HER2 Support Group Forums - View Single Post

Andrea Barnett Budin · 10-31-2005, 12:17 PM

Hi!

Initially diagnosed in '95 w/4th stage lobular breast cancer. What I felt was a general hardness of my entire breast. Having turned 50 and noting many physical oddities, I just kept checking monthly (and wondering). I never had a lump. Friends who had (benign) lumps and were checked every 6 months by BS told me to look for a hard nodule, like a "marble" or a "pea". Was on heavy dosages of progesterin (to help my peri-menstral heavy bleeding almost non-stop, though I begged for a hysterectomy, hating all surgery but feeling my body was totally out of control). I also suffered from incessant hot flashes which were maddening. They put me on hormone replacement therapy which helped. In retrospect, I still wonder if all that stirred up a hornet's nest.

Had a mastectomy and flam trap reconstructive surgery. (The tumor was so large, they could not save the skin, nor did they bother to shrink the tumor before surgery due to its size.) Had a port implanted, as my veins were impossible to find and collapsed when they were. Did 4 Adriamycin + 8 CMF -- treatments every 3 wks. ER borderline -- they put me on Tomoxifen, hoping I might derive "some" benefit from it.

In Aug. of '98 (after 3 every 3 month blood tests showed a "very slight" elevation in liver enzymes, and after being told by 3 different doctors that it could be coming from anything -- when I questioned the anomaly -- I was consistently told "I wouldn't worry about it. It's very slight.) Finally, I said I am worried about it. I had often questioned why we first liners weren't given continued CT scans (chest/abdomen/pelvis) as during treatment every 8 wks. Not even once a year thereafter. Well, I asked for a liver sonogram. I didn't even know to ask for an "abdominal" sono. I just knew I wanted my liver looked at! The radiologist kept looking and looking and then apologetically said he couldn't be sure what he was looking at and had to recommend I go for a CT scan. The scan showed multiple tumors on my liver. They did a liver biopsy and it was malignant. I was told (by a truly caring but floored doc and father of 3 daughters) that what I had was "Inoperable. Incurable. And you will be on long term chemotherapy for the rest of your life." I was stunned!

Got 5 oncological docs' input. Was told to flush my Tomoxifen down the toilet and never take it again. Was now told I was ER-. I was never given a # to go along w/that. But was told that the drug may have caused my new problem. Was found to be 80% HER-2+. 1 doc said Navolbene. 1 said Taxol. 1 said Taxotere because I had a highly aggressive cancer and that chemo drug was the most aggressive one they had in there arsenal at the time. I tried, but couldn't qualify for Herceptin clinical trials (due to the Adriamycin I'd originally been given). They told me to move fast. Taxotere was showing the best results combined w/Herceptin and it would hopefully become available to ALL. At the time there was a lottery system. Women given 3 months to live w/Her-2+ results were turned away and left to die. The FDA fast-tracked Herceptin and it became available to all of us around 9/30/98. IT WAS A GODSEND! I believe it saved my life.

It was one nasty drug. I had almost all the possible side effects but found myself believing again in my ability to rally and heal myself. I hit rock bottom and then began to soar. Every 8 wk CTs showed a little bit more and more of shrinkage of ea tumor (which were measured ea time precisely). My husband used to take the square root and show me an even rosier pic of my situation. I was slowly but surely getting there. I did Taxotere from Sept. '98. They added Herceptin in Nov. '98. After my May '99 CTs I was told by 2 different radiologists that they believed what they were looking at were the dead remains of tumors (cyst-like). I had no evidence of disease.

I continued Herceptin every wk no matter what (despite low white bld cell #s or anything). I stuck w/the program WEEKLY till Jan. '01 when I began the TRIPLE DOSAGE EVERY 3 WKS (w/clinical trials in France for 1 yr showing the new protocol lost no efficacy). I love this new deal! It's a real treat. Like a holiday. And it allows me to do a bit of traveling. I was getting my Herceptin (in Fla or NY) every single wk without fail. No messing around w/the proven protocol.

I go every 6 months for ECHO cardiograms to check the possible heart failure issue out. I go every 6 months for pelv sonos (in NY, where the radiologist performs the procedure and gets more accurate results, visualizing both ovaries -- digging hard, and decreeing them "beautiful"). In Fla a tech does the probing and a radiologist signs off on the report. Not for me.

By the way -- I know well the subtle signs of docs who know the STATS and look at you as a rare bird. I was treated as "the miracle patient". After a while, it got tedious. My favorite doc tells me he has come to "expect" good results from me. He's proud of me. He sets the bar high and is always encouraging. Friends w/BC who have docs that are at a loss as what to do next depress their patients to the point of being scared to death. Literally. That's not the doc you want. Docs who say you ask too many questions are not the doc you want. Docs who don't call you back the same day are not the doc you want. And though I love ea of my docs and truly believe ea 1 is brilliant -- they each have something different to add to the mix. And it is all invaluable. You want multiple opinions, from docs independent of one another, not doc friends who tend to back up what the other doc said.

Believe in your power to heal yourself. Trust your instincts. Listen to your Inner Voice. Make your intentions clear to your body. Use your thoughts to direct your immune system and all your body parts. You have that power. Fill your thoughts with certainty and positive expectation, and live each day joyful and serene, KNOWING you are going to be a survivor. Command your body to perform. And surround yourself w/positive people who admire your strength and courage. When push comes to shove -- you are so much stronger and braver than ever dared imagine. Reach for grace. And smile. THAT'S WHAT SURVIVORS DO!

With love and healing energy,
ANDI

10-31-2005, 12:17 PM	#31
Andrea Barnett Budin Senior Member Join Date: Oct 2005 Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW... Posts: 1,904	80% HER-2+ ER initially considered "borderline" Hi! Initially diagnosed in '95 w/4th stage lobular breast cancer. What I felt was a general hardness of my entire breast. Having turned 50 and noting many physical oddities, I just kept checking monthly (and wondering). I never had a lump. Friends who had (benign) lumps and were checked every 6 months by BS told me to look for a hard nodule, like a "marble" or a "pea". Was on heavy dosages of progesterin (to help my peri-menstral heavy bleeding almost non-stop, though I begged for a hysterectomy, hating all surgery but feeling my body was totally out of control). I also suffered from incessant hot flashes which were maddening. They put me on hormone replacement therapy which helped. In retrospect, I still wonder if all that stirred up a hornet's nest. Had a mastectomy and flam trap reconstructive surgery. (The tumor was so large, they could not save the skin, nor did they bother to shrink the tumor before surgery due to its size.) Had a port implanted, as my veins were impossible to find and collapsed when they were. Did 4 Adriamycin + 8 CMF -- treatments every 3 wks. ER borderline -- they put me on Tomoxifen, hoping I might derive "some" benefit from it. In Aug. of '98 (after 3 every 3 month blood tests showed a "very slight" elevation in liver enzymes, and after being told by 3 different doctors that it could be coming from anything -- when I questioned the anomaly -- I was consistently told "I wouldn't worry about it. It's very slight.) Finally, I said I am worried about it. I had often questioned why we first liners weren't given continued CT scans (chest/abdomen/pelvis) as during treatment every 8 wks. Not even once a year thereafter. Well, I asked for a liver sonogram. I didn't even know to ask for an "abdominal" sono. I just knew I wanted my liver looked at! The radiologist kept looking and looking and then apologetically said he couldn't be sure what he was looking at and had to recommend I go for a CT scan. The scan showed multiple tumors on my liver. They did a liver biopsy and it was malignant. I was told (by a truly caring but floored doc and father of 3 daughters) that what I had was "Inoperable. Incurable. And you will be on long term chemotherapy for the rest of your life." I was stunned! Got 5 oncological docs' input. Was told to flush my Tomoxifen down the toilet and never take it again. Was now told I was ER-. I was never given a # to go along w/that. But was told that the drug may have caused my new problem. Was found to be 80% HER-2+. 1 doc said Navolbene. 1 said Taxol. 1 said Taxotere because I had a highly aggressive cancer and that chemo drug was the most aggressive one they had in there arsenal at the time. I tried, but couldn't qualify for Herceptin clinical trials (due to the Adriamycin I'd originally been given). They told me to move fast. Taxotere was showing the best results combined w/Herceptin and it would hopefully become available to ALL. At the time there was a lottery system. Women given 3 months to live w/Her-2+ results were turned away and left to die. The FDA fast-tracked Herceptin and it became available to all of us around 9/30/98. IT WAS A GODSEND! I believe it saved my life. It was one nasty drug. I had almost all the possible side effects but found myself believing again in my ability to rally and heal myself. I hit rock bottom and then began to soar. Every 8 wk CTs showed a little bit more and more of shrinkage of ea tumor (which were measured ea time precisely). My husband used to take the square root and show me an even rosier pic of my situation. I was slowly but surely getting there. I did Taxotere from Sept. '98. They added Herceptin in Nov. '98. After my May '99 CTs I was told by 2 different radiologists that they believed what they were looking at were the dead remains of tumors (cyst-like). I had no evidence of disease. I continued Herceptin every wk no matter what (despite low white bld cell #s or anything). I stuck w/the program WEEKLY till Jan. '01 when I began the TRIPLE DOSAGE EVERY 3 WKS (w/clinical trials in France for 1 yr showing the new protocol lost no efficacy). I love this new deal! It's a real treat. Like a holiday. And it allows me to do a bit of traveling. I was getting my Herceptin (in Fla or NY) every single wk without fail. No messing around w/the proven protocol. I go every 6 months for ECHO cardiograms to check the possible heart failure issue out. I go every 6 months for pelv sonos (in NY, where the radiologist performs the procedure and gets more accurate results, visualizing both ovaries -- digging hard, and decreeing them "beautiful"). In Fla a tech does the probing and a radiologist signs off on the report. Not for me. By the way -- I know well the subtle signs of docs who know the STATS and look at you as a rare bird. I was treated as "the miracle patient". After a while, it got tedious. My favorite doc tells me he has come to "expect" good results from me. He's proud of me. He sets the bar high and is always encouraging. Friends w/BC who have docs that are at a loss as what to do next depress their patients to the point of being scared to death. Literally. That's not the doc you want. Docs who say you ask too many questions are not the doc you want. Docs who don't call you back the same day are not the doc you want. And though I love ea of my docs and truly believe ea 1 is brilliant -- they each have something different to add to the mix. And it is all invaluable. You want multiple opinions, from docs independent of one another, not doc friends who tend to back up what the other doc said. Believe in your power to heal yourself. Trust your instincts. Listen to your Inner Voice. Make your intentions clear to your body. Use your thoughts to direct your immune system and all your body parts. You have that power. Fill your thoughts with certainty and positive expectation, and live each day joyful and serene, KNOWING you are going to be a survivor. Command your body to perform. And surround yourself w/positive people who admire your strength and courage. When push comes to shove -- you are so much stronger and braver than ever dared imagine. Reach for grace. And smile. THAT'S WHAT SURVIVORS DO! With love and healing energy, ANDI