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