All Those Not Quite Ned...let's Talk!

Ceesun · 06-29-2008, 09:11 AM

Sisters and Brothers: How about those who are not quite NED... maybe were before or never quite made it to that point, but are still thriving, striving and yes, surviving-- let's push on with hope! My situation is this: one stubborn lung nodule has returned while on herceptin only so I am back on xeloda and will add tykerb in a few weeks. Hoping this will kick it to the curb. Ceesun...how about you, friends!?

Diana1993 · 06-29-2008, 09:58 AM

Ceesan, Like you I have survived and thrived but never NED since 1993. Up until this hand foot syndrome, giving up was never an option for me. I am having too much fun here. But having sore feet and hands are becoming a challenge for me to get 'it' right. I never seem to have time to respond to threads and I always want to offer my support or condolences, but so many say it far better, so I don't. I would also like to participate in many awareness campaigns, but I don't. I love my friends and family and always want to show my appriciation and for that I do. I sincerely appreciate this site and hope in some small way I can contribute.
Hugs,
Diana

Believe51 · 06-30-2008, 10:30 AM

I did not want to post to the other thread since Ed is not officially dancing yet and he may not even get there. He is extremely close to NED and I think this in itself is inspirational since this IBC has shown to be stubborn getting a grip on. In the beginning he was diagnosed stage IV with organs shutting down, we stopped that and with very very little organ damage remaining; it helped that his organs were in remarkable shape since he did not smoke, take medications, ate right and worked out daily. They gave him 6 months, 9 at the maximum.....well he beat that and received the time we were petitioning for and shall continue to petition for.

When beginning our journey here at Her2support the first thing we did was look for survivors and people whom made it to remission. To us it did not matter if they reached that point in their journey yet, it was important to see that they were still fighting the odds. It is my pleasure to be the one writing that Ed is still fighting those very bad odds, it is also my pleasure to be able to sit here and inspire others in their quest to find some more hope.

The average amount of time that I kept reading when I looked up Inflammatory Breast Cancer was 21 months. Well Friends, June marks 21 months for the Mighty Oak!! Still thriivng!! Not dancing but practicing for NED if that day shall come. In the mean time we will take every moment of every day. We will fight the best way we know how. My poor 'lil Sweetie did a chemo regime of Taxotere/Herceptin and failed. Second regime was Tykerb/Xeloda and failed. His recent treatment was 10...yes...10 Adriamycin/Cytoxan. He also had Whole Brain Radiation along with Pelvis radiation.

He had mets to the bone and brain. The bones had both lytic and blastic lesions....Zometa has drastically improved these lesions.

Before I turn this post into an autobiography (smiling) I want to just say that our journeys are all unique. Having a great medical team, wonderful caregivers (a-hum!) and being a knowlegeable patient has great advantages. We have remained as positive as possible BUT I am a realist and know just what this disease can do. Either way, this disease can get bigger than the person affected. This does not make you less my hero, nor less a Warrior, nor less an Angel!! We all have the same goals, to fight, to succeed, to buy time so we may finish the stories called our lives.

Taking day by day, doing baby steps...look at where we are. This site has been the largest part of helping us to to cut up this journey into bite size pieces. Our life is better than it ever was and for the first time in my life I have felt complete. It is almost like our life makes sense, a giant puzzle that is being put together and that everything was meant to happen this way. Does that make sense??

Now Ceesun, how is that for talking?? Hahahaha! Hope this inspires the HOPE I intended it to. May we delve forward into our journeys with passion. May we all live long enough to see a cure or something close to it!

Love You All>>
Believe51

Joan M · 06-30-2008, 11:48 AM

Ceesun,

I'm still dealing with a subborn lung nodule, too, that's a local recurrence from the surgery I had last year. I'll be deciding what to do about it soon.

Joan

Pam P · 06-30-2008, 06:33 PM

Thank you for starting this post. I have never acheived NED either. I keep hoping, but so far 'stable' has been my best report. I have mets to the bones. I was 1st dx 7 years ago this month stage III. A little over a yr later one bone lesion first appeared. It was probably there from the beginning my onc. says, but just didn't show on scans. Since then I've been on some kind of treatment constantly - mostly chemo. Now the scans show involvement in several ribs & vertebrae. So no chemo yet has completely wiped it out, but I still hope it will happen. Meanwhile I'll take stable. I've learned to live with my 'new normal' of dealing with chemo s/e. I think I've been pretty lucky in that mostly the chemo s/e have been tolerable for me. I'm enjoying my friends, family, 1 yr old grandbaby!, work (most days) although I wish I could afford to retire, but I'm 56 & need the income & health insurance. I'm praying we have many, many, many more years even without NED.

Jean · 06-30-2008, 07:41 PM

Ceesun,
I am curious if you will stay on Herceptin? New studies are showing the combination herceptin/and/Tykerb are
very good. Wishing you the best in your new treatment.

Regards,
Jean

SoCalGal · 07-01-2008, 12:37 AM

Thanks Marie for your heartfelt words. I love what you wrote.

I will quote my daughter and say that I truly wish I could "...step back to when cancer was an obstacle, not a lifestyle... "

Since I can only go forward I will also say that I'm glad Ceesun started a thread for the many fighting active mets-the dreaded but survivable-stage 4. I am not "ned" but I am still here.

Flori

mrsd · 07-01-2008, 11:14 AM

Great thread! I joined the stage 4 club unwillingly almost two years ago, and so far have not reached NED, and may never reach NED. I am very happy with stable and feeling good, this allows me to work for a living, play to have fun and enjoy my friends and family.

Believe51 · 07-02-2008, 01:13 PM

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

jones7676 · 07-03-2008, 10:52 PM

I've been dancing with NED for the last 2 1/2 years....but remain hopeful! I still believe there is a chance....

Sheila · 07-06-2008, 05:55 AM

Ceesun
Thank you for starting this thread....my dance with NED was short lived...for a little over a year in the beginning...way back when I was a 1...now as a 4, seems I am always sitting on the sidelines waiting for NED to come back, ask me to dance once again....my dancing shoes have been hanging up for about 5 years now, but I dust them off and keep them ready...just in case....until then, I can still hear the music, and life is still wonderful even as I wait as a stage 4

Jackie07 · 07-06-2008, 08:00 AM

Guess I'll join the club since nobody has declared me NED yet. Not even realized that my 5 years anniversary had just passed.

Hubbie and I went to a Chinese buffet for our 20th anniversary - can't believe how fast the time has passed. My Mother-in-law warned me before my wedding. She's married 58 years now. My Father-in-law still drives 30 miles (round trip) every day to the nursing home to feed her.

I am taking a college algebra course. Will try to get a degree teaching math in a couple of years. No, nobody knows what the future holds. But I am doing my part and let God (and/or the doctors) do His.

Believe51 · 07-08-2008, 12:19 PM

Just wanted to bump this again as I know there are more of us out there. This is a great thread and I think it is our task to inspire some more hope to others in search of.

In the mean time, NED or NOT.....let us live like we are already there. Blessings>>Believe51

dee1969 · 07-08-2008, 02:36 PM

Hi! I have not reached that beautiful spot of NED but right now I am happy to celebrate being classed as stable. This is a very important thread, esp for all those newly diagnosed as Stage IV . I was having a 'whats the point..?' kind of day til I came here and read this thread at this site.
I am stage iv for 16 mths now and to read stories about people who are still here after many years of stage iv lifts my heart and soul so much. Some days I get very apathetic but most days I believe that I am very lucky to be here at this time, to avail of new drugs that stall this disease. I will be happy if I can remain stable; to be NED is a state i know may never happen ( but also, may!). However I have never been happier, ironically. To be stage iv is a strange gift - I value life, friends and being able to move without pain more than i ever imagined possible. Sometimes I am walking down a street and I know in my heart, and by looking around that I am most likely the happiest person there. Nothing worries or frightens me like it used to. I believe I could have never reached this happiness without being stage iv. And I also believe I would never have truly believed so strongly in God, because He truly has been there to help me stop the tears flowing, and let me be able to say 'Thy will be done' and mean it. I can control only so much; I have been very happy once I realised this and left what will be the rest up to Him. Some people leave their home to go work and never return home, after say, being hit by a car etc. They never got to say Goodbye. Little children accidentally fall off bicycles and die, too young, never having a true chance at life. I have had that chance, and know I will have a chance to say Goodbye to my loved ones, and they me, when my time comes. Afterall we all must go. Stage iv cancer dangles death before us, but death is before us every day , it's just without cancer we are mostly all happily oblivious to it. I have stopped seeing what cancer has taken from me- my chance to carry a child, my mother when I was 9, and many others. Instead, now I see it is a different plan that has been handed to me; what i had assumed in my 30's- perhaps complacently- will not happen. I am now reading and planning from a different map. My husband and I have cried a lot, but we look up from our new map every now and then and smile at each other because we know we value our life together now more than ever and also know that ours is never a dull or complacent life and that we are stronger and always ready to take an unknown path. Fear, in the end has given way to exhilaration.
To all reading from this site, be strong. Read and research. Never give up, not until the last breath leaves you body. xx d

Sherryg683 · 07-08-2008, 08:21 PM

I was diagnosed stage IV 2-1/2 years ago and after 4 months, I was NED and have been ever since. I continue to do Herceptin though. I am completely aware that I am just "one scan" away from my dance ending. Not trying to be pessimistic, it's just the facts. It does me good to read that even though my "dance" may eventually end my "fight" won't. It is reassuring to know that you can survive and co-exist with cancer. It is not what I would have wanted for myself or anyone, I sometimes feel I am doing my "pennace" here on earth. Keep fighting sisters, we have no other choice..sherryg683

chrisy · 07-09-2008, 12:30 PM

Ok, well I guess that would be me, too!

Dee1969 - great post. I've also had many "what's the point" moments/days. But then again, what would be the point of feeling that way all the time? What if I defy all the stats and live another 36 years, only to look back and think "why did I waste it missing the point?"

I try so hard to just keep doing my life; if nothing else, dealing with Stage IV cancer has made me an excellent schedule coordinator as I try to fit weekly trips to UCSF into my schedule. I often find myself feeling - saying out loud - how lucky I am to be able to walk in the sunshine (or fog, being that it is San Francisco) the few blocks between the parking lot and the hospital.

I still hope to get back to NED someday, and my secret wish is to live long enough that I could actually be cured! In the meantime, I dance with whoever will have me until that dumb NED shows up!

Ceesun · 07-10-2008, 09:41 AM

As I read these wonderful comments while on vacation from the "cancer world' if only for a few weeks, your words lift me up. Love, Ceesun...keep it coming, if you wish....

Believe51 · 07-18-2008, 12:48 PM

Wanted to pull this up because I think this is an important thread. Although Ed is stable I have not heard the word "NED" yet. Personally, I cannot even say the word yet until our doctor mentions it. Not a superstitious person but do not want to jinx anything yet. Until then we are happy to be stable and off of treatment and will certainly revel in the freedom. If we never reach the point of 'dancing with NED' we will be able to say that our life could have not been lived any more happier and that we would have not do one thing different.

I am just happy that my husband is still here beating all the odds. Besides remission, what is better than that??>>Believe51