast cancer, which is very exciting. We''ll be taking twitter discussion during the event so hopefully some of you can participate - I'll give you the info before I go.

But I'm writing to share my news with you.

I had a PET scan this month, and I am still NED.

Thanks to Perjeta, I've been NED for a year now.

I honestly believe I am never going to see breast cancer again. I know that isn't the way it works, but 2% of women get a cure even with mets. I feel like I'll be in that 2%.

I think it's Perjeta, it's a miracle drug.

I'm still in treatment and of course, nobody knows when or if I should stop, including my amazing oncologist. He did suggest I take a 2 month break and I'm thinking I will.

For those who don't know me, (and why would you), it has been a long road.

I was diagnosed in 2009, had the typical treatment of mastectomy and TCH, found mets in 2011, and have been through a lot. I have done 7 different chemos to date, 3 targeted therapies and an antihormonal. I had a liver resection where they removed half the liver, I had RFA on it and then I had SBRT. I went septic and nearly died, and I spent pretty much the past 4 years as a sick person. I was too sick to get more chemo so in desperation, my doctor decided to give me perjeta and herceptin without chemo, off-label and as a 7th line therapy!

It worked.

Now I am rejoining the world of the healthy. I've joined an exercise group with trainers who are certified in cancer patients, and while I am the weakest one there, (standing for a few minutes was difficult) I am determined to continue. I will workout 3 hours a week until the end of April and then I have the chance to train for a 5k if possible. I am not sure I'll be able to work again (and who will hire me) but maybe I can volunteer and become useful. I've spent a lot of time sleeping.

It is going to take some time to train my mind not to be a cancer patient anymore, and to think of myself as having a long life again. When I was sick with active cancer, I thought only days ahead and would plan nothing. I played the cancer card. When I heard NED for the first time, my perspective opened up and I started thinking months ahead. This Christmas, I even thought about what kind of tree I wanted next Christmas. I stopped mentioning cancer. Now that I have this news, I am thinking of my 60th birthday five years away, and weddings and grandchildren who are not planned and my son's graduation for Caltech in 3/12 years. The future has opened up to me again.

I am writing so I can give those of you newly diagnosed with mets some hope that it is possible. I'm the last person I thought would get this news. But here I am. Perjeta was not out when I started treatment, and it has saved me. There are new, promising treatments for all types of breast cancer now, including HER2+.

Even if it comes back in a year, I have this wonderful time. I want to do good in the world. Hopefully, my story can be a start.

*hugs*

Breeze,

Good to see you again and so glad to hear your continued good news!

Thanks for updating those of us who DO know you and offering such hope to all of us!

Here's to many more years of NED-- I'm betting on you!

Great news, Ann! Perjeta is really a wonder drug.

Echoing Rhonda - many more years of NED :-)

Janis

Ann, Your post brought tears of joy to my eyes! I also benefitted from Perjeta, but at an earlier stage as a first line tx. I am thrilled that it has given those who have mets/higher stage a chance at a quality of life and even hopes of NED. I was most touched by how you described the return of your hopes and dreams. You so deserve that. Thank you for sharing. Linda

Sooooo happy for you! May you have many more years of health :-)

Well, you already know what I think, but I don't mind repeating myself:

Woot!

Sometimes it was obvious that sheer will was all that kept you going, but I never lost hope because you never stopped fighting. You're a force of nature, Ann. And I'm glad to see that you're over the utter bewilderment that set in when you realized NED might be settling in for the long haul.

Amazing to watch--from beginning to this new beginning--and a beacon of hope for every woman who receives the news that none of us wants to hear.

Well done.

Rhonda

Wonderful news!!! So happy for you!!

That's amazing! You've been through so much and it sounds like with a great attitude. Cancer is a scary thing to have to deal with and your story gives others hope for a good outcome. Thanks for sharing. I'm very happy for you. :)

Ann so happy to see your post. You have gone through so much and gave us the laughter, sadness and truths on your journey. I am feeling like you are a flower that has just opened it's petals again reaching up to the sun and you have a whole plan of living ahead of you. All the best. Lois

Thanks for sharing the great news, Ann. I have enjoyed reading your journals in the past years. Hope to see you more often on the Her2support Forum. Many of us can benefit so much from your experience as well as your humorous writing (style).

Congratulations again!

Thank you for your kind words. And for those of you who have followed my story and posted on my Facebook page and blog and shared your own experience and thoughts, you have given me more then you will ever know. The fact that people were out there rooting for me meant all the world, and helped me face each day. I'll never discount how much that meant, and continues to mean.

I feel like I'm giving an Oscar speech. Lol. But it's true.

I want to say "never give up". But that isn't a statement that is real, the truth is sometimes we have to give up some things, including treatment. But we don't have to give up the things that I uktimately discovered were the most important things: people, family, sunshine and hummingbirds- love.

Thrilled for you Ann! Miracles can happen! Hip hip hooray for Perjeta! (and Herceptin, of course!)

all the best
caya

Thank You, Lord! Great to hear from you, Ann, especially with your great news! :-) Penny

Anne so happy for your good news. I follow your blog faithfully, it is the only one Ive kept up with 3 years after this all started. Your story is important to so many women battling this disease...you have been through so much and just when you thought everything stopped working an new therapy has done the job I am so happy you are having a nice, long dance with NED!

Ann, you already know how thrilled and happy I am for you, but I'm saying it again now. :)

YAAAAAY!!! I am so grateful to have you and everyone else on this board as friends and support. You support all of us with this fantastic, wonderful news!!

So good to see you here!

Carol Ann

Wonderful, wonderful, wonderful!!!!!!!

Thanks for sharing your story, congratulations on being NED!!!

Ann, I have to say it: I told you so! It's been a long road all these years, and you are ON TOP. YOU DID IT. So very happy for you, it's like your life was handed back to you on a silver plate, isn't it?!
What great news upon my checking in...
Yours
Karen

Ann,

I was just thinking of you the other day!! So glad to look in and see your continued good news. You go get life and enjoy xx