"Living while waiting" - me too
 

I am taking a "page" from Andi BB's "book."

Refer to this thread if you have not read it:
http://her2support.org/vbulletin/showthread.php?t=38972

One of the later posts in that thread has Andi discussing watching her tumor markers spike and wondering if she has lost her bet that she could remain NED going off years of Herceptin therapy.

I am one of those who also has had a long enough run staying NED on Herceptin alone and have decided to plunge into the future without my trusty Vitamin H.

The reason I stopped Herceptin in the first place was because my MUGA had a drop of 9 points, so at my December 2008 consult, decided for a Herceptin Holiday. All was well in March, so am going for another 3 months' "holiday." My last MUGA had an increase by 5 points, but I would like a higher number. Normal range, but on the low side.

My brain MRI last week showed no disease there, so I go another 6 months on that one. (Like Flori - still NED in my head!) I have body and DEXA scans in June, and will assess again.

It is very hard to believe that I could actually be "cured," as this is not supposed to happen to the likes of us stage IV types. However, as Andi says, "adapt or perish," or words of that effect, according to Darwin. So, it is that I have yet another adaptation in trying to live with my main security blanket removed - yet at arm's reach should I want or need it. This feels sort of like jumping into the ocean without a life preserver ...


In the meantime, I am trying to put some order in all the files and things that just got "stashed" all during my life in cancerland. It is taking me a long time, because there is so much to go through and I can only concentrate on this for an hour or so at a time. It is like revisiting a life that was someone else's!

Sorry this is a bit long, but I wanted to explain myself a little.

Stephanie,

I am glad to hear your good news. Hope you have a good day. It is raining in Georgia. It is suppose to be stormy today.

How is your packing for your trip going?

Amelia

Steph, it is always scary when we lose our security blanket. You have come a long way and I applaud you for your courageous fight. I think if I were in your shoes I would be doing the same thing. As wonderful as herceptin is, I think your body needs some time to heal and detox on its own. Like you said, you know it is there waiting for you if you need it. So, get as organized as you like and live your life to the fullest girlfriend!

Steph,

A brave move but an important one I agree, I hope you continue to do well without your vit h and am so glad it's good news for you:)
Long may it continue, and re a cure, who know's???
Anything is possible!

Dear Steph,
I am sooo happy for you. You've lead the way in so many regards. Each time you post and I read your signature I am encouraged. There is it is...a Stage IV survivor!!

Each step of the way I've seen you try new and different things to remain healthy. (mega doses of Vitamin D) It has obviously worked. I am sure that using your instincts along with the expertise of your Dr., this is the right decision for you.

I hope you are setting aside all those old cancer related items that are no longer necessary and build a big bonfire.

Please keep us posted as you remain an inspiration to so many of us!!

Lori

Sounds like a great decision, and a brave one. I hear you on the files and the need to catch up and organize and am cheering you on, Hugs, Diane

Best wishes for continued remission, Steph. You know there are options out there should you need that again. May God Bless. Ceesun

Dear Steph,

You are such an inspiration for us. I am relatively new in this battle and feel so encouraged when I read your experiences, struggles and winning attitude.

I pray that you are cured and will have no problems without herceptin! God bless!

hugs,
shobha

Prayers...
 

that your waters will be still. Take care and God bless...

Hi Steph~
Still inspired, motivated and encouraged by you, your outlook & your example.
You were one of my 1st confidantes here, when I was dx'd 7 years ago. You & Lolly -i still miss her :( - & so many others have encouraged me during the scary, uncertain times & helped me find my fight & my focus when I thought I couldn't any more. Until I found this community, I had yet to meet anyone "like me" - Stage IV, surviving. Here I found you & others like US, not just surviving, but THRIVING in the face of this disease.
We are changing the face of the Stage IV Survivor. And any positive response to treatment, how ever long, is a victory for all of us.
May you & NED continue on your journey together, far & long, until Cancerland is nothing but a tiny, blurry blip on the map of your adventures through this crazy Life!

Hugs to you,

Jessica

ps-we will still expect to see you here, with or without Vit H!

Dx - 5/17/2002 @33yo ;Stage IV - IDC + liver met;Lumpectomy, 12/12+nodes; er/pr-, Her2+++
Tx1 - Navelbine+Herceptin x 8 wks; No response, progression - single liver met to "innumerable/immeasureable"
Tx2 - ISIS 2504 - clinical trial x 6mos.Taxol + ISIS (continuous IV);partial response.
Tx3 - Taxol+Herceptin x 13 weeks; NED :)
NED 9/11/03-9/17/04, then single liver met recurrence.
9/04-Recurrence 1- Taxol+Herceptin x 4 weeks prior to RFA, but NED again, cxl RFA.
12/04 -Recurrence 2 - single liver met
1/05 - RFA - partial response
2/05 - Tx4 -Abraxane+Herceptin x 9 weeks;No response due to improper dosing(?)
3/05 - Tx5-Taxol/Carbo/Herceptin to NED again.
11/05 - Recurrence 3 - same single liver met
12/05 - Right hepatectomy-55% liver removed. Success. NED in liver ever since.
2/06 - Recurrence 4 -single lesion in L breast again
3/06 -excisional biopsy. 1cm IDC, extensive high grade DCIS.
No tx due to liver still healing post hepatectomy, follow with Herceptin & scans to keep an eye on DCIS
12/06- L mastectomy w/ reconstruction 3/07 & 8/07
10/07 - Recurrence 5 - Supraclav nodes
10/07-2/08 -Tx6 -Gemzar+Herceptin, til NED 3/08.
9/08 -Recurrence 6 -Supraclav nodes again.Rads1 - x 7wks
10/08 - Acute Renal Failure - ICU x4 days, hospital 1 week, stents in ureters/kidneys x 4mos.still no known cause???
10/08 - Recurrence 7 -Sternal nodes; but supraclav -NED:)
10/08-3/09-Tx7- repeat Gemzar+Herceptin; NED in 1/09; finish GH cycle to 3/09.
105 chemo infusions to date!
4/09 - PET scans shows Recurrence 8 in sternal nodes...progression while on GH cycle.
5/09 - Now what? Tykerb/Xeloda/Herceptin...still deciding.

Dear Steph
I send my prayers to you for your remission and God willing cure.
You have been an inspiration to me during dark days since finding myself stage 4 with an unusual recurrence (according to my onc )and no research to outline how it may go.
Love Ellie

It is both a relieve and a scary thing to have to stop treatment. Welcome to the club.

Steph
 

your "life in cancerland" has been more far-reaching and of benefit to so many than I think you'll ever know. You have always shared so much and were quick with a response to so many. You are one of the bravest people on this site and very generous of spirit. Good luck.

Hi, Steph, I am thrilled that you are doing well without vit. H. and pray that continues indefinately!

Herceptin saga -- to be continued...
 

Yes, Steph, it's kind of scary out here. In uncharted waters. There are no studies on people like us. Long term Vit H users, 4th stagers who have redefined our class, defying the odds.

It's not so much like my security blanket has vanished, cause I must say I LOVE MY FREEDOM! And, I have been blessed to enjoy excellent results from my every 3 month blood tests and my every 6 month CT scans.

TUMOR MARKERS HAVE TAKEN A DIVE -- DOW TO 14 from 41. We are keeping a steady eye. Will recheck in 10 days.

I just feel *untethered*. Hanging out there in a parasail, blissed out on the beauty of Life but kind of without a net. On a tightrope, hoping I don't fall. Reaching for the trapeze bar over and over and praying I don't slip.

Congratulations on your good news. Enjoy your vacation. Get strong and have fun!

Maybe our bodies have *gotten over* our dysfunction. I won't call us cured. Just a word anyway. We've gained a lot of awareness and insight, vitamin and supplemented up, learned to de-stress in our personal styles (meditation/guided imagery works for me, along w/deep breathing). Maybe our bods have learned from what H has done for us, and can carry on, on their own!

Wayyyy back in the 70s I saw a PBS special on the MINDBODY CONNECTION. Relatively unheard then, they had me from the mere suggestion of the idea. I somehow KNEW what they were studying (in prestigious universities and hospitals)was right on.

A teenage girl had some terrible disease. She could only survive on this potent concoction. The docs knew she could not remain on this drug combo for long, but wouldn't be able to live without it. She was so young, and they wanted her to live a long life.

They slowly weaned her off the drug, using an extremely pungent rose smell w/each tx. Eventually, they gave her saline along with the strong rose scent! They created a kind of conditioned reflex. And lo and behold, she continued on doing well, w/only the smell of roses!

I never forgot that. The mind/body is a fascinating reality. We must learn to own it.

Stay well. Know that I am thinking of you. Oh, and thanks for the *plug*! I really think the original LIVING WHILE WAITING thread has some provocative ideas worth reading and pondering. You not only gave it a mention, you provided the link. You clever girl you!

BTW, Steph, your not plunging into the future -- you're SOARING!
http://cdn-cf.aol.com/se/clip_art/gstres/thghts/smile

I know that I was told when I recurred, in '98, that what I had was -- "INOPERABLE, INCURABLE, AND YOU WILL BE ON LONG TERM CHEMOTHERAPY FOR THE REST OF YOUR LIFE". Devastating words to hear. Guess all I saw was that I was terminal. I expected to suffer mightily.

Much to my delight I worked my way up to the "easy" chemo -- Vit H. Got a "cautious remission" out of one of my 5 oncs and ran w/it! Got to keep my hair, after losing it twice. Had relatively few side effects.

So I am not so much done w/treatment as tentatively taking a hiatus, w/visions of permanence. Knowing well of the impermances within Life itself. Not to mention the roller coaster ride we call canserland.

If we need it, we can always return. But I sure am enjoying being on my own. I feel like THIS IS MY NOW! Just wish I could read a book about what happens next. Guess we're the ones they'll be writing about one day. I don't recall volunteering to be a guinea pig. Yet, here am I! And you!

It is always great to hear the positive words - you can pass so much of your good to so many people!

Actually, thanks to you and to Andi also on behalf of the whole crew of people out there who will be positive and inspired!

Even though I am not in the same "boat" your words often change a negative feeling into a positive....please don't ever stop!

I believe you will be fine.

Big thanks for your positive words,thoughts and wisdom.I so needed to hear then today as first day post first dose taxotere,herceptin and central line insertion. Been feeling a bit wimpy but am now back on track after reading your uplifting posts-the energy you have is awesome.
Love Ellie, far away in England but close in spirit

Steph
Lucky you....what it must feel like without the treatment "ball and chain"......I can only imagine what a life without going for treatments would be like....you give us hope for many stage IV's that all is possible!
What a role model you and Andi are!!!!

Hi Steph, I understand that it is an important step. You do not often talk about yourself. You rather help others by giving information and hope. So if you wrote a long message it is because it is a difficult decision. Like letting go of an invisible hand that you believe protected you for so long. But this is a terrific step. It means that you are doing well and like Andy wrote "Maybe our bods have learned from what H has done for us, and can carry on, on their own!". And this makes me very happy for you. Hugs. Michka

Hi Steph, I have too decided to take the philosophy that I will not let this keep me from living or ruining what time I have left here. Hopefully it will be long. I have chosen to stay positive and have fun. I have not reached the point where I am near ready to get off Herceptin, it's been 3-1/2 years. My mugas are still great and it's not that big of a deal to me anymore to go get it. I am sure hoping that we will see a lot of us stage IV'ers being "cured" or as close as you can get to that. sherryg683

Dearest Steph and Andi,
I say "why not" ?
Why not beat the stats and the odds.
Both of you are my hero, your strength in fighting back and achieving NED with stage 4...Hey my sisters somebody has to do it...we all want to hear NED....

Love to both and I pray for continued good health!
Jean

On vacation....yes, that seems to be the feeling I share about leaving Big H behind. I'm not stage 4, just 2 or 3 or whatever they decided, but I know while there are no promises, I am so determined to "earn" those good days with finding some purpose for my days of vacation. It continues to amaze me how much easier it seemed to be a patient than it is to be "on vacation"!
I think in the days and years ahead, other warriors on this site will be reading some of these ol' threads and wonder why we doubted our chance at "cure".
Have a good trip, Steph! You so deserve the journey.
ma

Thanks to you all for your very thoughtful replies here.

I don't know about Andi, but I DO need the encouragement. It is en-courage-ment of a different kind than when I was in active treatment, but just as, if not more, necessary now.

Maintaining a healthy respect for this disease helps keep me a bit edgy about it all. When you have had it come back on you, you know what it feels like to be "stalked."

Speaking of "vacation," I do have one planned for the near future. Going to Italy on May 25th with my mother and youngest sister. We will be gone for 16 days and spend it all in the north-central area of Italy.

More about that in another post. But the trip is another reason I am staying off vitamin H, as it does give me bad leg cramps. Which are not conducive to a trip involving trains and a lot of walking.

For the record
 

it moves me so to read encouraging words. Absolutely. It spurs me on. Keeps me buoyed. We all need a little help!

and when someone mentions (even someone in england!) that what i post has lightened their burden i am over the moon happy.

sharing our stories is essential. This site is such a blessing. A place i can reach out and touch pinkie in canada, annlyn in australia, sisters across this country... Love you all!

Thanks everyone, once again, for your encouragement to carry on in the present fashion regarding my canser treatment.

I really appreciated some of the "nuggets" from Andi. This puts my feelings perfectly:

I am not so much done w/treatment as tentatively taking a hiatus, w/visions of permanence. Knowing well of the impermances within Life itself.

I DO feel somewhat tentative, but am trying to put that behind me as well. However this is even harder when the canser has jerked my chain more than once. Is it folly to believe that the canser has let go of ME?? Is it folly to believe that the mutation that caused all this in the first place has been somehow corrected?

Being very busy now, I do not give all this too much thought ATM. But I had the musing yesterday that the Herceptin half-life has passed and I am now without any bad cells being targeted. Me, my immune system and God.

Stephie,

I guess it's frightening to go off Herceptin even though being NED for awhile is a good thing.

I attended a MBCN conference in NYC two years ago and a women spoke who had been on H for eight years and had to go off because of her heart and she was equally concerned.

Have a great vacation.

Joan

Dear Steph & Andi ~ our shining-lighters http://her2support.org/vbulletin/ima...ons/icon10.gif you are both such an inspiration to me. Feeling down sometimes I need to plug into your positive energy.

Blessings always ~ one-day, one-moment at a time
Hermiracles

I somehow missed this thread, but glad to see it just now. Living with cancer is scary. I think there are other things that heal us just as much as an infusion. I would just enjoy the feeling of freedom - from having your life framed by your infusion schedule and all the associated side effect management issues.

"Breaking up (with herceptin) is hard to do" AND you can always get back together again if Ned leaves :-)

Flori

Thinking of having a herceptin holiday myself!
 

Hi
I have been on herceptin for 3.6 years and have been in remission for all of that (less 9 weeks). I am a bit of a believer in the stem cell model of breast cancer and research shows that herceptin kills stem cells, so after enough Vit H they should all be gone. It then would just be a matter of estimating when that point has been reached, in my case a 15 mm spot on the liver hit with taxol and herceptin; reduced to NED after 9 weeks, and then each herceptin treatment kills a few more stem cells and so on. (I also have 25 g of flaxseed a day which knocks out 70 % of the her 2 receptors and 2 g of DHA and 200 mg of Q10).

So I am working up to ask for a herceptin holiday after the magic 4 years is reached. I am 7 years from original dx. At present I have my treatments 4-6 weeks apart.

(I recently discovered that the mood swings and red rash I have been getting are also from the herceptin so a break would be a good thing.)

Jackie (down under)

Holding on to ned...
 

Jackie, I like the way you think. My onc, who has been my onc since '95, told me that those canser cells that were in my body back then, and in '98, were no longer in there.

He was concerned that I was building up a tolerance to Vit H (after 10 yrs of being on it). He was concerned when I was on it for 5 yrs, but I thought back then that, IF IT ISN'T BROKEN, WHY FIX IT? Well he hit me this time when I was ready, along w/my body, for a break. And, as Flori said BREAKING UP (WITH HERCEPTIN) IS HARD TO DO, BUT YOU CAN ALWAYS GET BACK TOGETHER IF NEED BE, OR IF NED LEAVES YOU.

I have a red rash on my upper arms. Dermatologist says he thinks it is vascular. It came mid H but it hasn't left and I have been off since 7/24/08.

However, I have more energy, have no more hot flashes and way less bathroom drama (though I remain cautious of my *trigger* foods, which took me yrs to figure out).

Please explain your red rash. Mine looks like I just got a bad sunburn. No itching. Kind of fuchsia colored.

Also the Omega 3's Flaxseed Oil, Co Enzyme Q10 and a heap of other supplements are doing exactly as you describe, I have no doubt. I also explicitly tell my body throughout the day what I expect from it. Clear focused Intention and Expectation (as Wayne Dyer suggests) are also key.

Andi

Andi and Stephanie, I missed your thread until today. I just want to express my appreciation to you two wonderful warriors! You inspire us all! Hugs, Tricia