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

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.

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

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.

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 : )

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

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.

NED and 6+ years out from dx
 

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....

Dancing with NED from Marily I cannot get in with my password!!!
 

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.

Great explanation
 

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

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

Me Too
 

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

4.5 years and counting...
 

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.

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

Your travelling pictures look great! Thanks for sharing.

Just want to bump this up.

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!

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

Amelia
 

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

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!