Good news update - still NED after FIVE years
 

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.

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,

Great news!!!
 

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.

Thank You
 

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

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

Great news
 

Steph:

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

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

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

Happy Happy, Joy Joy to Steph
 

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

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

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

Wonderful news Steph! Congrats!
________
MARIJUANA BUBBLER

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.

Just in time for me!
 

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

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

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

Congratulations to you. What an inspiring post to read.

God Bless,

Mary Jo

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

Dear Steph,

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

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.