Roll Call Long Time Herceptin Users

[Barbara H.]

Hi,
I have been on Herceptin since June, 2004. I currently receive it with the T-DM1 trial. It is an easy drug for me.
Barbara H.

[Andrea Barnett Budin]

Orig dx in '95. See my signature for details, please. Then, in '98 the bc recurred throughout my liver. My onc gravely told me that what I had was "INCURABLE, INOPERABLE... AND YOU WILL BE ON LONG TERM CHEMOTHERAPY... FOR THE REST OF YOUR LIFE". He had known me and Paul for 3 yrs. He was clearly morose having to give us this news.

But as it turned out, I asked to be tested for HER2, as Paul and I had been keeping up on the latest since '95. I was in fact 80% positive, as they stated it back in the day. Herceptin was still in clinical trials (my recurrence was in Aug of '98). The FDA fast-tracked the drug making it available to metastatic bc patients September 28, 1998. IN THE RIGHT PLACE AT THE RIGHT TIME.

And so Doc Slamon saved my life! And after 9 mnths of Taxotere hell, long term chemotherapy became monoclonal antibody therapy, which is not as horrid as one would imagine, though potent, toxic and potentially a lot of bad things. For me, it was a life saver.

Now, my onc has taken me off Vitamin H, believing those old cancer cells are no longer in my body and that I might be building up a tolerance to H (after 10 yrs). So we are giving my bod a break.

I HAVE BEEN OFF HERCEPTIN SINCE JULY '08! I REMAIN STABLE.

Ev 3 mnth full panel of bld tests, including of course TMs. Ev 6 mnths CT scans.

I PRAY ALL THE TIME THAT MY SISTERS AND BROS WILL REACH THE POINT OF REACHING NO NEED FOR OTHER CHEMO AT THE VERY LEAST.

I BELIEVE FERVENTLY THAT FOCUSING ON THE HIDEOUS STATISTICS IS BAD FOR YOUR HEALTH. IT REACHES A POINT, I THINK, WHERE WE CAN BE SELF-PROPHESIZING, BELIEVING IN THE PRECARIOUSNESS OF OUR SITUATION.

IF EVERYONE STOPPED BUYING INTO THE STATISTICS, I THINK THE STATS WOULD CHANGE.

CAUSE I BELIEVE IN THE ENERGY OF THOUGHTS. OUR BODIES HEAR EVERYTHING WE THINK, SAY OR WHISPER. WE CAN PROGRAM OUR MINDS TO GIVE SPECIFIC, HEALING ORDERS TO OUR BODY.

THE UNIVERSE SENSES THE ENERGY WE ARE EMITTING AND RESPONDS -- IN KIND. SO WE CAN GET THE UNIVERSE TO ASSIST US IN ATTAINING OUR DESIRED DESTINY.

THAT'S WHAT I BELIEVE WITH ALL MY HEART.

I MEDITATE. I USE GUIDED IMAGERY, SEEING MYSELF FAR, FAR INTO THE FUTURE. SEPT 3, MY 65TH BDAY, I REACHED ONE OF THOSE GOALS. GETTING FROM AGE 50 (AT ORIG DX) TO MEDICARE! IT IS SURREAL. HERE I AM!

NEXT JANUARY, 2010 , I TRUST I WILL REACH ANOTHER LONG TERM GOAL. ATTENDING THE BAT MITZVAH OF MY OLDEST GRANDCHILD. I ADDED THAT DREAM WHEN SHE WAS 1 YR OLD. YES, HAVING OCCASIONAL THOUGHTS THAT I MIGHT NOT MAKE IT TILL HER 1ST BDAY, YET IMMEDIATELY REPLACING SUCH IDEAS AND VISIONS WITH STRONG, TENACIOUS, POSITIVE ONES.

I HAVE TAKEN MY LONGGGGG LIST OF SUPPLEMENTS (FROM MY ONCOLOGIST/NUTRITIONIST -- I HAVE 5 ONCS ON *MY TEAM*, BENEFITING FROM MULTIPLE PERSPECTIVES) SINCE OCT. OF '98, 1 MNTH INTO TAXOTERE. MY NUT ONC, WHOM I ADORE, BELIEVES THAT WHEN YOU ARE ON CHEMO, THAT'S WHEN YOU MOST NEED THE HELP OF SUPPLEMENTS, TO BOOST YOUR IMMUNE SYSTEM, TO FIGHT OFF FREE RADICALS AND CANSER PROLIFERATION, TO MAKE YOUR HEART STRONGER, ENERGIZE YOU, ETC., ETC.

I STILL TAKE MY DOZENS OF SUPPLEMENTS DAILY, EVERY DAY, NO MATTER WHAT, AS IF THEY ARE PRESCRIPTION DRUGS. I DRINK 10 GLASSES OF WATER DAY.

I PRAY FOR YOU ALL DAILY AS WELL. CAUSE I TRULY LOVE YOU ALL. I ADMIRE EVERY ONE OF YOU. I SEND YOU ENERGY FULL OF STRENGTH, COURAGE AND DETERMINATION... YOU ARE EACH UNIQUE AND YET ALL TOTALLY AWESOME. YOU, AND YOUR CAREGIVERS. I APPLAUD YOU. YOU ARE AMAZING!
ANDI

[nitewind]

Andrea, your story amazes me and the fact that you are 65 amazes me even more. You are one beautiful lady.
God Bless

[Sherryg683]

I'm a lifer here...been on Herceptin since Dec, 05. My mugas are all great, so no problem with heart. I just seem to have sinus issues. Sometimes, I have no problems at all, then others I will feel bad for a day or two. Nothing terrible though...sherry

[Andrea Barnett Budin]

Hi! Herceptin gave me a really dry nose. I used vaseline ea night.

And -- AYR -- simply saline -- sprayed in nostrils seemed to give my sinuses relief.

The dry cough, esp at night, was relieved w/Priolosec, over the counter, bought by the bushel from Costco.

Try these and see... I'm just saying...

[fullofbeans]

On Herceptine since late 2006 (NED since Jan 2007) so not far off 3 years of the drug..

Runny nose and temperature on day of IV all else okay.