HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   All those dancing with NED (https://her2support.org/vbulletin/showthread.php?t=34518)

DonnaD 06-26-2008 10:13 AM

All those dancing with NED (no evidence of disease)
 
Sisters and brothers,
It seems we have had so many losses these last few months. My heart breaks for each and every sister and their families, who have lost the battle to this terrible disease. Many, like Sheila, are struggling with so much right now. It is wonderful to see so many respond with prayers, concern and support. Often I am so overwhelmed with the sadness I can't check the site for days.

My concern is for our new sisters visiting this site. They may find only the sad events and could become discouraged, loosing that much needed hope. With Herceptin being available now to Early Stage BC patients there are many, many positive stories out there. It is only natural to go on with life when you get those good reports and not look back. Sisters like Becky, Jean and others who have not reoccurred, are here to offer their knowledge. I am so grateful to them. Please, please continue. The site needs you!

I think it would be helpful for some long term survivors and others who have not reoccurred to post. I totally believe this site is for everyone, especailly our sisters who are struggling. In no way does this mean we do not feel the pain others are experiencing. But we (I) also need some positive news.

Lets see if we can also hear from our sisters who are dancing with NED (no evidence of disease).

I'll start the ball rolling. I just had my 2 year check up (well almost 2 years, 22 months to be exact). All is well and I am so thankful. I am off to change my signature!
Donna

bashmaz 06-26-2008 10:25 AM

NED 6 years later
 
Hi - in April 2002 (age 47) I had a 1.8cm tumor, 1+ve node, 9/9 grade, vascular invasion, tumor necrosis (my path report was covered with the recurring phrase "poor prognosis"!).
I had a lumpectomy, ACx4, taxol x4, 37 rads (no Herceptin) and I'm doing just fine. My twin sons just graduated from UW (Seattle) last week, my 17 year daughter went to her first prom last month, and while my husband has recently been diagnosed with "probably MS" life is still very good for our family.

Marianne (in Vancouver, Washington)

Melissa 06-26-2008 11:23 AM

reply to NED
 
I am also NED 2 years +
grateful to see my three daughters grow an additional two years
Health to all

atdec05 06-26-2008 11:49 AM

Hi Donna,

What a great thread to start - and sorely needed. I don't post often, but I do check in frequently, and wish everyone the best.

As my sig notes, I had treatment and a recurrence, but as of 9/07 I am NED! I ran the Boston Marathon for Dana-Farber to celebrate my end of treatment, in honor and memory of far too many cancer warriors, and to raise money for cancer research so that we and our children may live long lives cancer-free.

There's a possibility (probability?) I may have another recurrence, but research just needs to stay a step or 2 ahead so we have the options we need to fight this @#$ disease.

take care,

Anna

Lori 06-26-2008 12:03 PM

I am 3 years 5 months past diagnosis and dancing away!

Mary Jo 06-26-2008 12:29 PM

Just chiming in..................Praise God for an ALMOST 3 year NED. The official NED date is July 28, 2008.

Thanks Donna for this post.....yes, you are right, along with the sadness there is also happiness. Sometimes that happiness is hard to pull up though......posts like this offer hope and remind each of us that for whatever reason some of us are NED and some are not. We are united though - with once cause - to support and love each other through it all..............whatever that "through it all" might be. I look at this life as a journey and for whatever reason our journey took the direction it took. We've been blessed with one another to love and support - learn from one another and share God's love with one another.

Just earlier while I was praying and thanking God for all His mercies shown me.....I stop and tell Him how sorry I am for those times I doubt and question Him because it so often doesn't make sense to me and my heart is often saddened by someones suffering. I ask God "Why so many good people suffer" .....but in that same breath I know our Loving God knows the whole plan...the whole picture....so I can only sit by and trust His plan....BELIEVE and love while it is still called "today."

We're all in it together - cancer or no cancer....NED or NO NED....it's a journey until the journey ends. While on the journey we take what comes our way and learn from it, grow from it and support and help each other.

How blessed we are...................

Thanks Donna...awesome post.

Mary Jo

Chelee 06-26-2008 01:13 PM

Donna, I couldn't agree with you more. This thread is SO NEEDED. When I was first DX all I did is search in vain for people that did not recur. My path report showed a very bad prognosis all over it. My onc gave me no hope. The only hope I found at all was the women on this board that hadn't recurred & remained NED. So this is a great idea.

My signature says it all but I am stage IIIA with 5 positive nodes. I could not have radiation and I recieved TCH and finished my yr of herceptin. I am 2 yrs & 5 months out and NED.

Chelee

KellyA 06-26-2008 01:48 PM

Hi Donna,

What a wonderful idea for a thread. I am ashamed to say that I have been very affected myself by the many difficult losses and have dealt with it in the not so healthy way of avoidance. I too remember spending HOURS looking on this site for anyone with similar stats that had not recurred. Not only was I given so much hope by those with no recurrences, but especially from those who had, and were doing wonderfully and had been for many many years.

I just celebrated my two year mark also (May 17), and find it hard to believe at times that I am still here. I have never loved life as much as I do now and can't begin to explain to those around me (who have not had a cancer dx) how my life has changed for the better.

Love, Kelly

karen z 06-26-2008 02:19 PM

Hi everyone,
I celebrated three years out in May, 08.
Best,
karen

Monica 06-26-2008 03:07 PM

Hello,
I am 4.5 years NED and plan to have plenty more!
Best and good wishes to everyone,
Monica

PinkGirl 06-26-2008 03:46 PM

Hi Donna
I have never come to this site looking for reassurance that I am going to
survive this crappy disease. The deaths sadden me and hurt me but I
am never shocked. There are two realities for me: one is that many
women die from breast cancer and the other is that many people
survive breast cancer.

After the losses that we suffered this past year, I am sure there
are members who need to see and hear about all of us who have not
recurred.... this is a very good idea for a thread, especially the timing.

I was dx. in August, 2005. So I am very, very close to 3 YEARS NED.
I too will have to change my signature by adding a year and another
exclamation mark.

Thanks for starting this thread Donna - great idea.

Gerri 06-26-2008 04:07 PM

I'm with Pink Girl - I am a realist. I too recognize that woman still die from this horrible disease, BUT more and more woman are surviving it. As long as progress with newer and better drugs continues to be made at the rate it is now (even faster please!), the number of woman who can say they are NED will continue to climb!

Onward and upward!

NED 2 years, 6 months!

tricia keegan 06-26-2008 04:13 PM

I'm a realist too but having said that I just got the results of my three year out mammo today and it's clear!!!
I've lost three friends to this disease since I was dx so although I'm thrilled at this news I know a recurrance can hit anytime.
But for today,I'm happy!

Sherryg683 06-26-2008 06:03 PM

Diagnosed stage IV, almost 2-1/2 years ago. Scans have been clean ever since. I get my scans again in July, so praying for more good news..sherryg693

Andrea Barnett Budin 06-26-2008 06:28 PM

Getting Anchored In Your Essence
 
Just wanted to chime in, here. I did recur (orig dx in 95 w/ stage IV) -- before we all knew about her2 and herceptin.

I was lucky in that I recurred, into the liver, in august of '98. BECAUSE HERCEPTIN WAS FAST-TRACKED BY THE FDA AND MADE AVAILABLE TO ALL MET BCrs September 28, 1998!!!

And here I am. Just had my every 6 mnth scans and my annual mammo/sono -- and I AM STABLE!!! Sticking w/my Vitamin H ev 3 wks. Joyful, feeling blessed, deeply grateful.

In '95 I had no grandchildren. 1 married daughter. I lived to see my baby married. And to greet 5 new Souls to this world! Life is sweet. Stay strong, brave and determined... Be well. Stay positive and connected to your Spirit at all times. It will guide you.

Always sending loving energy to y'all...
Andi http://cdn-cf.aol.com/se/clip_art/gs...mals-butterfly

Lori R 06-26-2008 06:38 PM

Although my prayers are with everyone that they won't reoccur but I honestly believe that all is not lost if you do.

After being diagnosed as Stage IV in October 2007 I am pleased to say that I have been NED after only 3 cycles of Taxotere + Herceptin. I JUST returned from my check up and have now been NED for 5 months.

I plan to just keep on adding up the months!!!

I also GREATLY appreciate the sisters on this site that are participating in the DM1 trial and share so freely about their experiences. Their first hand knowledge give me further hope that if things change, there are a lot of options remaining.

Thanks to everyone on this site for being so inspiring!!

Emelie 06-26-2008 06:59 PM

I'm still here too!
 
I am officially 15 months out and doing great!! Living and loving a life I did not think I would get to see.
Thank God for this site and the modern marvel of science.
I have been trying to log in, but have not had much chance.
I am here to say, keep going just like the Energizer Bunny.
We have all taken a licking, but we keep on ticking!
Emelie

Montana 06-26-2008 08:11 PM

3 years, 8 months, all is well.....

Linda 06-26-2008 08:14 PM

I agree. I know how much I clung to positive stories when I was first dx, and there are a lot of us out there.
I'm over three years from a really knarly diagnosis - very large tumor, a pos node after chemo, 9/9, hormone minus, high high scores on all the bad prognostic factors.
Over 3 years later, I'm fit and busy. My twins have survived (thrived) their first year of college and all is well.
Linda

ElaineM 06-26-2008 09:37 PM

All those dancing with NED
 
Nine and half years after my original diagnosis I am very grateful to be still alive and kicking and getting older.
One year after my diagnosis a surgeon told me I had six months to live. He even wrote it in a letter to my oncologist. I remember thinking "That is not going to happen to me" when the surgeon was still talking. Thank goodness it didn't happen.


All times are GMT -7. The time now is 05:15 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021