All those dancing with NED

[DonnaD]

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]

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]

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

[atdec05]

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]

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

[Mary Jo]

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]

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]

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]

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

[Monica]

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

[PinkGirl]

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]

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]

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]

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]

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/gstres/anmls/animals-butterfly

[Lori R]

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]

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]

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

[Linda]

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]

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.

[jules9600]

Will be 3 years for me also in Nov. Yeah!

[basset girl]

Great thread to start! 2 years, 3 months NED. I remember when I was first diagnosed I searched frantically for anyone that was NED after a diagnosis like mine. It helped so much to encourage me. I hope this thread will help many others!! May God's peace and comfort be with all of us.

[Ruth]

I love sharing happy news...

this month was my 5 year NED!

I had 10 positive lymphnodes with many of them matted together....

There is lots of hope out there!

Hugs ~ Ruth

[nitewind]

I was diagnosed two years ago this past May, it will be two years since my surgery this July. Everything is going great! No problems. Praise God!

[Kim in DC]

It's hard to believe that I have been back and forth with breast cancer for 10 years, but here I am. I feel great! Tykerb and Xeloda have brought me back to the land of NED!!!! Read my bc bio below

Kim

[Lien]

Great idea! I'm four and a half years, yes that's 4,5 years, out from diagnosis. I didn't get Herceptin, because it wasn't available then for early stage disease, and I'm doing fine. Dancing with NED!

I just read on a Dutch site that in my country 85% of those diagnosed with Breastcancer survive at least 5 years. For early stage the odds are even better. When I was diagnosed the number on the same site was 80% survival. In just 4 years the stats have improved that much!

Love

Jacqueline

[DonnaD]

Just wanted to bump this to the top and say thank you to all who have responded.

You have helped me and so many others regain that deep down good feeling. Lets keep the posts coming!

Thanks again!
Donna

[Becky]

I am almost 4 years out. When I was diagnosed, I never thought I'd see my daughter's graduate. Since then, my oldest (who started college right when I was diagnosed) has graduated college. My middle daughter graduated high school and started college. My youngest who was starting 8th grade will be a senior in high school.

I started my research on bc when I felt my lump in August, 2004. When I had my lumpectomy, I prayed I was not Her2+ and the odds were with me. But of course that's not what happened. I am a different but better person than I was before. I don't take no for an answer and I don't say yes as often as I used to.

I clung to the fact that I could survive and I didn't. I live!

Just remember this: bc is frightening but it is compounded by the fact that before you had bc the only women you heard about were the women who did poorly and died. You never heard about the women who did wonderfully and lived.

More live.

[Jean]

I am now 3 yrs. and 3 months. I can remember clearly
how disturbing the dx. was when I heard Her2, Yikes...
I thought...this is very bad...especially when I found out
that as an early stager I could not have Herceptin.
Well dear sisters new and old never give up...I had
2nd and 3rd opinions and still did my searching..and then I found this site. My second home, well really my first home for a long time, for when I first found the site I could not read enough, I found others who were
thriving and living life -

God Bless All
Huge Huge Hugs to my Dear Sisters
Jean

[romo9]

18 positive nodes - now 3.8 years NED . Great to be here ! Romo9

[Patb]

Two year anniversary this month. Every day is a gift
and life has never been sweeter. My bones ache from
Arimidex but I just keep moving. This site has been
a wonderful, informative, happy, and yes sometime
sad place but everyones support has been a lifeline.
With gratitude
patb

[harrie]

I am 1.5 yrs NED!
Donna, this is a great idea for a thread that you started here!
Thank you!

[Unregistered]

3 years. Woo hoo! I guess you never know but I'm beginning to feel like I'm done with it. Hoping it was a fluke convergence of hormones and genetic defects. Bev

[caya]

I was dx in Oct. 06, by accident - I had a breast reduction and my PS found my 1.7 cm. tumour. This was 3 months after a mammogram and breast u/s showing nothing. I was devastated - no BC in my family, and my DH had just suffered a brain aneurysm in Jan. 2006. (he's fine, we were very, very lucky).
Needless to say, when I started reading and investigating about Her2+, alot of the news out there was not exactly + (excuse the pun). But in Dec. 2006 I believe the Hera trials and others came out with the wonderful news about Herceptin - in Canada Herceptin was already available to early stagers, and my onc. was much more positive.
In Jan. 2007 studies were published relating that pre-menopausal, dense breasted women were 6x more likely to get BC. (I fell into both those categories). This has been my mantra - I tell everyone I meet to get checked, and to demand breast MRIs if there is any question of breast density on their mammos and u/s.
Well, I guess I am 18 months out from my MRM, looking forward to that 2 year cancerversary in Dec. 2008.

Living each day to the fullest - The Dh and I celebrated out 25th wedding anniversary in Oct. 2007 with a big catered party at home, my youngest daughter graduated high school in June 2007, and this month, June 2008, my older DD graduated university. I savour every day, and try not to put things on hold anymore.

all the best
caya

[lkc Gumby]

I celebrated 3 yrs in May 08!
God is good.

[Paty]

I celebrate my two-year anniversary tomorrow and plan to keep counting! God bless us all!

[Mary Anne in TX]

Congrats Paty on 2 years tomorrow!
Two years and two months ago I had surgery with largest tumor 4.5 and 7 of 9 nodes positive. But here today NED and loving life more than ever. Thanks for the knowledge, support, and love on this site for making the journey so much easier! ma

[TriciaK]

As I posted earlier, my 6 months checkup this month shows I am also NED. It will be 4 years tomorrow (June 30) that I had the heart attack that led to the discovery of my her2cancer mets. I would never have discovered it otherwise in time. Herceptin saved my life. As many of you know, it has also been 23 years now since my first BC diagnosis in 1985, so I am a long time survivor of BC and also her2. THere is more hope now than there has ever been. Hang in there, fellow warriors! Our prayers for each other are of great value. Hugs, Tricia

[harrie]

Just for the record, I have 2 very good friends here where I live. Both had bc in their early 40s. One was stage 1 and the other was stage 2 with several node involvements. It has been 10 yrs plus for both of these women! They each had chemo but no herceptin since it was not available.

[Believe51]

.....doing the bump thing>>Believe51

[RobinP]

6 Years Out And Hoping Myself And Others Will Forget That I Ever Had The Big C. But That's A Hard Name To Get Rid Of.

[MJo]

MERENGUE! Diagnosed in November 2005. That's 31 month (more or less). God willing, I will stay NED.

[sassy]

I wrote a really long post the other day--then lost it. So I guess the best thing I can share is that I am NED for 3 years and 4 months, and have every reason to believe I will stay that way. If I don't, there are many, many avenues of treatment and more being developed all the time.

[karen raines hunt]

Hi,
I don't post very often, but had to respond to this post. As you can see from my signature, I had a huge tumor, but I am 3 years and almost 3 months out from my diagnosis and still NED!
Karen

[Vi Schorpp]

and doing well...

[TerriC]

It's been one year and two months since my diagnosis and every day is a gift.

[weezie1053]

Diagnosed in June 2006. Will be NED 2 years in September. Scheduled for an MRI in August, and I will breathe a big sigh of relief to past the 2-year mark NED.

[jones7676]

Great idea! Love to hear those positive stories.....

[newgg]

NED for 4 years ! Whoooopeeeeeee !!! ( actually 4 years and 1 month but who is counting ) What a wonderful thread to find. this is so needed right now. Mostly lurk but had to respond to this. Also feel that this is my info home and celebrate each day as a "present" !! Hope we keep bumping this up for the newbies.
Bonnie

[Unregistered]

Hi everyone, it's Audrey here, checking up on my Her2 sisters using the library computer (we don't have our home computer working at the moment)--just wanted to chime in with my good news--diagnosed in July 2001 (huge tumor, many lymph nodes positive)--celebrating 7 years NED! I feel so lucky to have participated in the Her2 clinical trials back then and to still be here today and looking forward to many more tomorrows... Keep hope alive, there are lots of survivors out there these days!

[Chelee]

Audrey, I knew it was just a matter of time and you would check in long enough to add your NED status. :) It's so appreciated. No doubt MichelleU is off enjoying her summer as is most...but I'm sure she will eventually check in here soon enough too. Because we can't forget her...she is 5 or 6 years out too. :) Wooo hooo to both of you.

Thanks again to Donna for starting this thread. Maybe we can get a few of the lurkers to join in here. I'm sure there are many more we haven't heard from. The more the merrier as they say.

Chelee

[Catherine]

NED for 2 years and 3 months. Just had my second follow up after the end of my 1 year Herceptin. I feel very good and I even think my stamina is returning. This is a very hopeful post that I would have been happy to read when I was first DX.

If a recurrence shows up, I plan to fight it off just like the other warrior women and good souls on our Her2 site. (easy to talk big now that I feel good :)

My oncologist will see me every 4 months. He relies on my report to him, a hands-on exam and tumor markers. I am happy to report that my tumor marker was a 7. (I think he considers anything under 40 to be normal and markers can also give false readings.) I will get a pet scan or similar if I complain of aches and pains and anything new that does not feel right.

Hugs to all, Catherine

[schoolteacher]

Thank all you ladies for the encouraging information and God Bless You all.

Amelia

[SusanV]

Hello Everyone,

Just wanted to add, that I am fast approaching my 2 year celebration (August) Life is spectacular ! And in keeping with the long term NED thoughts. My grandmother was dx in her thirties and lived to be 87....May we all live fullfilling, happy lives. Live Love Laugh. It is never how much time we have, it is how we spend it that matters.

LOVE to all of my Her 2+ Sisters

[DanaRT]

I suppose I could say I am 8 months NED. With no node involvement, it would mean I was NED just post surgery?

I am encouraged by all the positive news.

Thank you,

Dana

[Marily]

(Hi for some reason I cannot turn off the bold on this sorry...) I have been NED for almost 8 years my anniversary will be coming up soon. I was stage IV after finding a tiny lump two months prior.. Her2neu +++ est+++ prog+++ If not for Dr Slamon and Herceptin things would have turned out much differently. I am really looking forward to seeing the upcoming movie being made. I loved the book on the birth of Herceptin.
Marily

[Marily]

Audry, or anyone who knows how to reach her I would love to chat with you on your Herceptin journey... I have been searching for someone who was in the trials... Hugs and live life with love and laughter
Marily

[Marily]

A DARKER shade of PINK

I see the ribbon’s pinkness and I ache to paint it black
No cure for those of us with “METS”, so take that ribbon back.
I watch the crowd race by me, all dressed in running clothes
I have to turn my head away until my sadness goes.

For some of us a darker, deeper shade of pink prevails
Doesn’t anybody know thatbreast metastases still ails?
Our fight continues, day by day, and some times year by year
For many that dark shadeof pink just will not disappear.

So many friends have walked this road, so many left behind
They fought so hard to stay with us, but cancer was unkind.
We have their names engraved inside, their sadness and their tears
Lost sisters with a strength and grit, who fought through endless fears.

We feel the many side effects of hopeful treatment choices
Neuropathies, bone loss and cramps, lost vigor in our voices.
We look back at the years of treatments -- they’ll go on and on
But dancing with a guy named NED is our triumphant song!

So when I see that ribbon pink, and then my own of wine
I must stand proud and wear that ribbon for lost friends of mine.
We’re sure to face more future trials -- results unknown, that’s true
We’re also making waves which may one day help some of you.

So please remember pink is worn to celebrate “stage one”
“Stage four” survivors share a shade of pink -- a darker one.
We pray that someday soon they’ll find a cure for this disease
And ribbons won’t be needed when we’ve brought cancer to its knees.
Marilyn E Daves

I am a reader here mostly lately.. and there always is so much that I learn from all of you..
I wrote this after my "support Group the YaYa's " all passed away after going along for over 6 years and left me the last standing frontiersman.

thank you all for giving so much on this list It brings not only information but so much support!
Marily

[DanaRT]

Marily,

I am touched by your poem.
It's powerful and beautiful.

Dana

[Mary Jo]

Hi Marily,

Thanks for sharing that thought provoking poem. It made me sad as I remember there are so many who struggle and suffer with stage 4 breast cancer. I truly am so sorry about that and like everyone else, wish it weren't so.

Congrats on your 8 years being NED. How wonderful for you.

Oh they "whys" of this disease. That's what always throws me. Why some treatment isn't effective for - why some it is - why some succumb to the disease and others don't. There is no rhyme or reason to this dreadful disease.

Again, thanks for the poem. May everyone who reads it offer up a prayer for those who struggle daily with this disease.

Love & Peace,

Mary Jo

[TriciaK]

Marily, I love your poem! it is really touching and so apropos for those of us who are stage 4. If I understand it right, stage 4 means that the original cancer has mets. My breast cancer, diagnosed in 1985, metastisized to my spine in 1990, then to my lungs in 2004, so have I been stage 4 since 1990? No one told me about stage 4 then, but I am definitely considered stage 4 now, and am NED again. I hope this thread will continue and will bring hope to those newly diagnosed, for there is hope, and we are all proof of that! Hugs, Tricia

[Jackie07]

Didn't mean to interrupt, but, Tricia, you are so inspiring! You give me a lot of hope. You made Stage IV sound like no big deal. Thanks for sharing.

[Mary Anne in TX]

Marilyn's poem reminds me of the "full story" of this disease. It's such a roller coaster ride and for some, one that goes on and on and on. The NED successes bring out the sunshine and gives hope for us all. I went for my herceptin infusion last Friday (took 5 hours there going round and round with the insurance folks, but seems I'm on for the next 6 months) and for the first time ever, Dr. K wrote NED on my chart. Little thing that's HUGE to my brain! I'm so lucky and grateful and prayful for warriors with battles yet to fight. For today I am NED and grateful. Those three letters written on my chart gave me encouragement to up my pace of returning to "normal" life. (Not sure I ever had one) But I continue to pray for those in the midst of battle. ma

[harrie]

I try to always go to sleep at night feeling the gratitude and peace of being NED at the present and also knowing that my family is all doing well. Having had to go through that emotional roller coaster ride in the past has given me the appreciation of what is good right now.

[Marily]

Hi to you all, and thank you for the kind words on the poem.
I just returned to Denver,from LA after seeing Dr Slamon. He gave me wonderful news. He said that in the past two years there have been so many new developments that things are looking very positive for those of us with "Cancer". We need to look at things in a much different way now! He is extremely nice and down to earth, so when He looked me in the eyes with a "BEAUTIFUL" smile and said go off Herceptin, and Aromasin, get rid of some of those side effects (could not promise all would go away) and live your life. There was no way to not believe him. He feels our oncologists out there need to know from the findings the past two years that we have every opportunity to (as he told me) "not die of breast cancer but from something else" ... my husband said like being hit by a bus and he said yes. So I am going to watch carefully for that bus and hopefully as I clean out the meds I will also be able to leave behind the meds I take for those meds and get my body back to a happy one!

Hugs and love to you all...
Marily truly NED and loveing it : )

[harrie]

Marily,
Wow, what an awesome visit you had with Dr. Slamon!! I can just imagine the joy you must be feeling!!! From what I have heard he is the best in the area of oncology and herceptin, so to hear those words from him to you makes it absolutely PERFECT!
hugs and smiles to you.....way to go...
Maryanne

[NanaKaren]

Marily,
I am stunned he told you to go off Herceptin and Aromasin and get rid of of the pesky side effects and live your life. Were your side effects bad enough that they were interfering with your life? I am on Arimidex that makes every joint I have hurt. I am already finished with Herceptin. Just curious why he took you off your AI.

[AlaskaAngel]

ER+, PR+, HER2+++ T1c (1.6 cm)
CAF x 6, rads, 1 3/4 yr tamoxifen
No Herceptin, no lapatinib

Hoping that natural sunshine whenever possible (or supplement), daily exercise, organic foods, attention to balancing omega-3's and 6's including use of ground flaxseed, only sweetener used is Stevia will help to keep me NED...

AlaskaAngel

P.S. Have added red grapes, and white button mushrooms....

[Unregistered]

Hi everyone…Yes I will finally hear the song
“No more chemo … chemo for you
Here’s a salute for all you’ve been through.
And now we bid you adieu…
no more chemo, chemo for you…!!!
I have waited 8 years to have that sung to me and it keeps going on and on in my brain since last night on the plane home…Boy they had better sing it to me lol after all the times I have sung with them for others!!!
I will try to explain why I am coming off my cancer meds. My doctor said I could stop both Herceptin and Aromasin they feel that even if I am very estrogen and progesterone Positive ( I was +++ for both,) with my response to my chemo Adriamycin/Cytoxin, Taxol, and Herceptin, and especially since the large liver metz did not come back ... I am not needing either... He said something to the effect that in trials they have been doing the past two years, they see no evidence that the two needed to be used in conjunction with each other, For me…. the targeted drug, Herceptin and chemo drugs did what was necessary. So the Aromasin is being stopped, My Herceptin is stopped, since I have remained NED this long.
I hope he puts it better in the letter he sends, and I will try to get it in here as soon as I receive it.
I have been NED since the chemo meds. I have had a very good response to them... and the time I have been on Herceptin (almost 8 years,) I have been building up antibodies to the Herceptin and have had some major responses to it ...
Two years ago I saw him ... at that time it was not certain to stop, there was no definitive testing or trials to go on, I could either stop or go on, start Tykerb ?… they were willing to put me on just the Tykerb? but could not tell me what to choose? Since they had no good answers, I decided to continue on Herceptin... this being given (with his suggestion), one dose every two weeks instead of once a week, this was double diluted and run for 2 1/2 hours with IV Benedryl and two extra strength tylenol… since I got an immediate Headache.
I did ok on this, but about a month and 1/2 ago I had a very bad response again and stopped for a 6-week rest and made an apt to see him again. I have had reactions of severe CHF...about 4 years into the drug.. And my ejection fraction went to 21. I am now on lots of cardiac meds. I am up to 70 ejection fraction but am still taking all the cardiac meds, my bp remains elevated.
I have also, since starting the Aromasin, had a fast and large fall in bone density.
After switching fromTamoxifen to Aromasin...In matter of two years I went from a young woman’s bones to my age last year ( I am now 60 lol) and have a bone density scheduled next week to see where we are now.
Last year I had neck surgery, replacing 3 of 5 bones in my spine at cervical 4 5 6( others were very bad, but for the ability to move we could only replace these.) Two grew bone and one cage is empty. Now I, have to go back and get that fixed.
I have lots of pain in legs and lower back and aches in joints. I walk like and old lady if I do not take my pain meds (Ketoprofen) twice a day (which has my pcp going in circles) She is worried about kidney failure. My arms and hands zing hot fiery nerves like lightening bolts, and I get severe numbness from the shoulder through hands especially on left side. Therefore I cannot sleep, I cannot turn my head side-to-side or forward to back because things get worse. I drop things have very bad sense of balance and fall, easily, or trip. With my bones loosing calcium, that is just asking for trouble.
Plus all the other “little things” like runny nose, tearing eyes, crusty bloody nose, mouth sores, bad nails and hair, GERD. Flu like symptoms and severe cramps all over, (Especially the first week after Herceptin), oh and I also crash a couple days, cannot move and do anything even if the world were coming to an end lol…this last time it took me three weeks to be able to get out of bed and be me again.. etc etc etc.
Up until now I have been very happy to have any side effects just to continue to be alive and with my family…but now I have a choice.
So , I am definitely planning that getting off these meds will definitely change some of my symptoms (at least the every two week response to the Herceptin). And that I may eventually grow better bones so my next spine surgery will work, also that my spine will quit disintegrating
and many meds will go away. I hate that big handful every morning and evening…
I was told to take vitamin D, calcium and get out in the sun 15 min a day instead of starting on the big calcium replacement drugs.
Vitamins will be all my med intake in a time in the near future! I eat lots of highly endowed with antioxidants, colored fruits, and vegetables (mushrooms of all kinds included)
I hope this helps to answer your questions. I will definitely try to explain better why off both meds at the same time when I get the letter... sorry chemo brain in use here…. uggg

Hugs and love

Marily : ) definitely dancing with NED.

[NanaKaren]

Marily,
Thanks for the wonderful explanation. Many happy NED days ahead are in store for you. Love, NanaKaren

[KymAustralia]

Hi everyone,

At Jackie's suggestion I am including my update here.

I was dx'd in Nov '02 and enrolled in the BCIRG 006 trial for using Herceptin as a frontline treatment for early Her2 pos breast cancer.

I have now passed the 5 1/2 year mark and are NED and want you all to know how incredibly grateful I am that I was dx'd when this trial was open and that I was lucky enough to be randomised into an arm that received herceptin as I have no doubt that it is why I am NED today.

Love and hugs to all

[Gabrielle]

Hi, this is Gabrielle.

I'm in my 9th year and I remember how I clung to survivor stories when I was first diagnosed.

My story: Dx at age 44, Stage 3a, 9 infected nodes out of 21, Her2/Neu, infiltating ductal, 5.2 cm stuck to the chest wall, left breast.

Treatment: 4 rounds of adriamycin/cytoxin; 4 rounds of taxotere, 25 hits of radiation, 52 weekly herceptins. Mastectomy; prophylactic mastectomy on the healthy breast 9 mos after diagnosis; prophylactic hysterectomy about 1.5 years after dx.

I have no idea why I survived and friends didn't. This disease is humbling and mysterious and I don't have all the answers. I did, as noted, treat it very aggressively. My kids were 12 and 9 at the time and I was driven by a primal maternal need to survive.

I took 5 months off for chemo but after that, continued to work (I'm a CPA). This year, I started studies for my doctorate.

I hope I don't offend those who have done everything I did and more, but didn't have the luck I've had. It's occurred to me that my posts might make others who have recurred, sad, in that that their stories haven't had the happy ending mine has had. To me, the true warriors are our sisters who have passed; I have had a healthy dose of survivors' guilt from time to time.

But for those who are newly diagnosed, I hope you are energized and hopeful as a result of my personal story. In early 2000, I was told by my doctor that without chemo, I would be dead in 2 years. I took every med offered and here I am , 9 years later, hopeful and making continual plans for the future. My children are turning 21 and 18 this summer. My prayers were answered, to see them raised. It's all gravy from here on out.

Hugs and prayers for all of you,
-Gabrielle

[Rozebud]

I haven't been on this site in quite some time. When I was first diagnosed, I was here every day. So remember, for every post here, there are 20 other women who are long term NED but just don't frequent the site anymore.

4 1/2 years out from a stage 3C dx....and fortunately (praise God) was randomized to receive herceptin in the BCIRG 006 trial.

[Jackie07]

Welcome back, Rose. And thanks for the 20/1 analysis. That means a lot to me.

Your travelling pictures look great! Thanks for sharing.

[sassy]

Just want to bump this up.

[Soccermom2006]

THX Sassy! Needed this today ... 5 women on my other site were either newly diagnosed or told they have advancing disease yesterday...so I am very lucky to be able to say...
3 years and nearly 10 months since DX...NED!

[schoolteacher]

Thanks for all your posts. There are times that coming to this site to hear others experiences is all that get me through the day.

I have 3 more TCH treatments; and hopefully, my scans will continue to show me NED. I have only been NED since 4-16-08.

Amelia

[Believe51]

Here is a giant hug for you. Sending special thoughts that are sprinkled with lots of love>>Believe51

[schoolteacher]

Thank you Marie. I needed that today. I am getting ready to go teach a Homebound student.

I hope you and the Mighty Oak are doing well. Have a great vacation.

Amelia

[StephN]

Somehow, I was sure I had put in my 2 cents worth here. Obviously not ...

Had a very busy summer and still going strong.

My fight with this disease began in fall of 2000 - just 8 years ago. Wish I could say 8 years NED and ditch the Herceptin (just got it again today) like Marily.

But I CAN say that I am just a little over SIX years since declared NED after becoming Stage IV. http://her2support.org/vbulletin/images/icons/icon7.gif

I fortunately do not have the side effects that Marily mentioned, but that does not mean that I might not get to the same point after so many years on Herceptin.

Going forward with new information from those who are just a little ahead of me. Really appreciate the sharing that takes place here!

[MCS]

two years here. I miss every sister we have lost as a friend.

i am so glad there are so many familiar faces on this thread with such smiles.

my love to all of you

maria

[Joannie]

What a great idea to start this thread. I am officially 5 years on August 27, 2008 NED. Each day is a gift and one of the greatest gifts I have been fortunate enough to experience are the folks on this website that provide endless amounts of support, information, and prayers. I feel a truly remarkable connection to all those that post here.
Thanks for all that you all do!!!

[BethC]

I am approaching my one year anniversary of diagnosis - wow, so much has happened this year and I am so grateful and so proud of myself for all I have endured! My daughter's 10th birthday is today and I am so grateful to be here to celebrate it! My last Herceptin treatment is next week. Won't miss the chemo place one bit but will miss the security blanket of having an ongoing treatment.

I am hopeful and always am happy to see others NED.

Love,
Beth

[Soccermom2006]

Marily, may I share this poem on other sites?
Thank you!Marcia

[Lori R]

I am hoping this quick note of yet another 6 months of NED provides some hope and inspiration. I certainly read (and reread) these notes and am always filled with hope for the future.

I JUST received the all clear from the results of my first PET scan after 6 months out of Chemo. So far so good.....

I too am thrilled to have the opportunity to participate in life. I am headed out to buy that ski pass (I live in Colorado) for the upcoming season!!!

[Lien]

Hi all,

Had my annual mammo today, followed by a check-up by my BC surgeon: All is well. I'm still dancing with NED and I'm growing more and more attached to him. It will be 5 years next January.

Love

Lien

[jones7676]

While I cannot brag about me, I have a friend who be 4 years out next month NED - she was stage 4 at diagnosis including her liver and several mets and she is doing well.

[Lien]

Dear Barb,

But you can brag about you! You are still here, 5 years after your initial diagnosis. You are hugging a gorgeous puppy in your picture and you are connecting with us over the internet! You are part of our lives and our thoughts. You give hope to others who were just diagnosed. You are fighting the beast. You are one of us.

Hugs

Lien

[mcgle]

Delighted to read your news, Lien.

Mcgle (UK)

[Jinete789]

Hi,

I was dx July this year and pretty scared right now. Having only just been informed of my HER2 +++ status, spent the last few days feeling like have been handed a death sentence, crying, awake all night.

Having read these inspiring posts I fell fully asleep for the the first time since chemo last Thursday, at least believing I have some chance, and that those who have recurrence/mets keep on fighting.

Thanks to all of you for posting your stories. I know it is easy to post when things are down, for support - but the good news is so valuable for us just beginning to get to grips with all of this.

Jin

[Mary Jo]

Hello Jin.....

...and that is why her2support.org is such a valuable "tool" for each of us. Yes, it is a place to post when we are scared, have questions, lift a fellow sister or brother up but it is also a place to come when we need hope because there is plenty of that here as well.

Sending you my prayers for continued peaceful nights sleep "sister!"

Mary Jo

[newgg]

Dear Jin,
Yes, thanks to Donna for starting this very comforting thread. Do not post often but yes, this is the place where I find strength and knowledge and support. This line up of folks doing the battle and sharing their all and loving all of the fighters......WOW !! May not post but have to come her frequently for info and feel the LOVE and SUPPORT of these sisters and brothers.
Together......we are a powerful force !!
Hugs, Bonnie