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05-14-2005, 01:19 PM

I believe that I am doing as well as I am ONLY because of Herceptin in combination with everything else I have been doing--including AC, radiation, 2 Taxol and 2 Taxotere with a year of Herceptin followed by Arimidex (starting with the 5th month of Herceptin), then a complete hysterectomy with Salpingo--oopherectomy. After that I began Doxycycline and low dose Celebrex, doubling the Celebrex after one month to 200 mg/twice/day. The following month I had osteoporosis-prevention dose of Zometa (after that my steadily rising alkaline phosphatase level stabilized and then slowly came down to what it was at time of dx. In addition to the CEelebrex and Doxycycline (50 mg/twice/day) I then started Lovastatin about 6 mos. later. During the interin I was dx'd with either a mass or synovial cyst in my lower back--which resulted in severe pain. I had my 2nd infusion of Zometa (after 6 mos--for osteoporosis prevention supposedly) and then started taking Lovastatin about 6 weeks after that. I still was in alotof pain. 6 weeks after I started the Lovastatin I doubled the Celebrex to 400 mg/twice a day--and lo and behold, the extreme lower back as well as the sciatic pain went away. There is no question in my mind from all that I have learned about b.c., including the variations about the types of bc I have--3 different aggressive types--that I was stage IV from the start. In fact, the UCLA oncologist I saw for a 2nd opinion implied that. After all my first CT scan showed several enlarged retroperitoneal nodes (3rd most common area for metastases for lobular). It also showed remaining lymph nodes (12 were removed; 9 were positive--not matted together) that WERE matted together. A recent CT scan now shows 30 to 40 retroperitoneal nodes that appeared to be matted together as well. I also have liver lesions--never tested--but that is another story. Last October I had the CTC Circulation Tumor Cell test. Results were "4." Anything >2 is considered significant.
I had asked about taking Herceptin for more than a year while still on it. I was told by Dr. Pegram at UCLA---only one year. Later, I learned that another patient who was treated at UCLA through an HMO was going to get one year of herceptin. However, she decided to increase insurance coverage from an HMO to a PPO and was told by that same doctor that she would be allowed Herceptin for the rest of her life.

It's sad that one often cannot get an honest evaluation--even if they are willing to pay out-of-pocket for it. Your insurance rules everything--at least in much of California. My husband and I recently attended a breast cancer symposium for medical professionals at the City of Hope. One dr. commented while answering a question about monitoring breast cancer with a PET scan indicated that use of that or what was done for monitoring depended on the patient's insurance. The audience responded with a nervous-sounding laugh. It almost seems that HMO insurances are on par with medicare these days--or not far above it.

So--now that there is Herceptin which CAN prolong the lives of those with Her2+ breast cancer, are those of us who can benefit from it, going to be allowed to have it? Or is everything going to be done to delay diagnosis until it is too late??? I have had first class experience with this type of manipulation from the start. My progesterone status was not tested because there was no standard protocol to treat--that's what I was told. Delay of local recurrence is also suggested--again because my treating facility does not treat (with newer forms of focused radiation).

What can be done to insure that those who can benefit are going to be allowed to have Herceptin? I sure hope that there aren't going to be articles such as the one I posted that states that there is no cost benefit. What does it matter to Genentech--if the shift for Herceptin use will be for adjuvent use---as long as they can still profit?

Please excuse the negative tone of this post. I hope that its impact can result in a positive effect for those who may receive some benefit by being able to get it in a timely manner.

05-14-2005, 01:19 PM	#11
Kaye Guest Posts: n/a	I believe that I am doing as well as I am ONLY because of Herceptin in combination with everything else I have been doing--including AC, radiation, 2 Taxol and 2 Taxotere with a year of Herceptin followed by Arimidex (starting with the 5th month of Herceptin), then a complete hysterectomy with Salpingo--oopherectomy. After that I began Doxycycline and low dose Celebrex, doubling the Celebrex after one month to 200 mg/twice/day. The following month I had osteoporosis-prevention dose of Zometa (after that my steadily rising alkaline phosphatase level stabilized and then slowly came down to what it was at time of dx. In addition to the CEelebrex and Doxycycline (50 mg/twice/day) I then started Lovastatin about 6 mos. later. During the interin I was dx'd with either a mass or synovial cyst in my lower back--which resulted in severe pain. I had my 2nd infusion of Zometa (after 6 mos--for osteoporosis prevention supposedly) and then started taking Lovastatin about 6 weeks after that. I still was in alotof pain. 6 weeks after I started the Lovastatin I doubled the Celebrex to 400 mg/twice a day--and lo and behold, the extreme lower back as well as the sciatic pain went away. There is no question in my mind from all that I have learned about b.c., including the variations about the types of bc I have--3 different aggressive types--that I was stage IV from the start. In fact, the UCLA oncologist I saw for a 2nd opinion implied that. After all my first CT scan showed several enlarged retroperitoneal nodes (3rd most common area for metastases for lobular). It also showed remaining lymph nodes (12 were removed; 9 were positive--not matted together) that WERE matted together. A recent CT scan now shows 30 to 40 retroperitoneal nodes that appeared to be matted together as well. I also have liver lesions--never tested--but that is another story. Last October I had the CTC Circulation Tumor Cell test. Results were "4." Anything >2 is considered significant. I had asked about taking Herceptin for more than a year while still on it. I was told by Dr. Pegram at UCLA---only one year. Later, I learned that another patient who was treated at UCLA through an HMO was going to get one year of herceptin. However, she decided to increase insurance coverage from an HMO to a PPO and was told by that same doctor that she would be allowed Herceptin for the rest of her life. It's sad that one often cannot get an honest evaluation--even if they are willing to pay out-of-pocket for it. Your insurance rules everything--at least in much of California. My husband and I recently attended a breast cancer symposium for medical professionals at the City of Hope. One dr. commented while answering a question about monitoring breast cancer with a PET scan indicated that use of that or what was done for monitoring depended on the patient's insurance. The audience responded with a nervous-sounding laugh. It almost seems that HMO insurances are on par with medicare these days--or not far above it. So--now that there is Herceptin which CAN prolong the lives of those with Her2+ breast cancer, are those of us who can benefit from it, going to be allowed to have it? Or is everything going to be done to delay diagnosis until it is too late??? I have had first class experience with this type of manipulation from the start. My progesterone status was not tested because there was no standard protocol to treat--that's what I was told. Delay of local recurrence is also suggested--again because my treating facility does not treat (with newer forms of focused radiation). What can be done to insure that those who can benefit are going to be allowed to have Herceptin? I sure hope that there aren't going to be articles such as the one I posted that states that there is no cost benefit. What does it matter to Genentech--if the shift for Herceptin use will be for adjuvent use---as long as they can still profit? Please excuse the negative tone of this post. I hope that its impact can result in a positive effect for those who may receive some benefit by being able to get it in a timely manner.