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07-16-2005, 08:17 PM

Dear Dede,

My story is very similar to yours. I was 33 years old and very successful, but crazy busy. I found a lump that seemed to get bigger and bigger very quickly, but my son was scheduled for a tonsillectomy and my two jobs were taking off...I was about to close my company's most successful financial year (over $2 million in income), when I found it, so I ignored it. Surely it was like the hundreds of cysts my mom had always had...it was too big to be cancer...Then, one day, my sister came to visit and help with my son's recovery from surgery. When she felt it, she "knew" it was cancer because it was so hard and textbook of all she had read, after having a scare or two herself. She insisted I see a doctor. I put it off. When I did, my OB-Gyn looked dazed. He had just examined me a few months before and felt nothing. He sent me for mammogram immediately. Because of its huge star burst appearance the radiologist was pretty sure it was breast cancer, but I was sent for biopsy anyway a week later. The biopsy came back positive, I was scheduled for surgery, modified radical, the next week with chest block instead of general anesthesia. 5 cm tumor ER neg; PR neg; Her-2 3+ (although we didn't know the her-2 part back then); 6 of 14 lymph nodes positive for cancer and a suspicious spot on the top of the right lobe of the liver. At first they kept me a Stage 3 b, after the liver biopsy was inconclusive for cancer and they put a port in my good arm and I started Chemo immediately. In those days it was CAF for months and months...then two months of taxotere at 100 per cent full strength, then two months of intensive radiation. The irony of it all, was that just before I finished my radiation treatments, my beloved OB-GYN dropped dead of cancer mets to the lungs, spine, and brain...the very man who had diagnosed me and saved my life was unable to save his own. Then my grandmother passed away at 91 the next month. Almost a year of extreme chemo and agressive radiation bought me about 5 months remission but by the spring of 1999, the cancer had metted to my entire liver, lesions as big as quarters, nickles, and dimes according to the radiologist who was freaked out when he saw them, after reading my clean scans only a few months before. This time, a second liver biopsy confirmed the worst...breast cancer mets to the liver and I was given two months to live and told to quickly put my affairs in order.... When I refused to die so easily, one oncologist had the "new idea" at that time to see if the tumors in my liver were Her-2 positive and then we also went back to the hospital that had done the original surgery and pulled the block that had my original tumor on it and we tested that for Her-2. All were positive, so my onc agreed that we could at least give the newly approved drug, Herceptin, a try. He wanted to put me back on Taxotere with Herceptin or some combo of chemo with herceptin as the studies seemed to be showing that Herceptin alone was not enough. I had in the mean time returned to grad school and begun studied biotechnology and proteomics at the time and argued with him to please let me just start with the herceptin alone. If it did not work, we would advance to the chemo combo. Since he was very young and very smart for an onc, he had already been charting my CA 27/29 tumor markers on a graph from Labcorp. After only ONE dose of Herceptin, the Ca 27-29 dropped straight down, in only 5 weeks of the regular dosing the markers stablized to normal. A CT scan showed the lesions decreasing across the board. I was stable for a year but the next spring, the lesions reappeared in the liver and I returned to herceptin for about 6 weeks...got another year remission, then the cancer returned the next spring...blah blah...eventually, my CA 27/29 was correlated to the serum her-2 marker and now after much trial and error, many terrifying scars, and mets here and there...we have found the appropriate dosing to control the markers in the blood, which via extension, control the mets. I always, STRONGLY, encourage everyone going through this to chart their CA 27/29 in relation to their Serum her-2 at least monthly and then, use the markers as biofeedback, using more or less Herceptin as necessary. This also saves a lot of toxicity to the heart as there is no reason to be taking it EVERY SINGLE week if your markers are low...in fact, in my experience, it is when the numbers go too low that the heart gets damaged, but that is just anecdotal, not proven. Get your own data, be responsible for your own health. You can do it. I am now eight years out from a Stage IV diagnosis and doing great. I still use limited amounts of herceptin every six weeks and more if I need it. I include a lot of oleic acid in my diet which works synergistically with the Herceptin and reduces tumor burden by more than 90 per cent and is not toxic. Good luck. If you have questions, my email is GPopp@Comcast.net. Take care.

07-16-2005, 08:17 PM	#6
Gina Popp Guest Posts: n/a	Dear Dede, My story is very similar to yours. I was 33 years old and very successful, but crazy busy. I found a lump that seemed to get bigger and bigger very quickly, but my son was scheduled for a tonsillectomy and my two jobs were taking off...I was about to close my company's most successful financial year (over $2 million in income), when I found it, so I ignored it. Surely it was like the hundreds of cysts my mom had always had...it was too big to be cancer...Then, one day, my sister came to visit and help with my son's recovery from surgery. When she felt it, she "knew" it was cancer because it was so hard and textbook of all she had read, after having a scare or two herself. She insisted I see a doctor. I put it off. When I did, my OB-Gyn looked dazed. He had just examined me a few months before and felt nothing. He sent me for mammogram immediately. Because of its huge star burst appearance the radiologist was pretty sure it was breast cancer, but I was sent for biopsy anyway a week later. The biopsy came back positive, I was scheduled for surgery, modified radical, the next week with chest block instead of general anesthesia. 5 cm tumor ER neg; PR neg; Her-2 3+ (although we didn't know the her-2 part back then); 6 of 14 lymph nodes positive for cancer and a suspicious spot on the top of the right lobe of the liver. At first they kept me a Stage 3 b, after the liver biopsy was inconclusive for cancer and they put a port in my good arm and I started Chemo immediately. In those days it was CAF for months and months...then two months of taxotere at 100 per cent full strength, then two months of intensive radiation. The irony of it all, was that just before I finished my radiation treatments, my beloved OB-GYN dropped dead of cancer mets to the lungs, spine, and brain...the very man who had diagnosed me and saved my life was unable to save his own. Then my grandmother passed away at 91 the next month. Almost a year of extreme chemo and agressive radiation bought me about 5 months remission but by the spring of 1999, the cancer had metted to my entire liver, lesions as big as quarters, nickles, and dimes according to the radiologist who was freaked out when he saw them, after reading my clean scans only a few months before. This time, a second liver biopsy confirmed the worst...breast cancer mets to the liver and I was given two months to live and told to quickly put my affairs in order.... When I refused to die so easily, one oncologist had the "new idea" at that time to see if the tumors in my liver were Her-2 positive and then we also went back to the hospital that had done the original surgery and pulled the block that had my original tumor on it and we tested that for Her-2. All were positive, so my onc agreed that we could at least give the newly approved drug, Herceptin, a try. He wanted to put me back on Taxotere with Herceptin or some combo of chemo with herceptin as the studies seemed to be showing that Herceptin alone was not enough. I had in the mean time returned to grad school and begun studied biotechnology and proteomics at the time and argued with him to please let me just start with the herceptin alone. If it did not work, we would advance to the chemo combo. Since he was very young and very smart for an onc, he had already been charting my CA 27/29 tumor markers on a graph from Labcorp. After only ONE dose of Herceptin, the Ca 27-29 dropped straight down, in only 5 weeks of the regular dosing the markers stablized to normal. A CT scan showed the lesions decreasing across the board. I was stable for a year but the next spring, the lesions reappeared in the liver and I returned to herceptin for about 6 weeks...got another year remission, then the cancer returned the next spring...blah blah...eventually, my CA 27/29 was correlated to the serum her-2 marker and now after much trial and error, many terrifying scars, and mets here and there...we have found the appropriate dosing to control the markers in the blood, which via extension, control the mets. I always, STRONGLY, encourage everyone going through this to chart their CA 27/29 in relation to their Serum her-2 at least monthly and then, use the markers as biofeedback, using more or less Herceptin as necessary. This also saves a lot of toxicity to the heart as there is no reason to be taking it EVERY SINGLE week if your markers are low...in fact, in my experience, it is when the numbers go too low that the heart gets damaged, but that is just anecdotal, not proven. Get your own data, be responsible for your own health. You can do it. I am now eight years out from a Stage IV diagnosis and doing great. I still use limited amounts of herceptin every six weeks and more if I need it. I include a lot of oleic acid in my diet which works synergistically with the Herceptin and reduces tumor burden by more than 90 per cent and is not toxic. Good luck. If you have questions, my email is GPopp@Comcast.net. Take care.