Good news update - still NED after FIVE years

[StephN]

A friend of mine called this week to say that her PET scan was finally clear after over five years of fighting mets. She had Abraxane and Avastin last year and then some bone spots radiated this summer. She is another amazing warrier woman who spent years in smaller skirmishes with nodes and bone, but finally had to call out the big guns, which worked! I am SO overjoyed for her!!!

While she has been chipping away at her mets, I have been NED now for over five years. I HAD to take the big guns as my mets were overtaking my liver fast and furiously. It seems that a number of us here have had good success in clearing our livers of mets - large and small. That is a good trend to see, as I had no idea what my chances were in 2001.

My brain MRI last week showed stable, but the terminology has now changed. No longer being called radiation necrosis, but scarring. The difference is that with the necrosis, it can spread and damage healthy brain tissue, whereas the scarring is just like any scar. It shows where there was a wound and does not change.
This is on the basis of the spots not changing in size for about a year. This change of terminology is more of a "best guess" on the part of my rad onc, since the scans cannot distinguish between tumor, necrosis or scars. It is also based on the info that I am NED in body and markers are rock solid. But I will go with it!

So, I continue on 3-weekly Herceptin. I also must credit R.B. for his extensive input on balancing omegas 3,6 and 9. I have made a very conscious effort to work on that and feel my diet is helping me to maintain NED. I also use very high quality olive oil liberally. The research on that against HER2 was all I needed to hear.

My best wishes to all of the rest of you in active battle against your tumors that your PET scan will also be dark as midnight one of these days soon.

P.S. For those of you who have been kind enough to ask after my dad, I thank you. He is stable, but very weak and still on the ventilator. Thus he is in a specialized skilled nursing facility about 15 miles from me. My mom is still around as she won't leave him. His progress with the therapists is happening, but extremely slow.

[sherri]

Thank you Steph for being a symbole of hope and courage for all of us. LiveStrong,
I miss my trips to Seattle and seeing you.

Big hug,

[Barbara H.]

Thank you for your sharing you excellent news, Steph. Your posts gave me hope three years ago when I first joined this support group and was not in great condition. The trial I had hoped to enter is currently closed but may open again this month. As a result, I continue to stay off all treatment except for zometa. I hope to get on this trial if it opens again, and that it will also put me into NED. Being off of Herceptin is scary, but I think it doesn't hurt to give my body a short rest.

I hope that your father continues to improve.

Best wishes,
Barbara H.

[Donna]

Dear StephN,

Thanks for posting good news - sometimes this home away from home is filled with sadness for our her2 family - it is always wonderful to air it out with the good news too, as it gives us all hope!

Have a great day!

Donna

[Mary Anne in TX]

Hi Steph!
What wonderful, encouraging news from you today! Everyone who posts this great NED news gives each of us hope and courage. Sometimes the battles are tough, and this kind of news keeps us fighting and believing. Thank you for taking time to share your incredible news! May you be our encourager for many, many years to come! ma

[Leslie's sister]

Steph:

I so LOVE to read success stories like yours. Congratulations!

[Esther]

Congratulations Steph! That's great to hear, may you have many more years of NED!!!

[lilyecuadorian]

thank you for sharing ...it help me a lot because you are one of my roll model....seriosly

[Christine]

You have always been asurvivor in my eyes, even if it took 5 yrs. You wil can wear a pink ribbon with an NED attachment. Great idea Huh !!??
I LOVE HEARING YOUR WONDERFUL NEWS.
Hugs, Christine
Say Hello to Dr Gralow

[suzan w]

wonderful news!!! What do you take for your omega 3-6-9's??

[Cheryl44]

I am so happy to hear that you are NED after 5 years. I hope to be able to say the same in 4 1/2. Thank you so much, you are such an encouragement to me.

Cheryl

[sassy]

Wonderful news Steph! Congrats!
________
MARIJUANA BUBBLER (http://bubblers.net/)

[Faith in Him]

Wow. What a wonderful post. Thank you for sharing both your and your friend's incredible story. It is so encouraging.

I'll have to break out the olive oil. Wishing you many, many, many more years of ned.

[Odette]

Dearest Steph,

you give me so much encouragement! You have had a long road in the last five years and this is the best news - every one of us with mets want to hear!

Keep the faith, keep going for yourself and for us,

love,

Odette

[Chelee]

Wooooo Hooooo! That is terrific news for both you and your dear friend. Its SO NICE to hear such encouraging news...we can't get enough it. I am so happy for you Steph. Thanks for sharing your good news with us....its so up-lifting. May you stay on a long road thats never ending of NED. :)


I will keep your Dad in my thoughts and prayers.

Chelee

[TriciaK]

Dear Steph,
Your good news is so very exciting! You have been through so much! I have watched for your posts, and am always so delighted to hear good news. What a warrior and example you are! I hit my third year of being NED in June and I am looking forward to being able to reach 5 years. I appreciated your private email checking up on me. I have finally gotten my username and password coordinated so I am able to post again, and this post to you is my first in quite some time. Congratulations on your milestone, and I'm sending prayers for at least 5 more! Hugs, TriciaK in St George, Utah

[Mary Jo]

Congratulations to you. What an inspiring post to read.

God Bless,

Mary Jo

[lexigirl]

Steph,

You are an inspiration! Congrats on your five years w/NED! I am so happy to read that your friend has beaten some odds herself. I love to read these uplifting stories. Thanks for all you do!

Hugs,
Lexi

[kareneg]

Dear Steph,

I am so happy for you . here's to a lifetime of NED my friend!!!!!!!!

[tousled1]

Steph,

Congratualtions on 5 years NED! That is so encouraging to all of us here on this board to hear such good news. You are an inspiration to us all.

Also great news about your friend! Good to hear that your father is in stable condition as he's been through quite a bit.

You are in my prayers.

[lu ann]

Great news Steph. You have been such a wonderfull role model for me these past 3 1/2 years. I never thought I would live 6 months with mets, but you and many like you have proven we can live a quality of life whether we are NED, stable or in active disease. Thankyou and praying NED never leaves your side. Lu Ann

[AlaskaAngel]

Dear Steph,

From one "5" to another, a toast to your continuing good health, with plenty of resveratrol! I'm hoping you are listening to NPR today (a very interesting segment on wine production in Bordeaux in regard to global warming), and another discussion later today on All Things Considered, so tune in if you get the chance...

As always,

AlaskaAngel

[caya]

Congrats Steph on your 5 years of NED - You are a true inspiration for us all, especially we newly diagnosed gals looking for hope -
all the best, and may you continue your dance with NED for many years to come.

caya

[michele u]

Hi Steph, i'm so happy your doing good!!!!! I miss talking with you, i know everyone is so busy, living i guess!

[Lolly]

Steph, that is so good to hear! I take hope from your friend also, as I am one who continues to battle "small" mets, that one day I will be NED again.
So glad your dad is improving, even though slowly, as that is so much better than the alternative.

<3 Lolly

[Margerie]

Steph,

So good to hear a trifecta of good news- counting in your dad here too!

I wish you continued good health and happiness,
Margerie

[Believe51]

Many women and a very wonderful man, LOL..have recently been told that the cancer has spread to brain, liver, lungs. As the person who owns that wonderful man, LOL (sorry, this post is making me silly with joy) I NEED YOU TO KNOW THAT WE NEEDED TO HEAR THIS POST!!!

Not only is my husband and myself so elated for you, but WE NEEDED THAT!! Thanks for keeping us posted with your journey, it gives us hope and peace to see that this does happen. Maybe next time it will be another person we love. Each NED case proves that this beast can be tamed and that we have just as well as a shot to meet NED as the others we love that experience it.

Thanks for loving us enough to post both good and bad about your journey, especially because I do go over my friends journeys in my mind when I pay tribute to them or pray.

Looks like our prayers are working!!

Waiting For A Miracle...and commanding one soon!!>>Believe51

[IVW]

Congratulations Steph! It makes me happy to hear good news like yours. I will share my story to encourage others with brain mets as I have been doing well also.

It has been 2 years since I was treated for brain mets and I am still NED. It has been 8 years since my original diagnosis. As you read this story please note that I have been having a normal life, except for my initial treatment in 1999 when I needed help with my three children (at the time ages 1, 4, 7).

1999 - At age 39, I was diagnose with breast cancer: 5 tumors in right breast, 20/36 nodes involved, ER+/PR-, Her2+++. I had a modifed radical mastectomy followed by high doses of Adriamycin then Taxol, then Cytoxin (this was a reasearch study). Then a month later radiation for 25 days. Finally I was put on tamoxifen and declared NED for about 2.5 years,

2002 - Tumor markers started going up and tiny bone mets showed up after that. I switched to Aromasin and Zoladex and continued on that for about a year with a very slow progression of the cancer.

2004 - With my ca 27-29 in the 400's and my cea something like 36 and a tiny spot on my liver and maybe my lung, I switched to Herceptin and Navelbine weekly, Zometa every three weeks. In about 6 months, tumor marker were normal, scans looked great. Continued this combo. for 6 more months.

2005 - Cut back to Herceptin/Navelbine every 3 weeks/zometa quarterly.

2005 - Brain mets arrive. One 2.9 cm and two more tiny ones. My symptom was weird visual disturbances. WBR for 21 days while continuing Herceptin/Navelbine. Three months later Stereotactic radiosurgery (same idea as cyberknife) on the remnants of the big tumor.

2007 - Still NED in body and brain. I continue getting Herceptin every three weeks. I get MRIs of my brain ever 3 months, ct scans lungs and pelvis every 4 months along with muga and bone scans. TOMORROW 8/9/07 I get my next brain scan. Wish me luck!

I.V.W.

[StephN]

This is EXACTLY what I was hoping for when I made my post. That more success stories would emerge either from some "lurkers" or new eyes to this board. We know there are more like us out there and by the responses to my post, it does so much good for those either just newly diagnosed or battling with mets.

Those down days can come too often for those in active treatment and these success stories can provide a so much needed lift. Even those of us cuddling with NED have our moments of doubt or wondering when the next met will rear its ugly head. It is a hard yolk to carry no matter what stage we are. Heavier some days than others.

I finally had time to book with my massage therapist for a visit today. Had not seen her in a few months. She also worked over the scar tissue that has developed from my lumpectomy and rads. Those changes have been going on for a while, but the thickening and stiffening of the tissue was getting uncomfortable.

THE BEST NEWS. While writing this post my Mom called. She said that the therapists got Dad on his feet and standing on his own today! This is the first time since early MARCH! Prayers along with some hard work are finally paying off.

[Margerie]

WOOOOOOOHHHOOOOOOOOOOOOOOO!!!!

So happy for you and your dad Steph. The viking marches on..........

[Jean]

Stef,
Love your beautiful news....so happy for you and also happy your father
is doing well also even if it is ever so slow...would you share the product
information on which brand of Olive Oil you are using? I am most curious
and also your diet routine on the Omega 3 6 and 9...I take Omega and of course use Olive Oil but I would love to know your model....esp. since you
are having such wonderful results.

Wishing you continued NED....so inspired by you.
God Bless,
Jean