[Andrea Barnett Budin]

Lani, you're the best! In 1995 I was diagnosed w/4th stage invasive lobular carcinoma w/ a 9cm tumor and 2 nodes out of 18. Borderline ER. Had mastectomy, tram flap reconstructive surgery. I was 50 yrs. old. Had been going through menopause for 10 yrs. Had my last period 12/90. Arm pain like a too tight tournequet cutting off circulation all the time. Excercises I forced myself to do helped. 4 Adriamycin and 8 CMF. Felt weak and weaker, fluish, clammy, hot flashes (worse than usual) and chills (totally new), dizzy, spacey, shaky. Thought I was done.

'98 multiple liver mets (w/a very very slightly elevated liver enzyme count found every 3 mnths for 6 mnths that all docs told me not to worry about). I finally said I was worried. Could I have a liver sonogram? Radiologist apologized, but had to send me for CT scan. Wasn't sure what he was looking at. After CT, liver biopsy. Now I asked to be tested for HER-2 gene, which my husband and I had been keeping up on, staying as well informed as possible, beyond every 6 month breast surgeon's checkups and onc visits. 80% +. (An isolated gene they have found is responsible for 20% of breast cancer. Don't know what causes most BC.) It was Aug. Herceptin only in clinical trials. I tried to apply. Failed. Too much Adriamycin. Highly aggressive cancer spreading visibly in tests over 4 wks. 3 different suggestions for protocol. I went w/the one they then called the most aggressive tool in their arsenal, Taxotere. They called it the "freight train drug". (Found out later it is probably so called because you feel like you've been hit by a freight train.) 8 months of that drug. Added Herceptin in Nov. '98 every wk (after fighting off a shingles attack, from lowered immune system). Every 8 wk chest/abd/pelv CT scans showed slow but steady shrinkage of each and every tumor, getting exact measurements each time. Could not continue Taxotere. 24/7 tearing profusely. Dry dry dry everything. Moisturizer, vaseline everywhere. My skin never looked better. My cheeks would sometimes bleed as I washed my face. My nose would bleed for the first half hour of each day. I'd use 1/2 a box of tissues in 30 min. Deep muscle pain in arms and legs. Fingernails turned black and separated from nailbed. Breathless. Had pleural effusion (fluid around lungs) and pericardial effusion (fluid around heart). Shuffled when I walked and stumbling, catching my toe. I held on to someone or something all the time. Foggy-brained and out of it. Could barely gather the strength to talk at times. Slept alot. Or stared at the ceiling. Major nausea (lost 33 pounds, which I found when I returned to being able to eat a normal meal). Do not exercise and know this is contributory. Diarrhea all day, every day. 20 Imodium in a day to try to get control. Living in fear of having an explosion when I was out of the house. Kept an spiritual, inspirational book by the toilet, where I lived mostly. In boredom and desperation I vowed to focus and read 3 pages a day, a tall order for a brain that could hardly think. Found my "essence", at my core. Became spiritually EMPOWERED. Determined to heal my body with every thought I had, every image I could muster. Spent the day on guard against any and all negative, toxic ideas that tried to rule and ruin my life. Rewrote my internal dialogue! Punctuated with visions. Came out with joy, harmony, gratitude for my many blessings and awe at the beauty of the world. Opened myself to become a vessel of LOVE. Sounds dramatic, but actually worked. Infinite, pure, unconditional Universal LOVE filled me up with its sacred energy. (I had less than a 15% chance of surviving.) I determined to be among those who survived! Someone has to be in that little group! Why not me?

Been on Herceptin wkly from 11/98 - 1/01, then switched to triple the dosage every 3 wks. Off Taxotere since Memorial Day (end of May) '99, relying only on Herceptin. I have personally seen Drs. Dennis Slamon and Mark Pegram and hugged them and thanked them for saving my life. It was the most joyful of experiences. Those words -- THANK YOU FOR SAVING MY LIFE are packed full of such overwhelming love and appreciation, are so rarely used, they rock your world. The docs too were overjoyed. What greater gift than to meet someone who is alive because of your efforts?!

Now, some yrs ago when I called the above Docs, the UCLA Medical Research Department, Genentech and every national cancer association in the country -- to gather info re staying on Herceptin longterm -- every one returned my call within hours. The same day. Genentech asked for my name. Couldn't find me in their computer. Said, Are you sure you're on Herceptin? Yes. That's impossible. We have everyone's name who is on the drug. I assured the young man of the accuracy of my statement. Then he asked -- Where are you getting this from? From my Doctor! (Did he think I was buying it illegally off the strett?!) AND NO -- GENENTECH HAS NEVER CONTACTED ME SINCE RE ANYTHING. I know "the look" when I mention my side effects. Not in the literature, never heard of that... I check w/others in the chemo room and found a woman in Calif who has been on Herceptin since '95, in the initial clinical trials at UCLA. She has BC into the liver as well and looks beautiful. I am told I look beautiful. You'd never know. Makeup, fussing w/what has grown back on my head, earrings and some gauchos or capris and a nice top work.

I had extrememly thick black hair, slightly wavy and a bit on the oily side. Everyone who has ever washed my hair or worked with it at a beauty parlor has always commented -- Wow. You have some head of hair. Well, after the initial grow back (remember I went bald TWICE) I had fried very curly hair, like brillo or straw. The second time, my eyebrows did not return and only half my thick lashes. (People used to ask, Are they real?) My hair is back but way way thinner, especially around my face. My hairline (widow's peak and all) has some fuzz leading to a receding, scalpy reality. I style my hair to curl down over my baldspots.

Now about to mark the end of my 8th year on Herceptin, I will tell you this. Dr. Pegram, a part of the team that developed Herceptin w/Slamon for Genentech told me that as long as I can physically continue to withstand the treatments, as well as emotionally and financially, he can't give me a reason to stop taking it. They simply don't know A LOT. "I" think I'm still here because this is my insulin (the drug that's keeping me going and taming the nasty HER-2 gene). I say I'm going for chemo next Thurs. but I'm thinking I'm going for my monoclonal antibody treatment. I have been moved up to every 3 mnth chest/abd/pelv CT scans and then every 4 mnth and now -- every 6 mnths. I was going for an ECHO every 6 mnths (my EF is at 50, down from 65). If the EF drops below 45 I'm advised to stop for a while. You can always go back on. I'm afraid to miss a single treatment, as I am about not taking my blood pressure meds. They're essential to my health and well-being. I think taking 1/2 a baby aspirin every night (and a whole one on Sundays) is a good anti-clotting measure. I have seen a great oncologist in Manhattan who specializes in nutritional supplements that boost your immune system, that are anti-cancer and free radicals, that boost your heart, teeth and gums. I will give my list to anyone who wants it. WE'RE ALL HERE TO SHARE.

HERCEPTIN SIDE EFFECTS:
...Extremely fatigues (yet glad to be here) and have good, even perky days, inexplicably. I fight it most days. I cave in when I must and treat myself to a day off, as I can.
...Am foggy-headed all the time (do take Ambien and Ativan for insomnia, which friends my age who never were sick have) I believe a good night's sleep is essential to good health. I have read reliable studies that conclude this. And I know how useless I am the day after not getting to sleep until 3:, 4:, or even 5AM.
... Recall of words is a challenge. I am working on writing a book for the last 4 or 5 yrs so I am forced to cope w/this and maybe am even strengthen my brain muscles through overuse. I read and write incessantly (in the middle of the night, in the middle of a movie theater). My thirty something daughters also have this problem. We're all on overload, you know.
...Extrememly dry eyes (which began w/the Taxotere and the constantly tearing eyes). Back then I had to use Refresh+ every single hr. In 2-4 wks my situation improved so I could use this preservative free product first thing in the morning and last thing at night, plus sometimes in the middle of the night. Not blinking when sleeping, which is natural of course, seems to aggravate the condition.
...Very dry nose. Use Vaseline or Ayr gel at night several times. Helps.
...Very dry skin everywhere. Use Curel all over my body twice a day and moisurizers on my face day and night, in my hair with shampoo and after (leave-in) -- gobs of it. My skin is soft, like a baby, and I get compliments on my skin all the time. (I can now exfoliate, removing the dead cells,use toner to take away loosened cells, and massage my face each and every night. And as I say moisturize.) I drink 8-10 glasses of bottled water a day, every day. I use Vitamin E and Omega 3 and Fish Oils -- ingested.
...Had major diarrhea problems all day every day until last Oct. when my NY onc/nurtritionist told me to take Wobenzym N (2 in the A.M., 2 in the P.M.) It has altered my life immeasurably. I am like a normal person.
...Have redness on my upper chest, under the breastbone and on my upper arms. Use moisturizer twice a day. It doesn't itch or change.
...Extremem sensitivity to the sun. Use block.
...Vision problems, blurry, worsening. Wear glasses, not a candidate for contacts. Was yrly increasing perscription, then went 3 yrs without, just had to tweak it a bit.
...No headaches. Do take 2 Benedryl at night, to help sleep and to I'm not sure, prevent allergic reactions. No steroids since off Taxotere (which was the day before and the day of).
...Had high blood pressure before BC. It is under control. Coreg. Vasotec.
...High cholesterol, though I do not eat anything fried or oily, only low fat everything (cheese, dressing, etc.). I DO NOT EAT ANY SUGAR -- since 12/04. I think these foods are "trigger foods" for my IBS like syndrome (Irirital Bowel). I had read a lot on this subject so pertinent to me. I was taking Zocor to get the cholesterol #s good as my body seems to produce it on its own and now have been switched to something new because my trigliceride # was way off.
...I am cheerful (on Zoloft half dosage for a while, now on Effexor), optimisitic, joyful, grateful for my family and friends and the gift of each day
...Hot flashes out of control. The NY onc/nutri guy says I can take Primrose Oil and Black Cohosh, which I do and it helps somewhat. My upper body and head become drenched and I feel like I'm on fire, inside a wet suit that's 3 sizes too small and want to escape my own skin. The Effexor, begun only a few wks ago, is meant to help depression and hot flashes. I believe it is kicking in.
...Swollen ankles and feet. But so did my Aunt Molly and Mom.Am on diuretic for blood pressure and this water retention.
...Bruises that don't go away. Not that they take a long time to heal. They are not sore anymore, but remain as black and blue spots.

After initial diagnosis in '95 was put on Tomoxifen (as a borderline ER person). When the BC metastasized my docs told me to flush the pills down the toilet. I am now officially ER-. This is unusual I am told with a HER-2+ person and especially one w/lobular carcinoma.
By the way, I never had a lump! MY 9 cm tumor could not be seen in mammography. It was a general hardness of my entire breast which alarmed me to the point of moving up my next annual mammog several months. Then all hell broke loose.

LANI -- your unscientific study is a dream come true. I am eager to hear more from all you heroes out there. YOU'RE DOING A GREAT JOB! Do not give up. Every thought has the power of a prayer. Every prayer is a potential miracle. I am a miracle patient, one nurse told me, amazed to see me again. But I keep popping up. I'm still here. Not perfect, but doing my best. I give ladies a big THUMBS UP for doing a great job.

With love,
ANDI