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08-14-2005, 01:01 AM

Hi J Mc and everybody,

To answer J Mc's question. In a nutshell, I use the data I get from regularly taking my Serum Her-2 and CA 27/29 markers as biofeedback to control when and how much herceptin I take. And get scanned regularly as a back-up, lest, I would pick up a different, non-her-2 related cancer. It is very simple really and very non-toxic, but there is no guarantee it will work for others. Early on, it was discovered that I had the most unusually GRAPHIC response to HERCEPTIN with my CA 27.29. Way back then, I had a REALLY good/young topnotch, highly logical, incredibly intellegent onc who was smart enough, even back in 1998 to be charting my CA 27/29 on a regular basis. As he was more or less doing this anyway, he was shocked to see what happened after I took my first dose of HERCEPTIN (after being given about 2 months to live with horribly agressive liver mets...prior to getting the herceptin, he sent my breast tumor (primary) back to be checked for HER-2 and had my liver biopsied to check for it there too. The liver biopsy and the tumor block from my breast confirmed the same thing: ER-/PR- Her-2 3+, and so he convinced my insurance to pay for the herceptin as it had only been approved by the FDA for about 5 months when I started it but he could PROVE I was her-2 positive.)

Anyway, the very first week I took a loading dose of 4mg/per kg of body weight, my CA 27/29 dropped STRAIGHT down..(I still have all the graphs) and the next week, straight down even more...in only 5 doses of Herceptin (five weeks : Loading dose 4 then 2 each week thereafter). At that time, we did not know much about Herceptin 's long range effects, so once the numbers normalized I made the decision to stop taking it...(being concerned about my heart as when I started chemo in 98 my MUGA was a weak 45 and I had had months of very agressive CAF and the adriamycin is very hard on the heart and I was concerned that I might "control" the cancer by staying on the herceptin, but have a heart attack or congestive heart failure doing so and die anyway as there is a LOT of coronary disease in my family...sighh...Anyway, only 5 doses of herceptin bought me nearly a YEAR of NED...incredible isn't it...but the whole time I was off, the only way my onc would agree to me NOT taking Herceptin (as he had recommended the golden standard of 2mg/per kg of body weight to be continued till I died), was if I submitted myself at first to weekly CA 27/29 and other Bloodtests, which later moved out to monthly...etc. I probably have more her-2 specific bloodtests graphs and real empirical data results in these last 8 years than almost anybody. I have saved it all in a series of 8 page-protected 4" binders...sigh...to be so anal....

My onc was a true hemotologist first/then an oncologist. He was fascinated with the various signatures different cancers left in the bloodwork...almost like footprints in the sand. I learned a lot from him. Anyway, we had a plan...he "KNEW" the cancer would return and so we agreed that when the CA 27/29 got to a certain point, we would go back on herceptin...same loading dose 4mg...then back to 2mg...We did this, it worked great...I took 6 cycles , got the numbers down to low (we liked to keep them around 8) got another year ned (but remember I was using diet and was very motivated to live a clean life as I was a single parent of a very small son), then it came back again (liver) (same time frame every year...that is where I first got my inkling that it could be somewhat microbial related because it seemed to be displaying a circadian rhythm of sorts...blah, blah Anyway, long story short...that oncologist left the area for greener pastures in the south and so with other oncologists, I pursued many different dosing strategies...I tried taking 12 very strong doses one year (loading 8, then 6, then 4 then 2, 2, 2, & 2), but that only bought me ned about the same time, another year...started going up same time same place...(in me, her-2 cancer seems to worsen from Spring into the Summer and lessen Fall into winter...again, this is just something parculiar to me I suppose...) We tried various other strategies...but because of the family heart history and my own history with CAF, I was reluctant to take the herceptin, even at the minimal dose of 2mg for the rest of my life. But my new oncologist was concerned that by letting the numbers go out of control, I was just asking for more trouble, and another year later, she was proven quite right when I ended up with her-2 numbers over 600 with both BONE and PELVIC wall mets in addition to the off and on bouts in the liver I had almost always had...blah blah..smile.

About that time, the research was coming out of Canada about some folks doing 6mg every 3 weeks (you can look this up on the internet), so my onc and I compromised, and I started taking 6mg every 3 weeks, instead of 2mg every week, but after only about 4 or 5 rounds of this..., my heart started giving me problems...serious problems...quite a scare, and by then, I had been charting both my CA 27/29 numbers AND the serum Her-2 (since it first became commercially available in 2003 from Specialty Labs) and realized that my CA 27/29 was 3 and the Serum her 2 way low, and I knew that the one place YOU NEED HER-2 is the heart muscle, so I just refused to take herceptin till my numbers indicated that I needed to do so. Although my onc was FURIOUS, my heart completely recovered (recent MUGA 61--I walk a lot smile), and then, really more to calm down my onc than for my own benefit...I agree to do 6mg every SIX weeks as long as my numbers looked ok. ONC agreed and I have been doing that quite sucessfully for more than a year now, but still, this spring and summer has posed the same challenge as every year in the past 8, my numbers just tend to "WANT" to go up this time of year...so what I do is FIRST try to modify my diet and non-toxic regimen to bring the numbers around (my regimen was ... in hindsight discovered to be accidentally rich in oleic acid...but it is rich in many things so we can not be certain, but I do believe Dr. Menendez is on to something...from my own positive experience). And if I can not bring the numbers to where we want them with my diet alone, the onc will let me take "an extra" herceptin cycle at the 3-week point. So instead of one in 6 weeks of 6mg I will have 2 6mg in 6 weeks. Usually, that is all it will take...no big deal...now, but just a few years ago, when my markers went up, I was a true basket case...smile...HOPE some of this is helpful...but again, I am very unusual, my case is complex, and I do my own research , a LOT of alternative med, and I direct my own treatment. My onc even made me sign a paper to hold her harmless and every appointment she writes in my chart that she completely disagrees with what I am doing as it is not protocol...to our knowledge, I am the only person taking herceptin in such an "outside the box" fashion, but as I always LOVE TO SAY..smile...protocol or no, I AM STILL HERE, and doing quite well by the way...Because you know what?? At the end of the day (which this is getting to be she said looking at the clock..smile) it is YOUR body and YOUR life. YOU ARE NOT just your HER-2 cancer...you may be a mother, a sister, a daughter, a wife, a doctor. You may have other medical issues that will kill you faster than a slightly elevated tumor marker such as heart failure or infection from a non-necessary port...Sometimes, I worry that cancer patients rarely die of cancer..., because there is just too much that can get to them first... When dealing with this illness, you must STRIVE to look at the whole BIG PICTURE, as ugly as it is...and insist on seeing, touching, and feeling as much empirical data as you can your hands on, and then listen to your gut to make the final decision that your DOCTOR, really can't...Bottom line...keep your Ca 27/29 numbers between 5 and 10 and your Serum her-2 numbers below 15 or 12, depending on the assay, scan regularly, but not too often, and GET your life back. That is what I wish for us all, and every day, I continue to do research into the root cause of her-2 mediated cancers to that end...but, it is very complicated....Best of luck to us all, Gina

08-14-2005, 01:01 AM	#13
Gina Guest Posts: n/a	Hi J Mc and everybody, To answer J Mc's question. In a nutshell, I use the data I get from regularly taking my Serum Her-2 and CA 27/29 markers as biofeedback to control when and how much herceptin I take. And get scanned regularly as a back-up, lest, I would pick up a different, non-her-2 related cancer. It is very simple really and very non-toxic, but there is no guarantee it will work for others. Early on, it was discovered that I had the most unusually GRAPHIC response to HERCEPTIN with my CA 27.29. Way back then, I had a REALLY good/young topnotch, highly logical, incredibly intellegent onc who was smart enough, even back in 1998 to be charting my CA 27/29 on a regular basis. As he was more or less doing this anyway, he was shocked to see what happened after I took my first dose of HERCEPTIN (after being given about 2 months to live with horribly agressive liver mets...prior to getting the herceptin, he sent my breast tumor (primary) back to be checked for HER-2 and had my liver biopsied to check for it there too. The liver biopsy and the tumor block from my breast confirmed the same thing: ER-/PR- Her-2 3+, and so he convinced my insurance to pay for the herceptin as it had only been approved by the FDA for about 5 months when I started it but he could PROVE I was her-2 positive.) Anyway, the very first week I took a loading dose of 4mg/per kg of body weight, my CA 27/29 dropped STRAIGHT down..(I still have all the graphs) and the next week, straight down even more...in only 5 doses of Herceptin (five weeks : Loading dose 4 then 2 each week thereafter). At that time, we did not know much about Herceptin 's long range effects, so once the numbers normalized I made the decision to stop taking it...(being concerned about my heart as when I started chemo in 98 my MUGA was a weak 45 and I had had months of very agressive CAF and the adriamycin is very hard on the heart and I was concerned that I might "control" the cancer by staying on the herceptin, but have a heart attack or congestive heart failure doing so and die anyway as there is a LOT of coronary disease in my family...sighh...Anyway, only 5 doses of herceptin bought me nearly a YEAR of NED...incredible isn't it...but the whole time I was off, the only way my onc would agree to me NOT taking Herceptin (as he had recommended the golden standard of 2mg/per kg of body weight to be continued till I died), was if I submitted myself at first to weekly CA 27/29 and other Bloodtests, which later moved out to monthly...etc. I probably have more her-2 specific bloodtests graphs and real empirical data results in these last 8 years than almost anybody. I have saved it all in a series of 8 page-protected 4" binders...sigh...to be so anal.... My onc was a true hemotologist first/then an oncologist. He was fascinated with the various signatures different cancers left in the bloodwork...almost like footprints in the sand. I learned a lot from him. Anyway, we had a plan...he "KNEW" the cancer would return and so we agreed that when the CA 27/29 got to a certain point, we would go back on herceptin...same loading dose 4mg...then back to 2mg...We did this, it worked great...I took 6 cycles , got the numbers down to low (we liked to keep them around 8) got another year ned (but remember I was using diet and was very motivated to live a clean life as I was a single parent of a very small son), then it came back again (liver) (same time frame every year...that is where I first got my inkling that it could be somewhat microbial related because it seemed to be displaying a circadian rhythm of sorts...blah, blah Anyway, long story short...that oncologist left the area for greener pastures in the south and so with other oncologists, I pursued many different dosing strategies...I tried taking 12 very strong doses one year (loading 8, then 6, then 4 then 2, 2, 2, & 2), but that only bought me ned about the same time, another year...started going up same time same place...(in me, her-2 cancer seems to worsen from Spring into the Summer and lessen Fall into winter...again, this is just something parculiar to me I suppose...) We tried various other strategies...but because of the family heart history and my own history with CAF, I was reluctant to take the herceptin, even at the minimal dose of 2mg for the rest of my life. But my new oncologist was concerned that by letting the numbers go out of control, I was just asking for more trouble, and another year later, she was proven quite right when I ended up with her-2 numbers over 600 with both BONE and PELVIC wall mets in addition to the off and on bouts in the liver I had almost always had...blah blah..smile. About that time, the research was coming out of Canada about some folks doing 6mg every 3 weeks (you can look this up on the internet), so my onc and I compromised, and I started taking 6mg every 3 weeks, instead of 2mg every week, but after only about 4 or 5 rounds of this..., my heart started giving me problems...serious problems...quite a scare, and by then, I had been charting both my CA 27/29 numbers AND the serum Her-2 (since it first became commercially available in 2003 from Specialty Labs) and realized that my CA 27/29 was 3 and the Serum her 2 way low, and I knew that the one place YOU NEED HER-2 is the heart muscle, so I just refused to take herceptin till my numbers indicated that I needed to do so. Although my onc was FURIOUS, my heart completely recovered (recent MUGA 61--I walk a lot smile), and then, really more to calm down my onc than for my own benefit...I agree to do 6mg every SIX weeks as long as my numbers looked ok. ONC agreed and I have been doing that quite sucessfully for more than a year now, but still, this spring and summer has posed the same challenge as every year in the past 8, my numbers just tend to "WANT" to go up this time of year...so what I do is FIRST try to modify my diet and non-toxic regimen to bring the numbers around (my regimen was ... in hindsight discovered to be accidentally rich in oleic acid...but it is rich in many things so we can not be certain, but I do believe Dr. Menendez is on to something...from my own positive experience). And if I can not bring the numbers to where we want them with my diet alone, the onc will let me take "an extra" herceptin cycle at the 3-week point. So instead of one in 6 weeks of 6mg I will have 2 6mg in 6 weeks. Usually, that is all it will take...no big deal...now, but just a few years ago, when my markers went up, I was a true basket case...smile...HOPE some of this is helpful...but again, I am very unusual, my case is complex, and I do my own research , a LOT of alternative med, and I direct my own treatment. My onc even made me sign a paper to hold her harmless and every appointment she writes in my chart that she completely disagrees with what I am doing as it is not protocol...to our knowledge, I am the only person taking herceptin in such an "outside the box" fashion, but as I always LOVE TO SAY..smile...protocol or no, I AM STILL HERE, and doing quite well by the way...Because you know what?? At the end of the day (which this is getting to be she said looking at the clock..smile) it is YOUR body and YOUR life. YOU ARE NOT just your HER-2 cancer...you may be a mother, a sister, a daughter, a wife, a doctor. You may have other medical issues that will kill you faster than a slightly elevated tumor marker such as heart failure or infection from a non-necessary port...Sometimes, I worry that cancer patients rarely die of cancer..., because there is just too much that can get to them first... When dealing with this illness, you must STRIVE to look at the whole BIG PICTURE, as ugly as it is...and insist on seeing, touching, and feeling as much empirical data as you can your hands on, and then listen to your gut to make the final decision that your DOCTOR, really can't...Bottom line...keep your Ca 27/29 numbers between 5 and 10 and your Serum her-2 numbers below 15 or 12, depending on the assay, scan regularly, but not too often, and GET your life back. That is what I wish for us all, and every day, I continue to do research into the root cause of her-2 mediated cancers to that end...but, it is very complicated....Best of luck to us all, Gina